Thursday, December 20, 2012

Is Her Life Worth It?

I have a very special treat for you today. Today's post was written by my friend Maria. Maria is a friend that I've never met in real life, but after countless blog posts, emails, Facebook messages, and instances of mental telepathy (too far?), I truly feel like I have. 

Snarky, hilarious, thought-provoking, insightful- Maria writes from the heart. Hers is a blog that I always make a point to read because I know I'll leave with a smile or "good" tears from an amazingly written post. (Added bonus: frequent pictures of three adorably cute children)

I hope you take the time to read this beautifully expressed post about her journey to acceptance with her daughter who has CdLS. (and if you have no idea what CdLS is, go check out her blog!) While reading what Maria wrote today I cried, smiled, and felt the overwhelming love that she has for her daughter jump through the screen. 

Without further ado:

It's hard to believe it's been one year..

One year since Ella got sick.

One year since they told me "Your baby (who was only eating formula and jarred baby food, mind you..) has Salmonella Poisoning."

One year since they sent us home after a long week in the hospital with slightly sunken eyes and an explanation of "She might be a little dehydrated" but "She should be okay."

One year since I rushed her back to the hospital a mere 16 hours later, asking my then-3 year old the whole way, "Is Ella still awake?" "Are her eyes open?" Is she breathing??"

One year since the doctor told me my 9 month old daughter's kidneys were failing and she needed fluids immediately through an IO (basically a metal straw stabbed into her leg bone) after numerous failed attempts at an IV in her vein. And after that didn't work either, another IO drilled into her other leg bone to get her much-needed fluids.

One year since I sat terrified in that helicopter, listening to the roaring engines and whirling blades above me, waiting to be transported to a larger hospital.

One year since we arrived at the larger hospital, only to find out Ella's tiny little 14 pound body was going into shock from all the stress and she started to show signs of multiple organ failure.

One year since my husband and I went to sleep on the pull out hospital bed in our PICU room, only to be awakened by the nurse and doctor the next morning grimly telling us to "Get up. Get yourself a cup of coffee. Whatever you have to do to wake up. We need to talk."

One year since the doctor told us the devastating news that we could keep doing what we were doing-pumping Ella full of fluids- but it wasn't working. Or try surgery to put a dialysis port in, knowing that wasn't guaranteed to work either and her body might not be strong enough to even survive the surgery.

One year since I held my baby girl for what I thought was certainly the last time and fought back the thoughts trying to silently creep into my mind of wondering what songs we would play at her funeral.

One year since I kissed her sweet little cheek, amid the tubes and wires and monitors and watched them whisk her away to surgery.

One year since I waited numbly in the busy surgery center, curled up in a chair in the fetal position with Ella's pink blankie clutched tightly to my chest, my stomach in knots, threatening to lose its contents at any moment (while my husband munched absently on a stack on cookies beside me...)

One year since I thought my boys would never see their sister this side of Earth again.

One year since we were brought back in a private room when the surgery when finally over, expecting the worst possible news, wondering how I would react.. only to sit in disbelief and listen to the surgeon nonchalantly say, "Everything went good." (Those doctors really should learn to show some facial clues of 'everything went good' when they begin to walk you back to that room..)

One year since Ella's kidneys started to slowly function again and every single wire, tube, machine, monitor that had served such amazing purpose of keeping my daughter alive was removed one by one.

One year since we were overwhelmingly blessed by the complete love and care, thoughtfulness, and generosity of our family, friends, neighbors, and complete strangers.

One year and I finally know why Ella got Salmonella Poisoning. Not HOW.. No no no.. THAT I will probably never know. But why?... I think I have an idea.

I've written about when Ella was first diagnosed with Cornelia DeLange Syndrome (CdLS).. how I really didn't believe what the doctors were saying. I was certain they didn't know what they were talking about. I couldn't believe anything was wrong with my perfect baby. Sure, she might have a few things 'different' about her, but that didn't mean she had some rare genetic syndrome that seemingly no one had ever heard of. I mean.. that wasn't possible. I didn't smoke. Didn't drink. I ate healthy. Took my vitamins. And we prayed for the baby every night. So there. Did you hear me?? We prayed for her. There COULDN'T be anything wrong. There was no possible way our perfect little family could be disrupted by something I thought so tragic as a child with special needs, a child who was different.

