Thursday, I will turn 34 yrs old, and I feel there is a huge part of me missing.
Matt and I were married in Aug. of 2000. We were like any newly wed couple. We had fun, we grew as one, and we were free to discover our hopes and dreams.
In 2003, our first set of miracles arrived. It was tough being new parents of twins - heck it would have been tough as new parents of ONE! But God blessed us with 2 beautiful babies and our family grew. We were no longer MAN and WIFE, but instead, FATHER and MOTHER. When we weren't sleep deprived, we'd look back and remember that special day when we became MAN and WIFE.
Life was challenging with 2 babies, but for the most part, healthy babies.

I feel as if our life started to slide when Riley had her first overnight stay at Children's hospital. It was truly amazing how far this child could vomit.
It was the first time my "virgin" ears had heard the words PROJECTILE vomiting. WOW, did she have the distance! It was also the first time hearing the words Child and SURGERY in the same sentence. PYLORIC STENOSIS I believe is what came out of the on call doctors mouth. The doctors told us that they needed to monitor Riley and do a scan of her inners. I will never forget when they took her from my arms, and told me they needed to start an IV. 5 minutes later, They came out from behind a door, and I busted into tears. Riley had her IV in her scalp. I cried, and cried for my sweet child. It was the saddest thing I had ever seen!!
Luckily, the test came back neg. and no surgery was needed.

Back then, I felt so fresh, so new, and everything made me cry.

Little did I know where this life would lead me.

In 2005, Carson and Cooper were born 9 weeks early. I struggled with the decisions that needed to be made, but I was no longer a NEW MOTHER, but and EXPERIENCED MOTHER and Matt was and EXPERIENCED FATHER.

From November 15, 2005 until Nov. 15th, 2006 we had become Children's hospital experts! Matt and I had been through - 39 days in the NICU, Cooper's hernia surgery, Carson's cranio surgery, and Cooper's cranio surgery (Never mind all the doctors appointments in between).

From 2006 - 2007,we endured Cooper's 7 day stay for rota virus, Carson's tear duct stint surgery, and Carson's ear tube surgery. Keeping up? Good because I am surely losing track.

And now, 2008, we've already had 1 (decompression) brain surgery, (1 sponge removal surgery ) with a possibility of a second.

In August, Carson and Cooper will have their 2 yr check up and CT for their Craniosynostosis. As of August of last year, both kids had very large holes yet in their skulls. If these holes do not close themselves, You got it baby.....we could be looking at a possibility of 2 more surgeries.

I am BURNT out! FRIED! I feel as someone has striped me of the emotions that I had the very first moment I saw Riley with the IV in her scalp!!! It is not fair for one family to have to go through the things that Matt and I have gone through.

Matt and I are not the same people we were in 2000. We're stiff, and at times, emotionless.
What ever happened to being free, free to discover our hopes and our dreams? This is not what I had hope for, nor is it what I had dreamed of.

It has made me, a stronger advocate for my children, and it has made me have a heart of steal, and it has made me a stronger person.
Through all that I have encountered, I have truly learned a lot. I want to help reach out to those who are first time parents, and their children are in the NICU. I want to reach out and help those parents who have just learned that their child has craniosynostosis, and I want to comfort those parents who are struggling with the ugly face of chiari malformation.

No parent should ever have to go through any of this, but if they do - I will be waiting with my arms wide open.

*For myself, Jill and Kelly, I would like to start a Fox valley area M.O.C.K group - Mother's of Chiari Kids. Let me know what you guys think and if you think you would be interested.


Jean said...

I think starting a support group is a GREAT idea. Its scary that I know the other two girls that also have children with Chiari. Its a very small world for such a rare disorder.

Anonymous said...

I think it is a terrific idea! The fact that you have all been through so much and STILL think of helping others in the same or similar situations when you still may have many more battles ahead truly reflects the wonderful person you are and I for one am very glad to have known you since 1979...we are getting old huh!

Michelle said...

You know, I think you're fabulous. I'm sorry you've been through all this - and probably more to come.

You're an awesome mom. Someday this will end, at my house & yours, and you & I need to go for a spa weekend!!!!!!