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Wednesday, November 24, 2010

Giving Thanks

It's Thanksgiving...time to reflect on life, count our blessings and think about where we're headed.

Everyone experiences ups and downs, but when you have a special child they tend to happen more frequently. The plus here is that though there are some deep and frequent lows, it makes you appreciate the highs that much more. And if we weren't on this crazy rollercoaster ride, we would have missed out on meeting some of the most wonderful people in this world.

They say you find out who really has your back when the going gets rough and, well, the going is often rough around here. But we are blessed to have the most supportive friends and family to help us through who would do anything for us and our sweet Ella.

We are also thankful to have some of the best doctors, therapists and nurses to help us care for Ella. Not only do they take great care of her, they are truly concerned about her well-being and really want to see her succeed. It's an amazing thing to have so many people love and care for your child in this way.

One of the biggest lessons I have learned along the way is how valuable it is to connect yourself with people in a similar situation as you, and I am honored to be a part of the special needs parents group. People say to us fairly often that it takes 'a special kind of person' to do what we do, and they are right. I believe we are specifically chosen to care for these precious and fragile children, and we understand that it's a priviledge to raise them though others might not see it that way...it's our little secret. I am so very thankful to be a part of this group, and for the opportunity to connect with other parents online the way we are able to these days. Nothing eases the soul better than knowing you are not alone.

I am most thankful for my special child who has shown me what true, unconditional love is. I'm thankful for her resillience and her determination. I'm thankful for those big blue eyes that tell me how much she loves her mommy when her disability won't let her verbalize it. And I'm thankful that He thinks enough of me to trust me with this precious child.

Tuesday, October 26, 2010

Family Vacation

Yes, I've been away for a while. Not on some fabulous trip unfortunately, but the past few months I've been away from the blog have been bookended by two attempts at a family vacation - the latter finally being successful.

Going on "vacation" (in quotes because I am using the term very loosley!) with a medically fragile child is no small feat. Some may even call us crazy to attempt it as much as we do. The last successful trip - meaning Ella did not get sick during or immediately following - was in April earlier this year. We literally packed the car, picked her up from the hospital where she was ending a two-week stay and headed down to my family's place at the beach. We figured coming off of an illness was a good time to go for it since we typically get a break for a month or two between hospitalizations. It worked!

Now, packing for a medically fragile child is nothing short of ridiculous. There are trach supplies, feeding supplies, medicines, equipment for providing heat and humidification at night, oxygen tanks, etc. The list seems endless and it has taken me up to 3 hours to pack her up to go somewhere. So to say we have to be really committed to take a trip is an understatement!

Besides the packing, we leave behind our nurses who assist us in caring for Ella at home. This is the main reason I use the word "vacation" so loosely because we actually get less rest and time off from her care than if we were to stay at home.

To give you an idea, a typical day with Ella starts with getting her up out of bed and dressed. Sounds normal enough, right? First there is the suctioning which I have mentioned before and again, will spare you the details. Suffice it to say it's not a pleasant task and she can be quite "junky" in the mornings. She needs to be removed off her nighttime equipment, a heated trach collar, which includes a heater, air compressor and sometimes O2. Trach care must also be performed, and then we can move on to more typical things like picking out a cute outfit and matching bow and fixing her hair. But then it's time to move her and her equipment (pulse ox, feeding pump) downstairs and do her nebulizer and chest physio-therapy treatments. Once that's done, it's time for morning meds (I think we're at a total of nine right now including her inhalers). She is usually ready for a nap mid-morning which works out well because we are, of course, also exhausted by this point!

At 11 a.m. it's time for her first bolus feed - this includes preparing the formula, priming and setting the feeding pump, turning off the pump, flushing the feeding tube, etc. She has two additional feeds during the day at 3 p.m. and 7 p.m. At some point we'll get a bath in followed by another trach care session, nebulizer and chest PT, and at 9 o'clock it's time for nighttime meds (a total of 10). Soon after it's time to put her back to bed - take her and her equipment back upstairs, set her nighttime feed, put her back on heated trach collar, etc. Then pray she sleeps all night which unfortunatley has become a more rare occasion lately.

Are YOU tired yet?! So you get the idea...

We had a foiled attempt at "vacation" in June of this year due to the oil spill since it wasn't a good idea to take a trached child to the shore where the air was filled with fumes and such. But by Labor Day we felt conditions had improved enough to try again. So we did. After packing, driving 6+ hours and spending one night, we woke up with a very, very sick child and were forced to retreat back to our home-base hospital where she spent the next two weeks fighting pnuemonia.