Yet, after a few painful months it slowly started to become apparent that maybe those advanced medical degrees really did know a thing or two. Maybe Ella did have CdLS. But that didn't make accepting it any easier.. I didn't want it to be true. I still thought I could wish it, or pray it away. I was tortured by it. I was really in SUCH denial, I couldn't talk about it. I didn't want to tell anyone about it. Didn't want to admit it. In my heart I began to realize she had it, but I somehow thought if I didn't talk about it, maybe no one would even notice and we could go on living our "perfect" little life, without being "tainted" by this defect. And if no one knew about it, God could still just "heal" her and take this horrible thing away, right? And we could go on pretending everything was "normal."

And then last October when Ella got sick (the first time) we had to transport her via ambulance to Sioux Falls. We didn't know what was wrong and it really didn't seem TOO serious.. we just wanted to be in a place that could better get an IV in her tiny veins. The EMT in the ambulance started asking me health questions about her, going through her medical history, etc. I told her all about the heart defect, her small veins, her RSV at a young age and maybe even mentioned the microcephaly.

But I couldn't tell her Ella had CdLS.

I couldn't even tell the EMT she had a genetic syndrome. What was wrong with me?? That could have been a crucial life saving piece of information! But my mind kept racing.. "Well, they think she has it, that doesn't mean she does.. and why should I have to tell this lady, this stranger, and actually spat the words 'My daughter has a rare genetic syndrome.' I mean, if it's that important then I'm sure it's in her file. Why should I have to go through the agony of actually saying that bitter 4-letter word out loud?"

About halfway there I did muster up some courage to semi-mutter the words, "Oh, um.. by the way.. umm.. they think she might have..uh... this thing called... Cornelia De Lange Syndrome... They don't really know for sure, but.. maybe.." I had to fight back the tears while saying it and it broke my heart into a million tiny pieces, but I said it.

Why am I sharing this?

Because as you know, things took a turn for the worse after that. We spent a week in the hospital, learning Ella had salmonella poisoning, were discharged and about 16 hours later were life flighted (via helicopter this time) back to Sioux Falls. She was severely dehydrated, her body was in shock and her organs were shutting down. We spent 2 days pumping her little body full of fluids, only to watch her  body swelling to a very abnormal size due to the damage done to her kidneys.

Things were not looking good.

At one point, surrounded by tubes, wires, monitors, medicines, breathing machines.. I wondered.. "Is this what my life is going to be like from now on?" Is Ella going to spend years of her life in and out of hospitals? Are we going to be making emergency trips like this frequently? Am I going to become a frequent ambulance/airplane/helicopter traveler? Is she going to be hooked up to tubes the rest of her life? What about our other two children? How can they possibly live any kind of normal life? What about other future children? I've always dreamed of having a big family. I was NOT done with 3 kids. How would we possibly manage with Ella's medically fragile condition and having more kids? We had went from spending 2 nights in a hospital total with the boys (not counting their births) to 2 MONTHS in the hospital during Ella's first year. Why would God do this to us??

I sat by her side, looking at her tiny body fighting for her life and painfully wondered "Is it worth it? Is it worth the fight? Is it worth turning our lives upside down for? Is Ella's life worth sacrificing so much of our own? Maybe.. just maybe.. could it possibly be better for her to not make it through this? Would it just be easier that way?"

When the doctor woke us up the next morning with the "We need to talk," speech, we as parents, were put in one of the worst and most important positions of our lives. Making a choice for our daughter that could potentially impact if she lived to see another day.

After much praying/talking/crying we decided we needed to do something. The medicine they were giving her wasn't working and her body was taking on more fluid by the minute. We were watching her get worse and worse, her body becoming weaker and weaker. Her lungs were filling with fluid, her heart was having to work harder.. We couldn't just sit back and watch that, knowing we could be doing more.

But in those moments between that decision and them whisking her away to surgery I realized something life altering.


I wanted her to live.

