It's been five years, one month and 27 days since my last blog post and, well, things have changed. I lost my precious Ella Grace on June 1st, 2017 at 7:50 p.m. while she lay in my arms surrounded by our loved ones. It's a moment I will never forget, and one I never want to remember. Because that makes it real.
Two years into life after Ella may sound like a long time to some but I can assure you that when it comes to losing your child - your universe - it is just a brief moment in time. Grief is a sneaky, fickle and unwelcome companion that will follow me until I take my own last breath. And there is nothing I can do about it...except maybe write about it? Which is why I decided to start blogging again. It was a form of therapy for me when Ella was born, raising an atypical child in this world and dealing with all of the experiences and emotions that came along with it. So let's give it a shot.
It's been one year, 11 months and 361 days since Ella left this world and grief has taken me through more emotions than I previously knew existed; emotions that are so intense and strange they don't even have names. Most people who have lost a loved one will probably tell you that whole "seven stages" thing is a crock. Grief is in no way linear or even circular. It's more like a completely tangled mess with no clear path and no end. So how do we even begin to navigate it and attempt to move on?
"Move on." I despise those words right now. Can we ever really do that? And if we do, isn't that doing a disservice to the loved one we have lost? Are we leaving them behind in the wake of our own selfishness to try and live a somewhat normal life and find happiness again? It just feels wrong. But living in this hell and feeling so trapped by the overwhelming sadness is also no way to live. It's complicated to say the very, very least.
I have struggled with finding grief support. I have mostly kept my grief private, only talking sometimes to close friends, maybe an acquaintance who hears my story and seems genuine in wanting to know more, or sharing a memory on Facebook. But no one can see the real, raw, gaping wound that I hide every single day. It has only been in the last few weeks on the eve of Ella's two year angelversary that I made a decision to reach out. Because, quite frankly, I've been sinking.
I mostly lurk in online support groups, reading the pain of hundreds of other parents who have lost their children. Both heartbreaking and somewhat comforting to know you're not alone. But one thing I have found is that grief is so personal and unique to each individual it seems impossible to find anyone else who could understand your reality. Grief is like a fingerprint: no two experiences are exactly alike. That's why it's so painful, and so lonely.
But I did make a decision to try. I plan to go to my first face-to-face grief support group this week which brings about another slew of emotions. I'm nervous, of course. I'm scared of how painful it could be. And I'm also scared I may not relate at all which would make this place feel even lonelier than it already does. I have also started weekly sessions with a grief counselor. It's still very early on in the process but I can admit to having felt a small glimmer of hope from the first two sessions. These may seem like small steps but for me the act of reaching out is huge, and terrifying. But I decided to try and that's really all I can do right now.
Tuesday, May 28, 2019
Tuesday, April 1, 2014
Six
It's hard for me to believe that Ella will be turning six years old in a few weeks. On one hand, I feel like we have been through more than a lifetime's share of ups and downs. On the other hand, I think about how often I have heard from the doctors that she is living on borrowed time, which makes me wonder how much time we have left when no amount could possibly be enough.
I know it is not acceptable to talk about your child dying, but it is something you think about far too often when you are the parent of a medically fragile child. It's not an obsession or pessimism, but more giving yourself the occasional "reality check" in a futile attempt to prepare in some way for the inescapable and devastating truth. I know all parents envision their children's futures; it's just that our reality is very different and I have to accept that.
Birthdays are always bittersweet - summoning up those "where we have been" and "where we are headed" thoughts - and when Ella presented with her first loose tooth a few days ago on the eve of her sixth birthday, I was a bit blindsided by the reality of "six." It made me unexpectedly sad, and I was surprised at my reaction:
"Really? A loose tooth? After everything she has been through, *this* is what is going to send me over the edge?!"
But it does seem to be the typical things that get to me more. I suppose I'm used to being strong through the medical trials and tribulations - that is standard in this life - so the routine events catch me off guard. Like a visitor to a foreign country, I'm not familiar with the local customs. The usual childhood milestones only tend to remind me of how different our experience is and how quickly the time is passing.
I really try not to dwell in that place for too long. For the most part, I focus on living in the present and enjoying the now. But occasionally the truth rears its ugly head and makes you stop and think. Like when your child is turning six.
I know it is not acceptable to talk about your child dying, but it is something you think about far too often when you are the parent of a medically fragile child. It's not an obsession or pessimism, but more giving yourself the occasional "reality check" in a futile attempt to prepare in some way for the inescapable and devastating truth. I know all parents envision their children's futures; it's just that our reality is very different and I have to accept that.
Birthdays are always bittersweet - summoning up those "where we have been" and "where we are headed" thoughts - and when Ella presented with her first loose tooth a few days ago on the eve of her sixth birthday, I was a bit blindsided by the reality of "six." It made me unexpectedly sad, and I was surprised at my reaction:
"Really? A loose tooth? After everything she has been through, *this* is what is going to send me over the edge?!"
But it does seem to be the typical things that get to me more. I suppose I'm used to being strong through the medical trials and tribulations - that is standard in this life - so the routine events catch me off guard. Like a visitor to a foreign country, I'm not familiar with the local customs. The usual childhood milestones only tend to remind me of how different our experience is and how quickly the time is passing.
I really try not to dwell in that place for too long. For the most part, I focus on living in the present and enjoying the now. But occasionally the truth rears its ugly head and makes you stop and think. Like when your child is turning six.
Thursday, March 6, 2014
You know you're the parent of a medically fragile child when...
- You get asked at least once a week if you are a nurse.
- You have more medical supplies stockpiled in your house than a third world country.
- You constantly get asked "How do you do it?", and you have no clue either.
- Your neighbors think you have an online shopping problem because of all the boxes of medical supplies that get delivered to your doorstep.
- You feel like Norm from Cheers at the local hospital.
- You could get a job writing appeal letters.
- You have legitimately asked if there is somewhere to "plug in" your kid.
- Your child's "babysitters" must be medically certified in some capacity.
- You can pick out the mistakes in medical scenes on TV, and are familiar with all of the machines and terminology.
- Your friends and family ask you for medical advice.
- You schedule trips to the Emergency Room around things you need to do first.
- Your child's doctors take orders from you.
- You have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don't really care to know.
- Your child's bedroom looks like a mini ICU.
- You've spent more hours Googling procedures, conditions and medical terms than sleeping since your child was born.
- You have woken up to a "fed bed" on numerous occasions.
- You have a legitimate pharmacy in your kitchen.
- You take your child directly to the hospital when they're sick, not the pediatrician.
- You consider two consecutive hours of sleep with no machines alarming a huge win.
Aaaaand, last but not least...
- You have become adept at using inappropriate humor to stay somewhat sane!
- You have more medical supplies stockpiled in your house than a third world country.
- You constantly get asked "How do you do it?", and you have no clue either.
- Your neighbors think you have an online shopping problem because of all the boxes of medical supplies that get delivered to your doorstep.
- You feel like Norm from Cheers at the local hospital.
- You could get a job writing appeal letters.
- You have legitimately asked if there is somewhere to "plug in" your kid.
- Your child's "babysitters" must be medically certified in some capacity.
- You can pick out the mistakes in medical scenes on TV, and are familiar with all of the machines and terminology.
- Your friends and family ask you for medical advice.
- You schedule trips to the Emergency Room around things you need to do first.
- Your child's doctors take orders from you.
- You have lost count of the number of hospital stays, surgeries and procedures that your child has had and you don't really care to know.
- Your child's bedroom looks like a mini ICU.
- You've spent more hours Googling procedures, conditions and medical terms than sleeping since your child was born.
- You have woken up to a "fed bed" on numerous occasions.
- You have a legitimate pharmacy in your kitchen.
- You take your child directly to the hospital when they're sick, not the pediatrician.
- You consider two consecutive hours of sleep with no machines alarming a huge win.
Aaaaand, last but not least...
- You have become adept at using inappropriate humor to stay somewhat sane!
Sunday, January 12, 2014
Dear Typical Moms: Why You Can't Win
Like most things in life, it's difficult to really understand something unless you have experienced it for yourself. This holds more than true when dealing with serious situations like giving birth, losing a loved one, or having a special needs child. You can hear others talk about it, but you can't really "get it" unless it happens to you.
I don't mean for the title of this post to sound harsh. I love my typical mom friends. It's nothing they have done or not done. It's that they haven't experienced raising a child in the same way I have. I can't relate to you either. We're both moms, but that is about as far as it goes. We each had a baby, but everything from that moment on has been completely different.
