Sunday, June 22, 2008

My little angel..


My little angel..
Originally uploaded by Lalabaloobah
You know, I don't know if you know this or not, but my little angel has Hydrocephalus. Do you know what it is? Well, we had the wonderful opportunity to be part of the Hydrocephalus Association Conference in Park City, Utah. It was completely moving. Emotionally exhausting and powerful to say the least. There were so many parents that have children with Hydro, individuals both young and old, and also just advocates that care for this population. I am amazed how beautiful every individual with Hydro is...as if they are angels walking on this earth. Some well, it's obvious that they have Hydro. Others, like my little guy, not so obvious. But as I continued to inform myself about the latest in Hydrocephalus, I began to realize that my life has been in a bit of flux because of him and his Hydro. I haven't settled in my emotions as a concerned parent. I haven't let myself feel the pain of knowing that my little guy will grow with this condition for the rest of his life. I haven't come to terms with the fact that there is always a risk of shunt failure and infection. So, this weekend was the opportunity for all of it, literally, all of it, to hit me. He may not have obvious signs of having Hydrocephalus, but as we inch closer and closer to entering the public school system, I am reminded that there may be cognitive issues and concerns. In matter of fact, we found out that Hydro kids are children easy to get upset and overly emotional/frustrated about the little things in life. And yes, he does..most certainly he becomes that little guy that we can't console. We found out that yes, it may take time for him to process certain information like cleaning his room. For instance, telling him over and over to pick things up...sounding like a broken record and getting anxious, stressed, and frustrated about his lack of responsibility, etc. Well, it all makes sense...it's my child's Hydrocephalus. He's not ignoring us, he's trying to process information. And it takes a while, most definately. We found out that there is a strong possibility in regards to how he isolates himself...this happens during school and at home and its a part of the Hydrocephalus. His isolation of himself is again, a processing issue. He may have difficulty sticking with a group of kiddos who are not only his age, but kiddos who are running around and doing all those kiddo things at such a fast, kiddo pace. He has to slow down, to catch his breath, more like catch up his mind and body with what is happening. Again, it's the Hydrocephalus. So as I take all this in, I breathe a bit deeper and take a moment to be thankful for all that he is. Hopefully, you'll remind me too. My little angel is more than you know, in matter of fact, he's more than what I know. He will grow and become the child, teen, and adult with Hydrocephalus. He isn't Hydrocephalus, but simply a wonderful bright star in my daily life. I would have it no other way. Come visit some more photos here....

3 comments:

said...

Dear friend, i am sure Solan will be fine, with such a loveing mother to care for him through whatever difficulties he may have.
Love u!

Laura said...

Your post made me cry because what you wrote about Solan also rings true for Cara. It took me a long time to come to grips with what having hydrocephalus would mean in Cara's life. She is Cara, bottom line...just like Solan is Solan, regardless. We just know to cherish our children so much, don't we?

I hope that we can get together soon. I'm anxious to hear all about the conference!

bluelady said...

Hello to a wonderful mother ..with and equally beautiful child..
Yes I too have hydrocephalus and Although I am a bit older than your child (at 38) I too hate to be told to hurry up ...I have also noticed that some times things that normal people do may take a little longer for me to process in order for me to do the same thing...So I just avoid people who I know will make me rush ...
Life is short enough with out having to be rushed ...

No-one knows how long we have on this earth so no one has the right to say hurry up to anyone ...
Things will get done in your time not anyone elses ...
Good luck Solan
May you have a blessed life filled with surprise and anticipation ...

hugs
Kathy
australia