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 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...
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.