Typically, if Ella gets sick it follows a trip which isn't "good" but at least we are home or on our way home. This time, we hadn't even started our vacation and after all that planning and preparing, we had to pack it in and head home - one of my worst fears come true! And it was pretty depressing sitting in ICU with your child instead of at the beach, but this is our life.

Recently we found it within ourselves to try again and I am happy to report all went smoothly!

But no, "vacations" at this stage are not very relaxing for us, however the opportunity to be with family, smell the ocean air, eat some delicious seafood and just get away from appointments and work for a bit certainly evens things out.

Sunday, August 29, 2010

Next year...

Hope floats. Isn't that what they say? I guess it means that amidst all of the other 'stuff' in life, hope rises above and if we hold on to it, helps us to keep our head above water when things get tough.

As a parent, the most difficult thing to endure is watching your child hurt in any way. All children face obstacles, rejection and disappointment in life and all children face physical and emotional pain. I think being a special needs mom is like "motherhood on steroids" because we experience this pain with our children on a more regular basis. There are more roadblocks and setbacks. Many times we take one step forward just to take three giant leaps backwards. You get knocked down, but you get back up and keep pushing forward.

So what keeps us moving ahead when it would be so much easier to just sit down and cry? It's hope. We have to believe that tomorrow is going to be better in order to get through today.

I find myself saying "next year" a lot when talking about things we haven't been able to do as a family with Ella Grace:
"Next year we will be able to go there..."
Or "Next year we can bring her here..."

I also say it (although mostly to myself) about her development:
"Maybe next year she will sit, crawl, etc."

And I say it about her health:
"Next year she won't be in the hospital as much..."

What I'm saying is that I'm hopeful of these things for our future. Of course there are no guarantees in how things will work out, but without hope we're just left swimming in that sea of 'other stuff' and that's not where I want to be.

Wednesday, August 18, 2010

How we knew

One of the questions I get asked the most is how we found out we were going to have a special child. Let me start by going back to 2004. This is when John and I found out that we were pregnant with our first child due in August of 2005.

During a routine ultrasound in February of that year we learned that our baby had a large fluid filled cyst on the back of her head called a cystic hygroma and could also possibly have Turner's Syndrome. We were referred to specialists and several weeks of hell ensued consisting of numerous ultrasounds, doctor consultations, an amniocentesis and a whole lot of not knowing what to expect.

During this time I was a complete basketcase to say the least. We didn't know what the diagnosis meant exactly but knew that our baby could be born "different". I remember very clearly sitting on the couch with my mom who had come to be with me (as she always does) and crying uncontrollably saying, "I can't have a child with something wrong with it...I just can't." And I didn't. The baby's condition was fatal and we lost her on March 4, 2005.

As terrified as I was at the thought of having a child that was different, I was still completely devastated...and angry. And I stayed that way for the next few years. I did seek the support of other women who had also been through a loss which helped, and I was blessed to make an AMAZING lifelong friend out of it (you know who you are!). I found that most of us fell into one of two categories: either wanting to try again for another baby as soon as possible, or not even wanting to think about it. I fell into the latter category.

Then in September of 2007 we found out we were pregnant again. Shock, excitement and overwhelming fear were among the gamut of emotions we felt. Like most women, the first 12 weeks were met with tenuous optimism but we eventually made it through the first trimester and began feeling some relief. The next hurdle was 16 weeks - the same stage when we learned the fate of our first baby. Then it was 20 weeks - the time when we lost our first baby. After that I actually began to feel pretty confident that things were going to be okay. But I had forgotten about February - the same month we got the news about the first baby. So here we are, February of 2008. I'm 26 weeks along, going in for another routine ultrasound and it happens AGAIN. It's never a good sign when your ultrasound tech gets really quiet and excuses herself to get the doctor.

This time we were told that our baby's head was measuring small (3 weeks behind to be exact) and we would need to see a perinatologist. Oh here we go again. A small head? What does that mean? If it has to do with the head, it can't be good...

