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.
Tuesday, April 1, 2014
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.
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