I wanted her to live more than ANYTHING in the world.


I know this must sound awful, that a parent would finally realize that they don't want their child to die, but if you've never been through it, please don't judge... I realized in that moment that it didn't matter if Ella had tubes coming out of every crevice in her body. It didn't matter if I had to push her around in a wheelchair the rest of her life. It didn't matter if she was mentally retarded, never talked, walked or ate by mouth.
IT DIDN'T MATTER!!

I loved my daughter just the perfect way she was made and I wanted more than anything for her to live.

This is a picture that was taken of my husband, Ella, and I right before she went into surgery. I honestly thought this was the last time I would hold her on this earth.


I've never shown anyone this picture before (so why not start with posting it for the world to see, right??) Looking at it brings back such painful memories, such sharp images of those heart wrenching moments. Ella was wheeled into surgery, looking so so sick. One of the hardest things I've ever had to do-give her one last kiss and watch them whisk her away from me, when I finally knew that I would do anything for her. That it was worth it. Whatever we had to do.. It would be worth it to see that sweet baby one more time.

Those hours in the waiting room while she was in surgery were the worst of my life. I wanted her to live more than anything in the world, yet I felt certain that I had just held her for the last time. The clock ticked by mercilessly slow. Every minute was like an hour. Or two. I had a horrible feeling in the pit of my stomach and I felt like I just knew she wasn't going to make it through the surgery.

But I knew I wanted her to. And I knew my heart would be drastically different if she did.

As horrifically painful as that day was, I think God knew I needed it. I needed to know without a doubt that I loved my daughter no matter what physical, mental, or emotional limitations she might have. I needed to know that I loved her unconditionally. I needed to know that no matter WHAT I would fight for her to live every single day. That even though she was not exactly the baby I had hoped and prayed for, the baby I thought I wanted, she was still perfectly and wonderfully made. That maybe the real problem didn't lie in how "different" Ella's life was going to be, but in how my heart was reacting.

It's been a year. And the changes around here are pretty remarkable-the NG tube is gone, the doctor appointments are back on yearly instead of weekly visits, Ella is oh-so-close to walking, and we haven't had to spend another single night in the hospital. But the changes in my heart are the most drastic. I no longer look at my daughter and see the characteristics of a genetic syndrome that used to plague me, but instead a beautiful individual bursting with life and personality. I no longer see her limitations and the things she "should" be doing, I now see the endless opportunities that await her. I no longer question "Why??" it happened to us. I just feel blessed to have her in our life.

With Ella, I can honestly say I've been through my lowest of lows, and because of that my compassion for others has grown immensely. I have needed help and been reached out to, and I now give more freely to others who are in need. I have been overwhelmingly blessed with kindness and I try every day to "pass it on." I have realized that instead of a blank stare and a wondering look of "what is wrong with your baby?" a warm smile from a stranger can turn your day around. I have learned so much about people with special needs and their families and have opened my heart more than ever would have been possible without Ella.

Nothing about parenting is "easy." In fact, as I type this all three of my children are cycling through some nasty respiratory gunk, fevers, AND a GI stomach bug at the same time.. NOT easy. And parenting a child with special needs, balancing doctor appointments, therapy sessions, and learning so many things you never ever even wanted to know about genetic syndromes, testing, your child's anatomy, or IFSPs and IEP's is definitely not an easy task. But the rewards are there. And they are great. The blessings may look different from those with typical children. They may not come in neatly tied up packages of on-time developmental milestones, picture perfect family photos, and the assumption of an "easy" life. The blessings of parenting a child with special needs may take a little more searching and they may come surprisingly out of the blue like your almost 2 year old taking her first steps one day, or your mostly non-verbal 4 year old telling you 'I love you" out of the blue. But they are there.

Ella's life has been SO much more worth it than I ever imagined and I can say without a doubt, I will never EVER again think "Maybe it would just be easier..."



1 comment:

  1. Thank you for this. I'm currently pregnant and waiting for my ultrasound to make sure everything is okay. All these posts have made me cry (in a good way) and help find a peace in that God knows what he is doing and that everything can and will be okay. God bless both your families and your beautiful, fighter, children.

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