I know it's awkward for you to know what to say or which questions to ask about my child. Honestly, I wouldn't know what to say to me either. And when you talk about your own children, you run the risk of making me feel bad about what I'm not experiencing as a typical mom. Which you probably do, but it's not your fault.
Do you invite my child to the birthday party knowing she can't play with other kids or join in on any activities? If you do, I might feel bad being reminded of that. If you don't, I might be mad that you left her out just because she's "different". Either reaction is possible depending on the day. But it's not your fault.
For my child's birthday, do you give her an age-appropriate toy that you know is too advanced for her, or a baby toy that you know is probably more on her level? Either way, I'll be reminded how severely delayed she is and unlike her typical peers. But it's not your fault.
I know that you are damned if you do, and damned if you don't. You are set up to fail. But it's okay. All I really care about is that you are still around after all and that you make an effort to be a part of our lives and include us in yours. So you see, you really cannot win. But just remember that I know it's not your fault.
I don't mean for the title of this post to sound harsh. I love my typical mom friends. It's nothing they have done or not done. It's that they haven't experienced raising a child in the same way I have. I can't relate to you either. We're both moms, but that is about as far as it goes. We each had a baby, but everything from that moment on has been completely different.
I know it's awkward for you to know what to say or which questions to ask about my child. Honestly, I wouldn't know what to say to me either. And when you talk about your own children, you run the risk of making me feel bad about what I'm not experiencing as a typical mom. Which you probably do, but it's not your fault.
Do you invite my child to the birthday party knowing she can't play with other kids or join in on any activities? If you do, I might feel bad being reminded of that. If you don't, I might be mad that you left her out just because she's "different". Either reaction is possible depending on the day. But it's not your fault.
For my child's birthday, do you give her an age-appropriate toy that you know is too advanced for her, or a baby toy that you know is probably more on her level? Either way, I'll be reminded how severely delayed she is and unlike her typical peers. But it's not your fault.
I know that you are damned if you do, and damned if you don't. You are set up to fail. But it's okay. All I really care about is that you are still around after all and that you make an effort to be a part of our lives and include us in yours. So you see, you really cannot win. But just remember that I know it's not your fault.
Wednesday, August 7, 2013
One of those days
It's impossible to ignore the fact that today would have been Ella's first day of kindergarten if she were healthy enough to attend. My news feed on Facebook is flooded with back to school photos. For most parents and children, this is one of the biggest milestones in a child's life.
I know, I know, things could be worse. I'm "lucky" to still have her here after everything she has been through, but some days it makes me angry that the "it could be worse" is that she could be gone; that we're that close to the bottom of the barrel, so to speak.
For the most part, social media has been a positive thing for me. I have been able to connect with hundreds of other special needs moms because of it, and made some real and lasting friendships that would have never happened otherwise.
But the downside is that when everyone is putting their lives on display, we tend to compare ourselves to everyone else. And it's impossible to ignore the missed milestones that continue to come over and over again. First steps. First words. First day of school. Etc., etc., etc. The list will continue to go on.
I don't enjoy having these pity parties, but we're all human and sometimes it's easier to focus on what we don't have rather than count our own blessings. And I honestly don't mind if seeing our struggles makes others appreciate what they do have, because most days are fine.
I try not to dwell on how difficult our life can be. Like anything else, I have honestly gotten used to it for the most part - the frequent hospital stays and the headaches that come along with managing her nursing, prescriptions, supplies and equipment. It's just our life. But some things still smack me in the face and stop me in my tracks, and this is just one of those days.
I know, I know, things could be worse. I'm "lucky" to still have her here after everything she has been through, but some days it makes me angry that the "it could be worse" is that she could be gone; that we're that close to the bottom of the barrel, so to speak.
For the most part, social media has been a positive thing for me. I have been able to connect with hundreds of other special needs moms because of it, and made some real and lasting friendships that would have never happened otherwise.
But the downside is that when everyone is putting their lives on display, we tend to compare ourselves to everyone else. And it's impossible to ignore the missed milestones that continue to come over and over again. First steps. First words. First day of school. Etc., etc., etc. The list will continue to go on.
I don't enjoy having these pity parties, but we're all human and sometimes it's easier to focus on what we don't have rather than count our own blessings. And I honestly don't mind if seeing our struggles makes others appreciate what they do have, because most days are fine.
I try not to dwell on how difficult our life can be. Like anything else, I have honestly gotten used to it for the most part - the frequent hospital stays and the headaches that come along with managing her nursing, prescriptions, supplies and equipment. It's just our life. But some things still smack me in the face and stop me in my tracks, and this is just one of those days.
Monday, May 20, 2013
Trach Week
This week is Global Tracheostomy Tube Awareness Week. Ella has had her trach since she was 6 months old. She was born with a small, fragile airway, mostly due to Pierre Robin Sequence, and was unable to be intubated for surgery as a baby. She was also found to have both central and obstructive apnea and was put on C-PAP through a ventilator at that time. This photo below shows her trach tube clearly. It's held on by velcro ties that must be changed out daily along with care to her neck and the stoma (i.e., the "hole" in her neck) to prevent breakdown of the skin and infection.
There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.
She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.
Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.
Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!
There are a few different attachments used for the end of the trach tube. In this photo she is wearing a (purple) Passy Muir Valve which lets her breathe in through the trach but not out and allows her to make noise and have a voice. Without the PMV, she cannot make any noise. The other attachment we use is an HME or humidivent which protects the opening of the tube and provides moisture, and we have an attachment to give her oxygen when needed.
She must be suctioned fairly frequently throughout the day in order to keep her airway and lungs clear. At night when she goes on the vent, the circuit attaches directly to her trach tube. Technically she is "always intubated". For someone without a trach, this happens via the mouth in emergency situations. People who need long term support for their airway and lungs receive a trach.
Wherever we go, we must always have a backup (emergency) trach of the same size and one smaller in case it needs to be changed quickly. We must also carry our portable suction machine, suction catheters, saline bullets, oxygen and a pulse ox monitor.
Although Ella's airway has gotten larger and improved over time, her lungs are weak and do not have much reserve so she will always need to be on the ventilator for C-PAP/pressure support at night. She may need additional support (a breath rate) when she becomes very ill. In addition, she would likely still be a difficult intubation in an emergency situation, so she will always have the trach. There are many people who only have them temporarily, but for Ella it will be part of her for life!
Friday, May 10, 2013
Pseudo Mom
I can't talk to you about when to switch your baby to solid foods. I can't hold a conversation with you about the latest kid's movie or toy. I don't shuttle around from school to ballet lessons and play dates. We don't get invited to birthday parties or build sandcastles on the beach on vacation. In fact, you will rarely see me out in public with my daughter at all. But I am a mom.
I know that I won't ever give her advice on boys and friendships, or help with her homework. I won't have to discipline her and determine grounding sentences. And I won't anticipate her going off to college or getting married, which are all common aspects of being a parent.
When I'm around other moms of typical children, I feel just as out of place as the girl who has no children yet. I have about as much to offer as she does: maybe some anecdotal information I heard about a friend's child or my nephew. I have no first-hand experience on the majority of parenthood topics, and that can feel very awkward like I don't really have a child at all.
But I know being a mom is more than that stuff and deep down at the heart of it we're all the same. We all strive to do what is best for our children and to keep them safe and healthy. Though our day-to-day routines and visions of our children's futures may be very different, a mom's love is universal. I know that she knows I am her mom by the way she looks at me. I know she is telling me that she loves me with her ear-to-ear smile. I know that overwhelming, inexplicable feeling of unconditional love that comes with being a mom, and that is what's most important.
I know that I won't ever give her advice on boys and friendships, or help with her homework. I won't have to discipline her and determine grounding sentences. And I won't anticipate her going off to college or getting married, which are all common aspects of being a parent.
When I'm around other moms of typical children, I feel just as out of place as the girl who has no children yet. I have about as much to offer as she does: maybe some anecdotal information I heard about a friend's child or my nephew. I have no first-hand experience on the majority of parenthood topics, and that can feel very awkward like I don't really have a child at all.
But I know being a mom is more than that stuff and deep down at the heart of it we're all the same. We all strive to do what is best for our children and to keep them safe and healthy. Though our day-to-day routines and visions of our children's futures may be very different, a mom's love is universal. I know that she knows I am her mom by the way she looks at me. I know she is telling me that she loves me with her ear-to-ear smile. I know that overwhelming, inexplicable feeling of unconditional love that comes with being a mom, and that is what's most important.
