Wednesday, September 21, 2011

Hug a little tighter and more often, say I love you's unceasingly....

The other day I got a CaringBridge notification for Christopher. A young man I had recently found through another NF moms post on Facebook. He was not doing well. I went to his page and read his story, journal updates, sent a card in answer to a request from his mom and posted comments. (maybe it is just me but I love and find comfort in comments people leave me)

Christopher was Cindy's only child and son. My heart clenched when I read that. Kyle also my only child and a son I felt an immediate connection with Cindy. Every time I got a notification over the last month I feared the worse for sweet Cindy and the rest of Christopher's family.

That final notice came a few days ago. Sunday the 18th, sweet Christopher passed away. His mother writes such lovely updates. You can read his story Christopher was diagnosed with a brain tumor due to a complication of NF about 3 1/2 years ago. And fought a courageous battle since.

As I read this Monday I cried, sobbed, tried not to think of all the what if's our own uncertain future brings. Monday I hugged Kyle and kissed him every moment I could all the while trying to hide the tears forming in my eyes. I caught myself fussing at Kyle Monday night and felt so guilty. Thinking Cindy would love one more chance to "fuss" at Christopher, to then immediately hold him tight.

This is the 3rd person in the 2 1/2 years since Kyle's diagnoses that I have "met" someone in the online NF community to pass from NF. They have ALL been to young! Ages ranging 14-23, to soon. I think, at least for me when I hear of someone in the NF community passing away my heart seizes up at the fear that grips me. And then I get fighting mad! ha ha I push forward, raising awareness, offering support where and when I can. And then I hold Kyle a little longer, a little tighter. Wishing with all my heart I could bottle up these moments so that I never forget. Wishing I could somehow hang on to the feeling of him in my arms, his little arms around my neck hugging me tight. Saying "Mom, you are my biggest friend".

I cant believe Kyle is already 4 1/2. Where has the time gone? As I tried to cuddle/rock him like I did when he was a baby I told him to stop growing up. He looked at me puzzled and asked why. I told him cause I missed my baby Kyle. He patted my shoulder and said its ok mom! Oh to have the quick reassurance that he has.

It has been said before, time is precious, or you don't know what you have until it is gone. That is so true and on one hand I hate that those of us in the NF community are reminded often that we cant take anything for granted. And on the other hand how great is it to be reminded so often that we hug our little ones so often and comfort others in need.

This week I have been pondering on this a lot. I can not change the future with fruitless worry. I can not control how long Kyle is here on this earth only God can. All I can do is treasure every moment like it is more precious than gold because it is, all I can do is fight the hardest I ever have for him, all I can do is love him, plan for a long and healthy life and take comfort in knowing he is mine fore eternity.

Kyle mom loves you more than you will ever know. I think I love you more than even I will ever know. Some days my heart is so full of love and pride (you know the good kind) that I feel it will burst. I am so happy and filled with joy it is dizzying and I have to catch my breath. You bring nothing but joy where ever you go, whatever you do and to whom ever you come in contact with. I cant imagine life without you and feel so blessed that I get to call you son.

Tuesday, September 13, 2011

Sneaky NF

You sneak in here
You sneak in there
Why NF do you sneak in everywhere

I have talked before about being a mom with a child who has special needs. We get the priviliedg of worry even more over our precious children.

One thing that has been on my mind lately (after a discussion with Kyle's teacher) is that with NF many times it is not obvious to others that anything is out of the ordinary. I should say depending on how NF effects you that is. We have all certainly heard the stories about the visible tumors that make it hard to be mobile, the ones you cant cover up and the ones that others can still under the clothes due to their size. But when NF effects you internally others do not know. After we stopped chemo I kind of felt like some "forgot" Kyle had a brain tumor. Since he had no outward signs they felt life should be smooth sailing.

But I know he still has a brain tumor, I know he is still blind in one eye. I can see the struggle he has going up and down stairs. I know it isnt age appropriate for him to turn and crawl down stairs. But others do not know that my boy cant see out of one eye. They see his cute glasses and call him the Jerry Maquire kid. (yeah we get that a lot! ha ha)

In the beginning of 2011 I started noticing some little things that were becoming more difficult for Kyle. Nothing kept him down that is for sure and he figured out a way around things. And most people wouldnt have even noticed. But I did, I am his mom, I know. I asked his Oncology team in the spring if they thought we needed to get him evaluated. I wasnt sure if all 4 year olds are still unstable on their feet and having problems with depth perception. We had him evaluated by the Arizona Foundation For The Blind when he was 2 and we started chemo. At that time he amazed everyone and they couldnt believe he was blind in one eye. So since his team in the Spring said just keep an eye on it I figured it must be normal.

The Kyle started school in August. As fate would have it he was assigned to the classroom with stairs and not the one with a ramp. Almost immediately I noticed the difficulty he was having going up and down and then it was cemented when I saw the other kids running up and down then, no holding on now crawling or hesitation. I know it was time to get him evaluated.

I first emailed my good friend Diane S. who has worked for years as an Certified Occupational Therapist Assistant. She is someone I look up to, admire, value and respect her opinion. I hoped she would give me some things to do at home and that he should be fine. But she encouraged me to do what I knew I really needed to do. Contact the school district and get him evaluated. So I spoke with his teacher and got the number to call. She didnt know he was blind in one eye. Pretty sure I wrote that in all the registration forms. But it was nice that she didnt know anything was wrong. (again with no one being able to tell something was different)

So I called the number she gave me and I dont know who I thought would answer but it kind of took me back when they answered Special Education Department. It is weird because I know by definiation I have a son with special needs but Kyle acts so normally that even I sometimes briefly forget he would be considered special needs. So we made an appointment for October, he is also up for another MRI in October.

So I anxiously wait for the evaluation, eye exam, MRI and meeting with the Oncologist/Geneticist all in one month. Its going to be a busy month!! ha ha

I am still putting off trying to learn Braille. I still feel I need to do it. But man oh man it seems so overwhelming. Such a monumental task. I started reading up on it a little a few months ago. I know I just need to dive in feet first, just the way Kyle would do it!! That boy has a love of learning, a love of life that is catching.