We learned the medical term for this condition which is microcephaly, and the doctor also told us she appeared to have a recessed chin. He informed us that when two or more anomalies are detected it's indicative of a syndrome and we were referred to a geneticist. She measured our heads, took a complete family history and told us there were 246 different syndromes that our baby's particular anomalies could be related to, and we would just have to "wait and see" (and endure high level ultrasounds every few weeks to measure her head) until she was born. We were 14 LONG weeks away from her due date. Google became my worst enemy as I spent hours and hours researching every syndrome that appeared for the search terms "microcephaly" and "micrognathia" (recessed chin). I just wanted to know what to expect so I could prepare myself. I just wanted to know if she would live.

Just shy of 36 weeks I began having contractions so John took me to the hospital where they stopped them with medication and told me they would like for her to wait at least one more week. Well, anyone that knows Ella knows that she plays by her own rules and so three days later I officially went into labor. After 21 hours, Ella Grace was born via C-Section weighing 5 lbs. 1 oz and measuring 17 inches long. In my drug-induced state I could only mutter the words to ask John if she "looked normal" before I got a quick glance of her myself and she was whisked away to the NICU.

It wasn't until the next day that I was able to see her. I couldn't believe all of the things the doctor had said about her were true when I finally got to lay eyes on this beautiful child. I knew she was going to be okay and I did not care what they said she had "wrong" with her. She was my baby, she was beautiful and it was love at first sight - well, maybe second sight in my case due to the circumstances! And most of you know how the story goes from there.

The best way I've heard it described as to what it's like having a special child is an essay written by a woman named Emily Perl Kingsley called "Welcome to Holland":

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

(c)1987 by Emily Perl Kingsley. All rights reserved

So I believe now that back in 2005 I was getting ready to board that flight but just wasn't quite ready for the journey. There were other plans for me. I do believe that as cliche as it sounds everything does happen for a reason - no matter how bad it may seem at the time, there is a reason. I was being prepared for this journey with Ella Grace and though the loss of our first child is still painful, it is what was meant to be. We finally got to Holland and let me tell you, it is breathtaking.


EG's first picture



I finally get to hold her

Thursday, August 12, 2010

You can't go it alone

Technology is such a wonderful thing. Because of it, I am able to instantly connect online to hundreds of moms like myself who have a medically fragile/special needs child. I wonder how moms like us "back in the day" got by without having this luxury because I honestly don't know how I'd get along without it.

CdLS is a very rare syndrome so there are not a lot of families around to connect with physically. But I can jump on the computer and instantly be in touch with hundreds of other CdLS parents and I am so thankful for that. We share experiences, offer advice and lend support to each other. There are so many of us on Facebook I'm surprised we haven't shut down the site!

The information and words of encouragement I receive from my fellow CdLS'ers means so much to me. This past week has been exceptional in particular as we face one of the most important days in our lives with Ella Grace's sleep study to determine if the trach can be removed. The way everyone has rallied together for us has been remarkable. I logged on to Facebook the other day to find that just about everyone had posted our circumstance and prayer request as their status...it was completely overwhelming. With tears in my eyes I scrolled through post after post after post with people who have never even heard our names before replying that they will be praying for Ella Grace and our family. Wow.

I know I am biased but CdLS moms in particular are truly amazing. Our children are so rare and complicated it really takes a lot to manage their care and I am so impressed with how in tune and smart and determined all of these women are. It's funny how we are so much alike...coincidence? I think not.

We were fortunate enough to get to meet a lot of these families face to face a few months ago at the national CdLS conference in Dallas and it was unreal how we all just "clicked". I loved them before I met them in person but now we are truly family. It's incredible how God brings people together; it's so obvious that it was no accident and I feel so blessed to be a part of this amazing group of people.



CdLS "Facebook" moms at the national conference

Thursday, August 5, 2010

"I don't know how you do it!"

I really wish I had a dollar for every time I heard that! I think most of the time it's meant as a compliment, but sometimes it can feel like pity. Sometimes there is a fine line between pity and empathy - feeling sorry for us versus just feeling for us - and it's an important difference.

I also don't feel like I do anything most moms wouldn't do for their child in the same situation. And I wouldn't trade it. Is it completely overwhelming, emotionally draining and unbelievably exhausting? Well, yeah! But so is motherhood for any mom at times, just more often for us SNPs.

And when I say that I wouldn't trade it, I really do mean it.

I honestly don't wish for Ella Grace to be "normal" but I do pray for her to reach her fullest potential wherever that may be compared to what is considered normal.

I don't want her to have to change who she is for the world, I want the world to change the way it looks at people like her who are different. Just like any other parent, I just want my child to be happy and to feel loved and accepted.