Monday, April 22, 2013
Happy Birthday, Ella Grace
On the eve of Ella's 5th birthday, I am thinking about where we were at this exact moment five years ago. I went into labor around 8:30 in the evening and we went to the hospital. We were already aware that she would be born with some type of genetic issue or syndrome based on the findings of an ultrasound I had at 26 weeks, but we didn't know exactly what it was or how she would be when she was born. Since I had spent the past 10 weeks Googling every syndrome known to man, I had had a good amount of time to get used to the idea of having a special child, as much as that is possible anyway. I think the pain of labor did a good job of keeping my mind occupied, and at that point we were just ready to "know".
It wasn't until 4 o'clock the following afternoon that the doctors announced she would need to be delivered via C-section and less than an hour later she was finally here. I remember immediately asking John, "How does she look?" but can't for the life of me remember what he said. I got a quick glance at her in my drug-induced stupor and she was whisked away to the NICU while I was banished to my hospital bed unable to get up due to the surgery.
Now, I understand that doctors often err on the side of "worst case scenario". I guess it's at least in part so they don't imply false hope and to cover their own behinds, but our neonatologist did not have many good things to say when he finally came to my room and delivered the news of her diagnosis. I was handed computer printouts about Cornelia de Lange Syndrome (www.cdlsusa.org) and given a laundry list of the medical problems they had already noted and more they anticipated. All I can say is thank goodness for that little button that gave me more pain medicine when I pushed it. Well, that's until some time in the middle of the night when my epidural slipped out...but that's another story for another day.
It wasn't until the next morning that I really got to meet her for the first time. They wheeled me into the NICU and I saw my tiny, hairy, beautiful baby with a gazillion wires and tubes coming out. At 5 lbs. 1 oz. she was actually a decent size considering her diagnosis and the fact she was a few weeks premature. Despite everything they said was "wrong" with her, she was beautiful. And she was mine. I knew she was going to be okay and that was all that mattered.
Birthdays are always an emotional time filled with a lot of conflicting emotions. I'm so honored to be her mother. She has been through more medically than most people will experience in a lifetime but you would not know it by looking at her. She has a smile that can light up a stadium. She brings so much joy to everyone who knows her, and even to many who have never met her in person. She is honestly the happiest human being that I have ever seen and I could not be more thankful for that. She is resilient beyond belief. She has bounced back from the verge of death on more than one occasion. She endures constant hospitalizations with people poking and prodding and examining her. She smiles at them all. I know that I am biased, but there is just something about Ella. She leaves an indelible mark on everyone she meets and people do not forget her.
But if I'm going to be completely honest about this life with her, I have to talk about the conflicting emotions that come along with having a special child with exceptional needs. Every year that passes, the gap between Ella and her typical peers widens. As a parent it is hard to watch. Not for her, but for me. I know that it is purely selfish because SHE is happy. She doesn't understand all of the things that she doesn't get to do. I really try to not linger there, but I would be lying if I said those tinges of jealousy don't pop up every now and then.
Last week I went looking for a gift to give to her at the party we held this past weekend. The truth is, I could wrap up a toy she has had for years and she would smile just as big when we gave it to her. But I want to be able to get her things even though she doesn't need them or even understand the concept of getting a gift. So I found myself browsing the infant toy aisle for the fifth year in a row and I had a moment. It was obvious upon checking out that I was buying a birthday gift and I was dreading the cashier asking me whose birthday it was and how old she was going to be and imagining the look on her face if I answered honestly that she was turning five. Thankfully that didn't happen.
The occasional pity party is inevitable I think. The trick is to not linger there too long. Accept reality and move on, and above all COUNT YOUR BLESSINGS. I even get angry with myself for going there when I'm fully aware that she almost didn't make it to her 5th birthday and what a gift it is that she did. I know far too many parents who have lost their child and I have to keep it in perspective and cherish every moment. Tomorrow isn't guaranteed for any of us.
I have always loved celebrating any occasion, it's my nature. Anyone who knows me knows that I love a party! So for Ella I try and go all out and make it a true celebration with lots of family and friends because it really is a big deal. It's also a chance to thank those around us for their support of Ella and our family, and we are lucky to have so many people to thank.
The first time I saw Ella in the NICU
Ella Grace at her 5th birthday party this past weekend
It wasn't until 4 o'clock the following afternoon that the doctors announced she would need to be delivered via C-section and less than an hour later she was finally here. I remember immediately asking John, "How does she look?" but can't for the life of me remember what he said. I got a quick glance at her in my drug-induced stupor and she was whisked away to the NICU while I was banished to my hospital bed unable to get up due to the surgery.
Now, I understand that doctors often err on the side of "worst case scenario". I guess it's at least in part so they don't imply false hope and to cover their own behinds, but our neonatologist did not have many good things to say when he finally came to my room and delivered the news of her diagnosis. I was handed computer printouts about Cornelia de Lange Syndrome (www.cdlsusa.org) and given a laundry list of the medical problems they had already noted and more they anticipated. All I can say is thank goodness for that little button that gave me more pain medicine when I pushed it. Well, that's until some time in the middle of the night when my epidural slipped out...but that's another story for another day.
It wasn't until the next morning that I really got to meet her for the first time. They wheeled me into the NICU and I saw my tiny, hairy, beautiful baby with a gazillion wires and tubes coming out. At 5 lbs. 1 oz. she was actually a decent size considering her diagnosis and the fact she was a few weeks premature. Despite everything they said was "wrong" with her, she was beautiful. And she was mine. I knew she was going to be okay and that was all that mattered.
Birthdays are always an emotional time filled with a lot of conflicting emotions. I'm so honored to be her mother. She has been through more medically than most people will experience in a lifetime but you would not know it by looking at her. She has a smile that can light up a stadium. She brings so much joy to everyone who knows her, and even to many who have never met her in person. She is honestly the happiest human being that I have ever seen and I could not be more thankful for that. She is resilient beyond belief. She has bounced back from the verge of death on more than one occasion. She endures constant hospitalizations with people poking and prodding and examining her. She smiles at them all. I know that I am biased, but there is just something about Ella. She leaves an indelible mark on everyone she meets and people do not forget her.
But if I'm going to be completely honest about this life with her, I have to talk about the conflicting emotions that come along with having a special child with exceptional needs. Every year that passes, the gap between Ella and her typical peers widens. As a parent it is hard to watch. Not for her, but for me. I know that it is purely selfish because SHE is happy. She doesn't understand all of the things that she doesn't get to do. I really try to not linger there, but I would be lying if I said those tinges of jealousy don't pop up every now and then.
Last week I went looking for a gift to give to her at the party we held this past weekend. The truth is, I could wrap up a toy she has had for years and she would smile just as big when we gave it to her. But I want to be able to get her things even though she doesn't need them or even understand the concept of getting a gift. So I found myself browsing the infant toy aisle for the fifth year in a row and I had a moment. It was obvious upon checking out that I was buying a birthday gift and I was dreading the cashier asking me whose birthday it was and how old she was going to be and imagining the look on her face if I answered honestly that she was turning five. Thankfully that didn't happen.
The occasional pity party is inevitable I think. The trick is to not linger there too long. Accept reality and move on, and above all COUNT YOUR BLESSINGS. I even get angry with myself for going there when I'm fully aware that she almost didn't make it to her 5th birthday and what a gift it is that she did. I know far too many parents who have lost their child and I have to keep it in perspective and cherish every moment. Tomorrow isn't guaranteed for any of us.
I have always loved celebrating any occasion, it's my nature. Anyone who knows me knows that I love a party! So for Ella I try and go all out and make it a true celebration with lots of family and friends because it really is a big deal. It's also a chance to thank those around us for their support of Ella and our family, and we are lucky to have so many people to thank.
Monday, February 25, 2013
Please Don't Tell Me How To Feel
Having a child with special needs is a process. We grieve and struggle with acceptance, though it does not in any way mean we aren't thankful for our children. It simply means that we must grieve the loss of the expectations we had of a life with a typical child, and learn to navigate the struggles that come with having a special one.
No one expects to have a child with severe disabilities or medical issues, so when it happens to you, you feel like your world has been turned upside down. Adjusting to your new world takes time; how much time depends on the individual. For many, it's a lifetime process.
Grief has been described as coming in waves. At first they come fast and furious, but in time they usually begin to slow down though you still never know when the next one is going to hit. So as grief does, never completely leaving you alone.
The five stages of grief have been described as denial and isolation, anger, bargaining, depression, and acceptance. They say we don't necessarily enter each stage in that order, and often move in between the stages over time. I know for me personally, this is true. Even once you accept what has happened, you still fall back into the other stages from time to time.
This is why I ask that you never tell me how I'm supposed to feel. And I don't mean it to sound harsh. I know people just want to help, and are maybe even trying to help themselves make sense of our situation, but it doesn't help us. The process is far too personal and so inconstant, it just isn't possible to know how someone *should* feel. And if we're feeling far from what you say we should be feeling, it can only make us feel worse.
We don't have control over this process and there is no single prescription for dealing with it. We are going to be sad at times. We are going to be angry at times. We are going to be happy at times. But we cannot predict it. All we need is an ear to listen when we feel like talking, a shoulder to cry on when we feel like losing it, and a voice to help us cheer when we feel like celebrating.
No one expects to have a child with severe disabilities or medical issues, so when it happens to you, you feel like your world has been turned upside down. Adjusting to your new world takes time; how much time depends on the individual. For many, it's a lifetime process.
Grief has been described as coming in waves. At first they come fast and furious, but in time they usually begin to slow down though you still never know when the next one is going to hit. So as grief does, never completely leaving you alone.
The five stages of grief have been described as denial and isolation, anger, bargaining, depression, and acceptance. They say we don't necessarily enter each stage in that order, and often move in between the stages over time. I know for me personally, this is true. Even once you accept what has happened, you still fall back into the other stages from time to time.
This is why I ask that you never tell me how I'm supposed to feel. And I don't mean it to sound harsh. I know people just want to help, and are maybe even trying to help themselves make sense of our situation, but it doesn't help us. The process is far too personal and so inconstant, it just isn't possible to know how someone *should* feel. And if we're feeling far from what you say we should be feeling, it can only make us feel worse.
We don't have control over this process and there is no single prescription for dealing with it. We are going to be sad at times. We are going to be angry at times. We are going to be happy at times. But we cannot predict it. All we need is an ear to listen when we feel like talking, a shoulder to cry on when we feel like losing it, and a voice to help us cheer when we feel like celebrating.
Tuesday, February 12, 2013
What's With The Name?
When I found out we were having a girl, I was over the moon. I really, really wanted a little girl. My mom and I immediately began shopping like fiends. We couldn't resist all of the precious clothes and hair bows and frilly things that you could buy for a little girl.
Even though Ella spent a considerable amount of time in the hospital as a baby, we didn't let that stop us from dolling her up. Every day we were excited to pick out a new outfit and take pictures of her. It quickly became the thing that helped us retain some sense of normalcy in a very abnormal, and often scary, situation.
It wasn't long before the hospital staff took notice of our obsession with decking Ella out. Her nurses were often excited to join in the fun, and people began stopping by daily to see her and check out her outfit for the day. Because of her extreme medical issues, she has always been hospitalized in an ICU (NICU, PICU, TICU) and at some point, she became known as "the best dressed baby in the ICU".
I believe one of the great things about having a special child is that it allows you to have a different perspective and maybe not take for granted the little things that others sometimes might. When we learned that Ella was going to be born "different", we had to readjust a lot of our expectations, but that did not include how we could dress her! It is something "normal" we can continue to do for her when most days are far from typical.
At almost 5, I'm glad to say that Ella still upholds her reputation at the hospital. People still come by to see what she is wearing and what color bow she has in. I think it makes them happy too since they spend their days around children who are sick and injured and not getting to just be children. It adds a little bit of balance and fun to a sometimes gloomy environment.
Our little fashionista in the ICU at six months old.
Even though Ella spent a considerable amount of time in the hospital as a baby, we didn't let that stop us from dolling her up. Every day we were excited to pick out a new outfit and take pictures of her. It quickly became the thing that helped us retain some sense of normalcy in a very abnormal, and often scary, situation.
It wasn't long before the hospital staff took notice of our obsession with decking Ella out. Her nurses were often excited to join in the fun, and people began stopping by daily to see her and check out her outfit for the day. Because of her extreme medical issues, she has always been hospitalized in an ICU (NICU, PICU, TICU) and at some point, she became known as "the best dressed baby in the ICU".
I believe one of the great things about having a special child is that it allows you to have a different perspective and maybe not take for granted the little things that others sometimes might. When we learned that Ella was going to be born "different", we had to readjust a lot of our expectations, but that did not include how we could dress her! It is something "normal" we can continue to do for her when most days are far from typical.
At almost 5, I'm glad to say that Ella still upholds her reputation at the hospital. People still come by to see what she is wearing and what color bow she has in. I think it makes them happy too since they spend their days around children who are sick and injured and not getting to just be children. It adds a little bit of balance and fun to a sometimes gloomy environment.
Thursday, February 7, 2013
The "R" Word
I have been mulling over this post for probably a couple of years now. Being tied closely to other special needs families via the internet and social networking sites, I often see blog posts and articles on this subject. Last night I came across another which got me thinking about it once again.
Mental retardation is a clinical term. It was developed to classify individuals with cognitive deficits, historically those with an IQ below 70. Basically, it describes those born with intellectual and developmental disabilities which may or may not be related to a syndrome.
I have always felt that when I did finally post about this topic I would need to be completely forthcoming and admit that prior to the birth of my daughter I, too, had used the term "retarded" in a non-clinical, derogatory manner. I believe there are only two reasons why someone would use the word: 1) they are ignorant about how and why it is hurtful or 2) they are flippant and don't care that it is hurtful.
I fell into the first category. I didn't know any better. I didn't understand why it was wrong to say it. I had never thought about it. I never had a reason to think about it. Then I became pregnant with Ella, and by no fault of her own, she was born with intellectual and physical disabilities. She was what could be clinically described as "mentally retarded". Even though I KNOW it is a legitimate, clinical term, it still hurts me to write that. Why? Because of the stigma associated with the word. Because it's still used so freely and flippantly by so many as an insult to describe something that is dumb, stupid or not worthy. My daughter is the opposite of those things. Her name is not interchangeable with the common perception of the definition of the word "retarded".
I believe a major part of the struggle special needs parents go through, especially in the beginning when they find out their child will be different, is not only grief over the loss of the expectations they had for a typical child, but also grief and worry over how the world will view and treat their child because they are different. We all know that the world can be a cruel place, especially if you possess noticeable differences from what is considered to be the norm or the perfection society makes us believe we should strive for. We see how much more prevalent this behavior is among children and teens, but as we grow into adults it becomes less socially acceptable to treat people this way. We come to know better, probably because we all experienced ridicule at some point growing up and know how awful it feels.
But when it comes to people with disabilities, it is still too socially acceptable to use disrespectful language, and essentially make fun of them, even among adults. Is it because most people have never had a personal relationship with someone who is disabled? It has to be. Because if you have ever known or loved someone who is, you would understand how hurtful it is to hear it. If it's not okay to make fun of people who CAN defend themselves, how is it okay to make fun of people who don't even have the ability to stand up for themselves?
Just like the "N" word, the "R" word has clearly become a pejorative in our society. So why would people purposefully continue to use language that they know is hurtful? Freedom of speech doesn't include hate speech. Originally, freedom of speech was a right given to speak up against the government, to protect and advocate for ourselves. It doesn't imply the right to use dangerous and hurtful language. Just as libel and slander are not allowed to defame someone's character, neither should language that disrespects a population of people who are mostly denied the right to free speech themselves simply due to their disabilities.
People with disabilities were born that way. The same as I happened to be born with brown eyes, it wasn't a choice and it can't be changed. Nor should it. But what can be changed is the way these individuals are viewed and often disrespected in our society - a large part of which is tied to the acceptance and derogatory use of the "R" word.
Mental retardation is a clinical term. It was developed to classify individuals with cognitive deficits, historically those with an IQ below 70. Basically, it describes those born with intellectual and developmental disabilities which may or may not be related to a syndrome.
I have always felt that when I did finally post about this topic I would need to be completely forthcoming and admit that prior to the birth of my daughter I, too, had used the term "retarded" in a non-clinical, derogatory manner. I believe there are only two reasons why someone would use the word: 1) they are ignorant about how and why it is hurtful or 2) they are flippant and don't care that it is hurtful.
I fell into the first category. I didn't know any better. I didn't understand why it was wrong to say it. I had never thought about it. I never had a reason to think about it. Then I became pregnant with Ella, and by no fault of her own, she was born with intellectual and physical disabilities. She was what could be clinically described as "mentally retarded". Even though I KNOW it is a legitimate, clinical term, it still hurts me to write that. Why? Because of the stigma associated with the word. Because it's still used so freely and flippantly by so many as an insult to describe something that is dumb, stupid or not worthy. My daughter is the opposite of those things. Her name is not interchangeable with the common perception of the definition of the word "retarded".