There was a video going around among us SNPs a few months ago about our kids with the following message:

I am...
happy
strong
determined
awesome
a blessing.

Don't be sad...
I'm not!


(See the video)

I think that pretty much sums it up. Ella Grace is the happiest person I know, always laughing and smiling. She's not sad and neither am I. As long as she is healthy and I see that smile on her face, all is right with the world.

And while I appreciate the recognition for "being such a good mom" I didn't sign up for this - I wouldn't change it, but I didn't sign up for it. It was assigned to me. God gave us a special child for a reason so I wear my SNP status like a badge of honor and do my best to fulfill the purpose given to me through Ella Grace.

Thursday, July 29, 2010

Trach Jail

We have been in "trach jail" for exactly 671 days. Ella Grace had her tracheotomy in September of 2008 at the ripe old age of 5 months. Most of the things we have been subjected to on our journey with Ella are not common for most parents such as feeding tubes and oxygen, but the trach certainly takes the cake.

As I write this, Ella Grace is scheduled to have a sleep study on August 11th to determine whether or not she can be decannulated (i.e., trach removed). So as we hopefully near the end of life with a trach, and because it's such a rare thing, I thought I would offer a glimpse into what life with a trached child is like.

There are many specific reasons why someone may require a trach but the simple explanation is that it provides an alternative airway to the nose or mouth. In Ella's case, her airway was so tiny and fragile as an infant the doctors were unable to intubate her for surgery so it was a necessity. And because we knew she would need future surgeries, and because she was also diagnosed with sleep apnea at that time, we had to keep the trach. Nearly two years later Ella barely resembles that tiny baby in the ICU (see pictures below) but the trach unfortunately remains!

I not-so-affectionately refer to life with a trach as "trach jail" because our family is indeed imprisoned by it. No one explains to you beforehand what to expect of having a trached child (not that there is always even time to) but I think that's actually a good thing. It's probably better to let us gradually realize the enormity of the situation rather than to lay it all on us at once. I'm sure if they did 99.9% of us would go running for the hills and they probably know that.

Before you can leave the hospital with your trached baby, you must complete several hours of training including trach care and learning about all of the equipment and supplies that go along with it. When we were finally able to bring Ella home and the medical supply company began delivering it all I was in shock...how could one tiny hole require such a massive amount stuff?! Turns out that in addition to physically invading our living space, the trach also keeps us from doing a lot of normal things as a family.

For the most part, Ella Grace only leaves the house for doctor's appointments which is pretty often, but not very fun! All of her therapies are provided in the home and we have home nurses who help us care for her during the day. Besides the fact that I look like a pack mule with all of the stuff Ella requires to have with her when we go out, the risk of infection is greater with a trach so less exposure to public places and people is best and Ella spends most of her time at home which means family outings are very rare occasions but we attempt it every now and then.

As most parents do, John and I also find that we would like to leave the house as a couple from time to time, but when you have a child with a trach a willing friend or even a highly-recommended babysitter just won't do. Only someone who has the proper training can watch Ella and in our world that includes only my husband, myself or one of our home nurses. Unless we have a nurse to watch her, we can't leave the house at the same time. (Thank God for our home nurses!)

The general care that comes along with a trach can also be overwhelming. Trach care must occur twice a day including cleaning the areas and changing the ties (that hold the tracheotomy tube in place) around her neck once a day. Close monitoring of the neck and stoma are also required and there are creams, powders and gauze pads to help us maintain it. The trach itself must be changed out once a week, or sooner if she gets sick. Trach precautions must be used while bathing - no water can go down that hole! Suctioning is one of the least fun activities associated with a trach and I'm sure it sounds disgusting to an outsider so I won't go into detail. At night Ella is placed on a ventilator for pressure support/C-PAP and provides warm, humidified air to the trach. We also have oxygen on hand in case she ever needs a little help. And because risk of infection is higher with a trach, and she does get sick more often, hospitalizations are very frequent.

So please, say a little prayer that we'll be paroled in a few weeks for good behavior (we have been good, right?) and I will look forward to writing a future blog about life AFTER trach when we are free at last!

Thursday, July 15, 2010

Fireworks through the Trees

This past 4th of July was an off day for me. For the most part, those "pity party days" are fairly few and far between, but they still come on...usually right out of nowhere.