I believe a major part of the struggle special needs parents go through, especially in the beginning when they find out their child will be different, is not only grief over the loss of the expectations they had for a typical child, but also grief and worry over how the world will view and treat their child because they are different. We all know that the world can be a cruel place, especially if you possess noticeable differences from what is considered to be the norm or the perfection society makes us believe we should strive for. We see how much more prevalent this behavior is among children and teens, but as we grow into adults it becomes less socially acceptable to treat people this way. We come to know better, probably because we all experienced ridicule at some point growing up and know how awful it feels.
But when it comes to people with disabilities, it is still too socially acceptable to use disrespectful language, and essentially make fun of them, even among adults. Is it because most people have never had a personal relationship with someone who is disabled? It has to be. Because if you have ever known or loved someone who is, you would understand how hurtful it is to hear it. If it's not okay to make fun of people who CAN defend themselves, how is it okay to make fun of people who don't even have the ability to stand up for themselves?
Just like the "N" word, the "R" word has clearly become a pejorative in our society. So why would people purposefully continue to use language that they know is hurtful? Freedom of speech doesn't include hate speech. Originally, freedom of speech was a right given to speak up against the government, to protect and advocate for ourselves. It doesn't imply the right to use dangerous and hurtful language. Just as libel and slander are not allowed to defame someone's character, neither should language that disrespects a population of people who are mostly denied the right to free speech themselves simply due to their disabilities.
People with disabilities were born that way. The same as I happened to be born with brown eyes, it wasn't a choice and it can't be changed. Nor should it. But what can be changed is the way these individuals are viewed and often disrespected in our society - a large part of which is tied to the acceptance and derogatory use of the "R" word.
Friday, January 18, 2013
Technology-dependence
Most people are familiar with the term "special needs" which encompasses anything from food allergies to autism to genetic disorders and the medically fragile. Technology-dependent children, however, are a relatively small population in terms of special needs. It's not often that you see or hear anything about children with these extreme needs that includes things like oxygen dependence/continuous oxygen saturation monitoring and children with tracheostomies who may be either partially or fully ventilator dependent. In short, these children rely on technology to stay healthy and, frankly, to keep them alive.
A month after Ella was born, she was transferred from the NICU at a regular hospital to the children's hospital. At this point, Ella had been diagnosed with a genetic syndrome (CdLS), reflux and feeding difficulty, and relied on a feeding tube to eat which was fairly drastic to us being new to the world of special needs. I remember very clearly looking down the opposing hallway while walking to the NICU and seeing the sign for the "Technology-dependent ICU" (or TICU) and thinking to myself, "My God, those poor children. What has to happen for a child to end up there?" It just sounded bad.
Admittedly, if I were to hear someone utter those words within earshot of me now it would probably upset me because, of course, in our eyes she's great. But just as I was naive back then and had no clue what technology-dependent even meant, I understand this is the truth for the general population.
A short five months later, we found ourselves to be the parents of a child admitted to the TICU. Ella had received a tracheostomy due to a small and fragile airway and an inability to be traditionally intubated. We had also learned that she had both central and obstructive sleep apnea and she was placed on a ventilator at night with some supplemental oxygen needs. It was a scary world to land in with a six month old infant.
But today, nearly five years later, all of this "stuff" seems so normal to us. Ella doesn't go anywhere with out an O2 monitor, suction machine (to help clear her trach), feeding pump, emergency trach bag and oxygen. She is only on the ventilator overnight. Though she has been and continues to go through a lot medically, she is the happiest child you will ever encounter. You see, even we can count our blessings though to a lot of people our situation probably looks frightening and less than enviable. It's all relative, isn't it?
It's not likely that you'll run into a family like ours very often. For one thing, most of our children get sick too easily to be out of the home much, however many do go to school. But if you do happen upon a family like ours, my hope is that you might remember this post and have a better understanding about what it means to have a technology-dependent child. If you look past all the medical equipment, you'll see that we're just a family, like you, doing whatever is necessary for our child to thrive.
A month after Ella was born, she was transferred from the NICU at a regular hospital to the children's hospital. At this point, Ella had been diagnosed with a genetic syndrome (CdLS), reflux and feeding difficulty, and relied on a feeding tube to eat which was fairly drastic to us being new to the world of special needs. I remember very clearly looking down the opposing hallway while walking to the NICU and seeing the sign for the "Technology-dependent ICU" (or TICU) and thinking to myself, "My God, those poor children. What has to happen for a child to end up there?" It just sounded bad.
Admittedly, if I were to hear someone utter those words within earshot of me now it would probably upset me because, of course, in our eyes she's great. But just as I was naive back then and had no clue what technology-dependent even meant, I understand this is the truth for the general population.
A short five months later, we found ourselves to be the parents of a child admitted to the TICU. Ella had received a tracheostomy due to a small and fragile airway and an inability to be traditionally intubated. We had also learned that she had both central and obstructive sleep apnea and she was placed on a ventilator at night with some supplemental oxygen needs. It was a scary world to land in with a six month old infant.
But today, nearly five years later, all of this "stuff" seems so normal to us. Ella doesn't go anywhere with out an O2 monitor, suction machine (to help clear her trach), feeding pump, emergency trach bag and oxygen. She is only on the ventilator overnight. Though she has been and continues to go through a lot medically, she is the happiest child you will ever encounter. You see, even we can count our blessings though to a lot of people our situation probably looks frightening and less than enviable. It's all relative, isn't it?
It's not likely that you'll run into a family like ours very often. For one thing, most of our children get sick too easily to be out of the home much, however many do go to school. But if you do happen upon a family like ours, my hope is that you might remember this post and have a better understanding about what it means to have a technology-dependent child. If you look past all the medical equipment, you'll see that we're just a family, like you, doing whatever is necessary for our child to thrive.
Tuesday, January 15, 2013
180º
When we were at CHOP (The Children's Hospital of Philadelphia) last year for Ella's fundoplication revision, I was asked to participate in a study about decision making by parents of seriously ill children. As evidenced by this blog, I have never been shy about sharing my thoughts and experiences going through this life and agreed to take part. Today, four months later, I received a follow up survey which I just completed.
Many of the questions regarding my current emotions and state of mind were the same: to what degree have I felt anxious/
scared/hopeful/angry/guilty/depressed/proud/etc. As I was checking off my answers, it really hit me how much things have changed for the better in a relatively short period of time.
This past summer we experienced one of the darkest times, a close second to a few years ago when she was barely holding on to life on the oscillator after contracting RSV. This time, it wasn't the result of an acute illness but rather the process of her body and systems failing her. Nothing is scarier than watching your child deteriorate and not knowing how to stop it. I had just made the most drastic decision ever concerning her care by getting her transferred to Philadelphia to undergo a risky surgery. The alternatives we were presented with at our home hospital were risky as well, but also indicated that her quality of life would be drastically reduced. Thankfully, the surgery was successful and Ella is thriving.
It all feels like a dream now; like it didn't really happen. Once we headed home, I did my best to not look back - surely a coping mechanism at least in part. I think it's difficult to really gauge the degree of despair when you're in the moment. You know things are bad, but you're also focused on a solution so there isn't a lot of time for wallowing. But shutting out the experience once it was over didn't allow me to realize how far we have bounced back, until today when I did the survey. The difference is night and day. A complete 180.
There are never any guarantees, especially when dealing with a complex and fragile child. I know that won't be the last time we're faced with a tough situation. As things progress, we understand that our choices will become increasingly unappealing and difficult, but we can also rely on the fact that we have come through those dark times before and are stronger for it.
Many of the questions regarding my current emotions and state of mind were the same: to what degree have I felt anxious/
scared/hopeful/angry/guilty/depressed/proud/etc. As I was checking off my answers, it really hit me how much things have changed for the better in a relatively short period of time.
This past summer we experienced one of the darkest times, a close second to a few years ago when she was barely holding on to life on the oscillator after contracting RSV. This time, it wasn't the result of an acute illness but rather the process of her body and systems failing her. Nothing is scarier than watching your child deteriorate and not knowing how to stop it. I had just made the most drastic decision ever concerning her care by getting her transferred to Philadelphia to undergo a risky surgery. The alternatives we were presented with at our home hospital were risky as well, but also indicated that her quality of life would be drastically reduced. Thankfully, the surgery was successful and Ella is thriving.
It all feels like a dream now; like it didn't really happen. Once we headed home, I did my best to not look back - surely a coping mechanism at least in part. I think it's difficult to really gauge the degree of despair when you're in the moment. You know things are bad, but you're also focused on a solution so there isn't a lot of time for wallowing. But shutting out the experience once it was over didn't allow me to realize how far we have bounced back, until today when I did the survey. The difference is night and day. A complete 180.
There are never any guarantees, especially when dealing with a complex and fragile child. I know that won't be the last time we're faced with a tough situation. As things progress, we understand that our choices will become increasingly unappealing and difficult, but we can also rely on the fact that we have come through those dark times before and are stronger for it.
Saturday, January 5, 2013
What It's Like
I want to preface this by saying that nothing I post here is meant to invite any kind of pity. I know I have stated that before. I really just want to help others understand what this life is like and realize it's okay to ask questions and not feel sorry for us and to talk to us about our lives and our kids. It's also an outlet for me to talk things out as we move along in this journey and our perspective changes.
The best analogy that I have come up with to describe what it's like to have a child like Ella is it's like having a perpetual newborn. Any parent can remember the days of having an infant when they depended on you for everything. Eventually, most babies grow up and become more and more self sufficient as time goes on. But with a child like Ella, that doesn't happen. Just as when she was a baby, she needs us to do everything for her plus the medical stuff that comes along with her condition. She depends on us to be fed, changed, moved, etc. She can't tell us what she needs or wants or what is wrong. She doesn't sleep normally throughout the night. It's very similar to having a newborn that grows bigger in size.
You hear a lot about things like "baby blues" and postpartum depression which can be hormonal, but is often also situational for new moms due to things like less freedom, lack of sleep, the worry about caring properly for a fragile new child, and changes in social and work relationships. I think it's safe to say that just like our children don't grow out of the newborn stage, us moms often suffer from perpetual "baby blues" because the situation doesn't change much as they age. It's exhausting, challenging and stressful on an ongoing basis.
I'm lucky to be connected to hundreds of other moms in similar positions as mine. It's one of the most important things to my sanity. But it also allows me to know that dealing with extreme stress and mental health issues is rampant among us. Some are able to get by without medication or therapy, some are not. We all have to do what's best for ourselves and our own situations. And I think (hope) the stigma of dealing with these issues is decreasing because no one should feel ashamed about asking for help.
We are lucky to have access to private duty nursing for Ella. She is too fragile for daycare or school. It's difficult having extra people in your house, but you get used to it. I know that I can't physically or mentally do this alone. Just as babies grow up and are able to help take care of themselves, we have to bite the bullet and realize we can't do it all by ourselves forever. It isn't natural. So when the guilt creeps in that I have a nurse at night to sit and watch my child while I'm asleep, or so that my husband and I can take a break and go out for dinner, I have to snap myself back into reality that this life isn't normal and I deserve the reprieve. It's a constant struggle, similar to those I'm sure every other mom in the world goes through. I know that "mom guilt" is universal! This is just how it plays out in our world.
The best analogy that I have come up with to describe what it's like to have a child like Ella is it's like having a perpetual newborn. Any parent can remember the days of having an infant when they depended on you for everything. Eventually, most babies grow up and become more and more self sufficient as time goes on. But with a child like Ella, that doesn't happen. Just as when she was a baby, she needs us to do everything for her plus the medical stuff that comes along with her condition. She depends on us to be fed, changed, moved, etc. She can't tell us what she needs or wants or what is wrong. She doesn't sleep normally throughout the night. It's very similar to having a newborn that grows bigger in size.
You hear a lot about things like "baby blues" and postpartum depression which can be hormonal, but is often also situational for new moms due to things like less freedom, lack of sleep, the worry about caring properly for a fragile new child, and changes in social and work relationships. I think it's safe to say that just like our children don't grow out of the newborn stage, us moms often suffer from perpetual "baby blues" because the situation doesn't change much as they age. It's exhausting, challenging and stressful on an ongoing basis.
I'm lucky to be connected to hundreds of other moms in similar positions as mine. It's one of the most important things to my sanity. But it also allows me to know that dealing with extreme stress and mental health issues is rampant among us. Some are able to get by without medication or therapy, some are not. We all have to do what's best for ourselves and our own situations. And I think (hope) the stigma of dealing with these issues is decreasing because no one should feel ashamed about asking for help.
We are lucky to have access to private duty nursing for Ella. She is too fragile for daycare or school. It's difficult having extra people in your house, but you get used to it. I know that I can't physically or mentally do this alone. Just as babies grow up and are able to help take care of themselves, we have to bite the bullet and realize we can't do it all by ourselves forever. It isn't natural. So when the guilt creeps in that I have a nurse at night to sit and watch my child while I'm asleep, or so that my husband and I can take a break and go out for dinner, I have to snap myself back into reality that this life isn't normal and I deserve the reprieve. It's a constant struggle, similar to those I'm sure every other mom in the world goes through. I know that "mom guilt" is universal! This is just how it plays out in our world.
Saturday, October 20, 2012
Out and About
Whew, where has this year gone? I think we must have spent at least 80% of it in the hospital with Ella. In my mind it feels like it should still be January 2012, but people are already decorating for Halloween and putting out Christmas decorations in the stores so...
Now that we seem to have things under control with Ella's health for the moment (*knocks on wood*), I have been struggling with how to act like a "normal" family. For starters, I'm not used to having her at home. And with a change in our nursing hours, we aren't used to having long daytime stretches, on Saturdays in particular, where it's just the three of us. And since she is my first child, I really have no clue what a typical family of three would do on a Saturday afternoon.
Of course we aren't typical. There are things to consider. Getting Ella out of the house is no small feat, and she isn't used to being outside so the weather is a definite factor. But lately the temperatures have been right and the skies clear so I'm forcing myself to find things for us to do on days like today.
I go online this morning and find an event not too far from us that is also pet friendly and think to myself, this could work. It's a beautiful day and after all, Biscuits (our 6 lb. chihuahua) deserves to get out too since he spends as much time in his crate as we do at the hospital.
So we start getting things together.
Ella's feeding pump? Check.
Suction machine? Check.
Pulse ox monitor? Check.
Trach 'go' bag and extra supplies? Check.
Diaper bag? Check.
What are we forgetting? Oh right, the dog.
Biscuits? Check.
We manage to get everyone loaded into the car and we're on our way. Of course we're low on gas and have to make a stop at the station to fill up first. Fine. We get on our way again and by the noises coming from the dog crate in the front seat, I'm pretty sure Biscuits is remembering the last time we put him in the car which resulted in a loss of his manhood. Sorry, little buddy. I try to reassure him he is going to have FUN! He doesn't believe me.
Meanwhile, Ella is busy making her own sounds in the backseat. Time to suction. Biscuits is still very upset. The traffic is terrible! Why is it taking an hour to go 10 miles???
Finally, we make it to our destination and...well, this doesn't look right. They're setting up for a wedding here and I'm pretty sure they aren't expecting THIS to show up. I quickly look up the event on my phone.
Ooooops.
"It's tomorrow," I tell my husband. "I thought today was the 21st." Heavy sigh from the driver's seat. "It's okay," he says. "Let's just grab some food and head back."
Deflated in the backseat, I remember three years ago when we were at the park in our own town for the 4th of July festivities (my first blog post was a result of that night) - there was a dog park in there. I suggest it to John and he agrees it's a suitable backup plan. Phew.
An hour and a half after leaving home, we make it to the dog park that is 10 minutes from our house. Biscuits is in heaven! And Ella seems to be enjoying herself as well. People are surprisingly friendly and talkative with us. After all, you never know how you will be received when you're wheeling around your "special" child with so much stuff hanging off her chair it resembles the Clampett's move to Beverly Hills. But it was nice. Really nice.
Sitting around the house for hours on end isn't good for anyone. It may take a little more forethought, planning and effort to make a family outing happen, but it's necessary for all of us. When you have a special child, especially a medically fragile one, EVERYTHING is a little more difficult - even the fun stuff. It's simply another reality that we have to accept and move on with our lives.
Ella enjoying her day out at the dog park.
Now that we seem to have things under control with Ella's health for the moment (*knocks on wood*), I have been struggling with how to act like a "normal" family. For starters, I'm not used to having her at home. And with a change in our nursing hours, we aren't used to having long daytime stretches, on Saturdays in particular, where it's just the three of us. And since she is my first child, I really have no clue what a typical family of three would do on a Saturday afternoon.
Of course we aren't typical. There are things to consider. Getting Ella out of the house is no small feat, and she isn't used to being outside so the weather is a definite factor. But lately the temperatures have been right and the skies clear so I'm forcing myself to find things for us to do on days like today.
I go online this morning and find an event not too far from us that is also pet friendly and think to myself, this could work. It's a beautiful day and after all, Biscuits (our 6 lb. chihuahua) deserves to get out too since he spends as much time in his crate as we do at the hospital.