We were glad to have gotten Ella Grace home from the hospital that Friday, and she was doing well. After Nana and I procured her 4th of July outfit, I was excited to take her to church and show her off that morning - a rare non-medical related outing. But just before it was time to leave Ella fell asleep and, still recovering from tracheitis, began to require oxygen so church was now out of the question and we stayed home all day.

At around 6 p.m. our night nurse arrived so John and I were able to leave the house which I was sure was going to make me feel better. At this point, I just wanted to see some dang fireworks!

Upon arriving at the park, I quickly realized this was not a good place for me to be in my funk. It was full of families with the children dressed up in their 4th of July outfits running around, looking cute, and having a blast. I managed to stop the tears with a rack of ribs, and made an effort to try and not focus on the fact that Ella Grace wasn't with us, but it wasn't easy.

After a few hours of rib-eating, sulking and people watching, dusk began to fall and it was finally time for fireworks. Since we had never been to see them at this park before, we didn't know what position we should be in. We picked up our chairs and began wandering around. We headed towards the crowd with the most people and stopped at a spot that happened to be vacant (coincidentally, right next to a trash can) and set up camp. Just then, a "warning shot" was launched and we realized that not only was our spot smelly, but our view was going to be blocked by a giant tree.

With the show now starting, we picked up our chairs and moved again to get a better view and found another spot that seemed to be suitable to settle in for the show. Once we sat down, we realized that our view was still being partially blocked by a smaller tree but we could see pretty well through the branches. With the crowd and the show now in full-swing, I told John we would just stay put when he started to get up to move again.

As I engaged in the fireworks through the limbs of the tree, my mind began racing with all kinds of thoughts: how happy I am to live in this country, how thankful I am to have John still sitting beside me, and how much Ella Grace would love the fireworks. There were times when the fireworks were launched high enough that the tree no longer blocked our view, and there were times when they weren't launched very high at all and we could hardly see them. But for the most part, they were launched somewhere in the middle and we still had a pretty good view. I even forgot that the branches were there at times.

I looked around at the other families who appeared to have a clear view and starting thinking to myself how this was a lot like being the parent of a special needs child. You still get to go to the fireworks, they are still spectacular, but your view is different. The experience was certainly not the same for me as the other moms there who were holding their children on their laps and able to see the awe on their little faces. Though my lap was empty, my heart was full. I told myself that next year Ella will be with us, she will be older and healthier and she'll have an EVEN cuter outfit!

Who knows if it will work out this way, our plans rarely do these days, but that's okay. Hope for the future and appreciation for the blessings we have today is what gets us through. While our view may not appear to be ideal to others, we are still glad to be at the show.

Thursday, July 8, 2010

"Where Everybody Knows Your Name..."

This song (the theme from Cheers) pops into my head every time I enter the children's hospital. I have lost count of the number of days that Ella Grace has been hospitalized, but I do know that we've never gone longer than three months at home continuously so my best guess is that it ranges somewhere between 1/3 to 1/2 of her life.

At first it's awful. After you give birth, the hospital wants to get you out of there as quickly as possible but keep your four-day-old, barely-five-pound infant for an indefinite amount of time. I will never forget that night leaving the hospital for the first time after I was discharged to drive 20 miles home while Ella Grace stayed in the NICU. It was heartwrenching. But over time, leaving Ella at the hospital gradually became a normal part of our abnormal life.

We are lucky to have access to such great care where we live for which I am very grateful and our proximity to the children's hospital is very good - I know of families that have to drive hours to get their child to an appropriate care facility. And once you become a regular (or "repeat offender") at the hospital, you start getting known by the people who work there so when you go, it becomes a homecoming of sorts. You begin to know basically all of the nurses and doctors and they are glad to see you (not glad you have to be there, but glad to see you) so it's kind of like we're just visiting old friends.

There is the usual cast of characters at the hospital including our doctors, nurses, and therapists, but some of my favorites are the "extras" like "The French Fry Guy" who I repeatedly see in the cafeteria loading up an entire styrofoam container full of french fries every single time. I must admit I am a bit jealous of his devil-may-care attitude when it comes to indulging on that greasy golden goodness since I myself feel like diving into an entire pool of fries at times. And there really is no concept of calories during a hospital stay anyhow. "Treats" are a hallmark of any stay, and the amount and nutritional value of those treats directly coincide with the length and severity of the stay.

The wonderful ladies from the FOCUS (Families of Children Under Stress) group always stop by with chocolate and other goodies without fail. Boy do I love those gals. The longer you stay, the more chocolate they bring you. They get it.