So we start getting things together.
Ella's feeding pump? Check.
Suction machine? Check.
Pulse ox monitor? Check.
Trach 'go' bag and extra supplies? Check.
Diaper bag? Check.
What are we forgetting? Oh right, the dog.
Biscuits? Check.
We manage to get everyone loaded into the car and we're on our way. Of course we're low on gas and have to make a stop at the station to fill up first. Fine. We get on our way again and by the noises coming from the dog crate in the front seat, I'm pretty sure Biscuits is remembering the last time we put him in the car which resulted in a loss of his manhood. Sorry, little buddy. I try to reassure him he is going to have FUN! He doesn't believe me.
Meanwhile, Ella is busy making her own sounds in the backseat. Time to suction. Biscuits is still very upset. The traffic is terrible! Why is it taking an hour to go 10 miles???
Finally, we make it to our destination and...well, this doesn't look right. They're setting up for a wedding here and I'm pretty sure they aren't expecting THIS to show up. I quickly look up the event on my phone.
Ooooops.
"It's tomorrow," I tell my husband. "I thought today was the 21st." Heavy sigh from the driver's seat. "It's okay," he says. "Let's just grab some food and head back."
Deflated in the backseat, I remember three years ago when we were at the park in our own town for the 4th of July festivities (my first blog post was a result of that night) - there was a dog park in there. I suggest it to John and he agrees it's a suitable backup plan. Phew.
An hour and a half after leaving home, we make it to the dog park that is 10 minutes from our house. Biscuits is in heaven! And Ella seems to be enjoying herself as well. People are surprisingly friendly and talkative with us. After all, you never know how you will be received when you're wheeling around your "special" child with so much stuff hanging off her chair it resembles the Clampett's move to Beverly Hills. But it was nice. Really nice.
Sitting around the house for hours on end isn't good for anyone. It may take a little more forethought, planning and effort to make a family outing happen, but it's necessary for all of us. When you have a special child, especially a medically fragile one, EVERYTHING is a little more difficult - even the fun stuff. It's simply another reality that we have to accept and move on with our lives.
Thursday, June 7, 2012
Where Did Everyone Go?
There's an amazing group for special needs families in the Atlanta area called FOCUS (Families Of Children Under Stress). They provide a myriad of resources, activities and support for families like mine.
We have attended a few events they offer for medically fragile children, but most often they visit us in the hospital. During one visit back in January, I was having a rough day. The isolation that this life can bring sometimes hits you like a ton of bricks. Sitting in a hospital room for weeks on end by yourself can bring you down, though I try and keep myself busy and not have too many pity parties. On this day I was having a party, and my friend from FOCUS suggested I write about it. So I did.
The article was published in their May-June 2012 newsletter: http://www.focus-ga.org/wp-content/uploads/2012/05/2012.may-june-newsletter.pdf
It was by no means meant to hurt anyone's feelings, or make anyone feel guilty. It is simply the truth about how I sometimes feel, and I think a lot of parents in our situation feel, and I wanted to write about it because the FOCUS newsletter is primarily meant as a resource for parents and it's encouraging to know that you are not alone.
Since the goal of this blog is to bring insight into what our lives are like, I decided to include the article here.
We have attended a few events they offer for medically fragile children, but most often they visit us in the hospital. During one visit back in January, I was having a rough day. The isolation that this life can bring sometimes hits you like a ton of bricks. Sitting in a hospital room for weeks on end by yourself can bring you down, though I try and keep myself busy and not have too many pity parties. On this day I was having a party, and my friend from FOCUS suggested I write about it. So I did.
The article was published in their May-June 2012 newsletter: http://www.focus-ga.org/wp-content/uploads/2012/05/2012.may-june-newsletter.pdf
It was by no means meant to hurt anyone's feelings, or make anyone feel guilty. It is simply the truth about how I sometimes feel, and I think a lot of parents in our situation feel, and I wanted to write about it because the FOCUS newsletter is primarily meant as a resource for parents and it's encouraging to know that you are not alone.
Since the goal of this blog is to bring insight into what our lives are like, I decided to include the article here.
Wednesday, February 1, 2012
Thank you, Mr. Santorum
Some of you may be aware that Republican presidential candidate Rick Santorum has a three year old daughter, Bella, with special needs. She has Trisomy 18, which is a genetic condition caused by the presence of all or part of an extra 18th chromosome. He has described her health as "always quite frail and unexpected" and talked about how "one cold" can make her gravely ill.
Sounds familiar.
Recently in a web video released by his campaign, Mr. Santorum said, "I look at the simplicity and love she emits and it's clear to me we're the disabled ones."
This resonated with me. Big time.
There are a lot of things Ella can't do that she *should*. She can't talk. She can't walk. She can't even eat by mouth. She requires a tracheotomy to maintain her respiratory status, a feeding tube for her nutrition, and, most recently, had a vesicostomy placed to keep her bladder drained in an effort to reduce urinary tract infections. At nearly four years old, there isn't really anything she can do for herself.
But within her disability lies amazing abilities that typical people - the "we're" that Mr. Santorum refers to in his quote - can not achieve.
She can truly love unconditionally.
She can charm even the hardest heart with a single smile.
She is often the ONLY thing in this world that can bring a smile to my face in the darkest of times.
She has the ability to make people fall in love with her at first sight. I have seen it over and over again. They may not remember me, but no one ever seems to forget Ella. I have witnessed the amazing effect she has on seemingly everyone so many times. She continues to amaze me every day.
Getting back to what she can't do, there are things that seem to be second nature to typically-abled people that I am grateful she doesn't have the ability to do.
She could never hurt your feelings, or make you feel bad.
She could never physically harm another person, nor does she have the ability to want to.
She has been through more physically in her almost four years than most people will endure in a lifetime: surgeries, examinations, therapies, procedures, illnesses, and endless poking and prodding. Though she may feel pain in a moment, she does not have the ability to carry that with her. She doesn't have the ability to remember or to become bitter. Or to feel sorry for herself.
How amazing is that?
So yes, Mr. Santorum. I completely agree. It is certainly clear to me who the disabled ones are, and we can learn an awful lot from people with disabilities.
Sounds familiar.
Recently in a web video released by his campaign, Mr. Santorum said, "I look at the simplicity and love she emits and it's clear to me we're the disabled ones."
This resonated with me. Big time.
There are a lot of things Ella can't do that she *should*. She can't talk. She can't walk. She can't even eat by mouth. She requires a tracheotomy to maintain her respiratory status, a feeding tube for her nutrition, and, most recently, had a vesicostomy placed to keep her bladder drained in an effort to reduce urinary tract infections. At nearly four years old, there isn't really anything she can do for herself.
But within her disability lies amazing abilities that typical people - the "we're" that Mr. Santorum refers to in his quote - can not achieve.
She can truly love unconditionally.
She can charm even the hardest heart with a single smile.
She is often the ONLY thing in this world that can bring a smile to my face in the darkest of times.
She has the ability to make people fall in love with her at first sight. I have seen it over and over again. They may not remember me, but no one ever seems to forget Ella. I have witnessed the amazing effect she has on seemingly everyone so many times. She continues to amaze me every day.
Getting back to what she can't do, there are things that seem to be second nature to typically-abled people that I am grateful she doesn't have the ability to do.
She could never hurt your feelings, or make you feel bad.
She could never physically harm another person, nor does she have the ability to want to.
She has been through more physically in her almost four years than most people will endure in a lifetime: surgeries, examinations, therapies, procedures, illnesses, and endless poking and prodding. Though she may feel pain in a moment, she does not have the ability to carry that with her. She doesn't have the ability to remember or to become bitter. Or to feel sorry for herself.
How amazing is that?
So yes, Mr. Santorum. I completely agree. It is certainly clear to me who the disabled ones are, and we can learn an awful lot from people with disabilities.
Tuesday, November 29, 2011
Reality Check
It's transition time in our household. It's both a blessing and a "curse" that Ella is of a more typical size than most children with her syndrome. We don't have to worry about pushing extra calories or being on the receiving end of disapproving looks from some in the medical community who don't get that most children with CdLS are much smaller; but we do have to deal with mobility issues much earlier than most. And that is where we are.
I had hoped she would be able to move herself around somewhat by this age, but the reality is that she still cannot sit up unassisted. It's not from a lack of trying. No, she wants to go! Badly! But her little body just can't make things work together in the right way just yet. So as she approaches 30 pounds and 3 feet tall, we are forced to transition from "baby" equipment to mobility equipment designed for handicapped children, which means many adjustments need to be made in our home and to our vehicle.