Then there is the lady at the front desk who always gives me a smile and makes friendly conversation as if she's known me for decades even though we've never had a 'real' conversation. Turns out that lady is actually a twin and they both work at that desk at different times. I only realized there were two of them when I saw them together in the cafeteria one day. That really freaked me out. I cannot tell them apart for the life of me but still think "she" is really nice.

There are also the security guards, the sweet old ladies in the gift shop, the child life volunteers, and the chaplains who always come by to say hello.

Coming by to see Ella while she is in the hospital is a must for many people who have met and/or cared for her in the past when they get word she is there. Because Ella has a trach and is on C-PAP at night through a ventilator, she must stay in ICU. We've been in all the ICU's (pronounced Ick-U's)...NICU, PICU, TICU, so she is pretty well-known in the ICU community. During any given hospitalization a random someone will inevitably pop in to say, "I heard Ella was here!" and demand to see what she is wearing.

Since the very beginning my mom (Nana) and I have made dressing Ella in adorable outfits with matching bows in her hair an Olympic event, and she has become notorious for her fashionable-ness. (Plus she is pretty darn cute!) So she has definitely earned the title of "Best Dressed Baby in the ICU" and that is why I felt it was appropriate to be the title of my blog.

Dressing Ella is one of the few things we can find joy in during a hospital stay (aside from the chocolate) and at this point, frankly, we have a reputation to uphold! Just last week while Ella was in for a trach infection I was nearly scolded for not having gotten a 4th of July outfit for her yet when asked what she would be wearing for the big holiday.

In her off-time, when she is home, Ella still looks just as cute every day with a giant matching bow in her hair. So we'll just enjoy dressing her up for our own entertainment here at home for the next 1 to 89 days until our next hospital debut.

Sunday, July 4, 2010

The Blog is Back/Lessons They Don't Teach You

So here goes blogging again. You can still follow Ella Grace's progress and medical updates via her Caring Bridge site at www.caringbridge.org/visit/ellagracemusial

This blog is now completely devoted to being my online journal as the mom of a medically fragile/special needs child. Life with Ella is hectic and stressful, of course, with all of the doctor's appointments, procedures, therapies, etc. But beyond that, we Special Needs Parents (or SNPs as I will refer to us) experience everyday life and society a lot differently. With this blog I hope to bring some insight and awareness to OUR world so that others can develop an understanding and maybe even change their ideas about families like ours by helping to eliminate "the fear of the unknown". So here goes installment number one...

Lessons they don't teach you in school
I'll admit it. Before I became an SNP I was scared of people that were different. I feared them because I didn't know how to act around them or what to say.

But let's give ourselves a little credit: as humans we naturally fear what we don't understand and it's human nature to be curious about anything that is out of the norm for us. It took me a while after Ella Grace was born to figure this out, but that's why people stare!

In the beginning I would get really annoyed with the stares, like it was a personal attack on my child. But eventually I realized that the majority of people aren't meaning to be rude. They're just caught off-guard and are curious about something that is different from what they normally see like...say, maybe a baby with a feeding tube coming out of her nose?! Did I ever see or know what a nasogastric tube was before Ella Grace was born? Not so much. And unless you're in the medical field, chances are you haven't either. And so lesson #1 was learned.

Lesson #2 came shortly after: most people aren't even aware that they are staring (or "boring holes" as we SNPs may describe it on a bad day). And so I realized that offering a quick smile to the starer can be very beneficial to all parties involved by making "the starer" aware of their behavior either prompting them to feel comfortable to make conversation or to go on their merry way.

The bottom line is that regardless of what is going on with our child, they are OUR CHILD and we are proud of them and love them just as much as we would a typical child. We want to talk about our children but find people in general feel it's rude to ask questions. For me personally, this is not true. I am happy to talk about Ella Grace. I'm not embarrassed. I'm not going to be upset that by asking a question you are pointing out that she is different (we tend to learn this pretty early on from the doctors!) so please, ask away.

Yes, it can get tiring repeating things over and over, and we have our "days", but for the most part we are dying to talk about our kids just as much as you are. And the fact that most people are afraid to talk to us can make our world feel very isolated at times.

So the next time you see one of us around, give us a smile and ask a question or make a friendly comment. Something as simple as "How old is she?" or "That sure is a pretty bow!" can make us feel like we are part of "normal" society and open the door for a conversation.