Ella has moved from her floor-sitting high chair to her wheelchair while we wait for her special seat to come in. We still use a carseat and stroller for (the few) trips we make with her out of the house, but we need to add a ramp to our van to be able to use her wheelchair while transporting her in the near future.
We also have a gait trainer coming which I am very excited about. Ella's legs are very strong and this will allow her to "walk" and move around the house on her own, ideally. It is both an amazing and terrifying possibility!
We are also planning to renovate part of our home to make a therapy/play room for Ella and her equipment, which takes up a lot of space. It will also give John and me more privacy when there is a nurse in our home helping us out. Her bedroom remains upstairs which is another obstacle we will have to overcome at some point. But we are managing to carry her up and down for now.
I'm having to adjust to the idea of having a noticeably handicapped child. And it's not that I really care what other people see or think; it's more that I had hoped she would be further along by now. But I also have to remind myself to be thankful that we still have that hope to hold onto as she holds so much potential. We just have to be patient.
I had hoped she would be able to move herself around somewhat by this age, but the reality is that she still cannot sit up unassisted. It's not from a lack of trying. No, she wants to go! Badly! But her little body just can't make things work together in the right way just yet. So as she approaches 30 pounds and 3 feet tall, we are forced to transition from "baby" equipment to mobility equipment designed for handicapped children, which means many adjustments need to be made in our home and to our vehicle.
Ella has moved from her floor-sitting high chair to her wheelchair while we wait for her special seat to come in. We still use a carseat and stroller for (the few) trips we make with her out of the house, but we need to add a ramp to our van to be able to use her wheelchair while transporting her in the near future.
We also have a gait trainer coming which I am very excited about. Ella's legs are very strong and this will allow her to "walk" and move around the house on her own, ideally. It is both an amazing and terrifying possibility!
We are also planning to renovate part of our home to make a therapy/play room for Ella and her equipment, which takes up a lot of space. It will also give John and me more privacy when there is a nurse in our home helping us out. Her bedroom remains upstairs which is another obstacle we will have to overcome at some point. But we are managing to carry her up and down for now.
I'm having to adjust to the idea of having a noticeably handicapped child. And it's not that I really care what other people see or think; it's more that I had hoped she would be further along by now. But I also have to remind myself to be thankful that we still have that hope to hold onto as she holds so much potential. We just have to be patient.
Sunday, October 16, 2011
Living on the Edge
Today a mom is acting as nurse and doctor to try and keep her child out of the hospital.
Today a mom is sitting at her child's bedside in the hospital longing to take her home.
Today a mom is burying her 5 year old daughter.
These scenarios are common on any given day when you are living "this life". My news feed on Facebook provides stories like these far too often reminding us all that we are never too far from the edge ourselves.
There was news this week of yet another one of our special little friends passing on. I can easily count at least six children since this summer. Tomorrow isn't guaranteed for anyone, but when you have a medically fragile child you are always aware of how things can go downhill in the blink of an eye.
How do you cope? Everyone is different, but here are some of the ways I know of:
Some take medication - you know, "better living through chemistry"? I'm not ashamed to admit that I NEED it to get by, although I wish I didn't.
Some have vices like alcohol, food or cigarettes. It's not anything anyone wants to admit, but these are often the easiest things to access that might relieve some of the stress instantly. Most of us are not very good at taking good care of ourselves. By the time we make sure our children have what they need, there is nothing left most days.
Some rely heavily on their faith, though some wrestle with it. There is nothing worse than seeing your own child struggle so it's no wonder that even those with very strong faith sometimes question why such things can happen to their children.
Mostly, we spend a lot of time venting to and leaning on each other in the virtual world. Chances are if you have a MF child you don't have many friends in real life in the same situation. I believe that the internet has saved many of us from ourselves by allowing us to connect with each other so easily and honestly. I'm really not sure how moms like us made it before things like listservs, discussion boards and Facebook came along.
Thankfully we have each other to lean on when our children are sick or leave us, and to pull each other back when we get too close to going over the edge ourselves.
Today a mom is sitting at her child's bedside in the hospital longing to take her home.
Today a mom is burying her 5 year old daughter.
These scenarios are common on any given day when you are living "this life". My news feed on Facebook provides stories like these far too often reminding us all that we are never too far from the edge ourselves.
There was news this week of yet another one of our special little friends passing on. I can easily count at least six children since this summer. Tomorrow isn't guaranteed for anyone, but when you have a medically fragile child you are always aware of how things can go downhill in the blink of an eye.
How do you cope? Everyone is different, but here are some of the ways I know of:
Some take medication - you know, "better living through chemistry"? I'm not ashamed to admit that I NEED it to get by, although I wish I didn't.
Some have vices like alcohol, food or cigarettes. It's not anything anyone wants to admit, but these are often the easiest things to access that might relieve some of the stress instantly. Most of us are not very good at taking good care of ourselves. By the time we make sure our children have what they need, there is nothing left most days.
Some rely heavily on their faith, though some wrestle with it. There is nothing worse than seeing your own child struggle so it's no wonder that even those with very strong faith sometimes question why such things can happen to their children.
Mostly, we spend a lot of time venting to and leaning on each other in the virtual world. Chances are if you have a MF child you don't have many friends in real life in the same situation. I believe that the internet has saved many of us from ourselves by allowing us to connect with each other so easily and honestly. I'm really not sure how moms like us made it before things like listservs, discussion boards and Facebook came along.
Thankfully we have each other to lean on when our children are sick or leave us, and to pull each other back when we get too close to going over the edge ourselves.
Thursday, June 16, 2011
A Fine Line
One of the things we struggle with a lot is how to balance doing typical things with being cautious of Ella's medical issues. There seems to be a very fine line between being *normal* and being irresponsible when you have a medically fragile child.
Take going to the pool, for instance. I don't normally take Ella to the pool with me because, frankly, it's difficult to take Ella anywhere! But with pool season in full swing I found myself a little jealous of the other families playing together in the water and selfishly wanted to have Ella there too.
We do all of the usual things to get ready for the pool: put on her swimsuit, apply sunblock, get her a sun hat and glasses. But trach's don't mix well with water. Precautions are taken every day to simply bathe Ella, so putting her in a large body of water is risky since the trach tube leads directly to her lungs.
Aside from the fact that we need to be cautious of keeping the water below a certain level (and not dropping her of course!), we have to factor in the conditions we cannot control - like other people splashing and making waves. One little slip by anyone and we could have an emergency on our hands. So you have to ask yourself, is it really worth it?
I think it's like the saying that you've got to "live while you're alive". If you don't have any experiences at all, is that really living? So I'm trying to make a point to do more typical activities with Ella now that we have surrendered to the trach (meaning we've accepted that it's not going anywhere for a while), but it is definitely a struggle.
In a few months Ella will be going to school. Because of her medical conditions, we were given the option of receiving school services at home which was my original plan. But I know Ella will love school; she loves people, and it will be great for her development. Of course I'm worried sick about something happening while she is there or her picking up an illness, but I want her to live as normal a life as she can and experience things that a typical child would. Just don't expect to see me putting her on the school bus and waving goodbye!
Take going to the pool, for instance. I don't normally take Ella to the pool with me because, frankly, it's difficult to take Ella anywhere! But with pool season in full swing I found myself a little jealous of the other families playing together in the water and selfishly wanted to have Ella there too.
We do all of the usual things to get ready for the pool: put on her swimsuit, apply sunblock, get her a sun hat and glasses. But trach's don't mix well with water. Precautions are taken every day to simply bathe Ella, so putting her in a large body of water is risky since the trach tube leads directly to her lungs.
Aside from the fact that we need to be cautious of keeping the water below a certain level (and not dropping her of course!), we have to factor in the conditions we cannot control - like other people splashing and making waves. One little slip by anyone and we could have an emergency on our hands. So you have to ask yourself, is it really worth it?
I think it's like the saying that you've got to "live while you're alive". If you don't have any experiences at all, is that really living? So I'm trying to make a point to do more typical activities with Ella now that we have surrendered to the trach (meaning we've accepted that it's not going anywhere for a while), but it is definitely a struggle.
In a few months Ella will be going to school. Because of her medical conditions, we were given the option of receiving school services at home which was my original plan. But I know Ella will love school; she loves people, and it will be great for her development. Of course I'm worried sick about something happening while she is there or her picking up an illness, but I want her to live as normal a life as she can and experience things that a typical child would. Just don't expect to see me putting her on the school bus and waving goodbye!
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