Thursday, September 14, 2006

REALITY CHECK

This morning I checked our CHARGE listserv to review the latest information, questions, happenings. Usually I check this daily because it is a very active and helpful list, however I have been just too busy and perhaps I have been avoiding some "reality" about CHARGE.

Well that reality just hit hard...very hard.

The past few days I have been so amazed with Maxwell's progress (AMAZING) and incredibly proud of all that he is accomplishing. And he has been relatively healthy too...so it has been an "easy" week (for us). You start thinking, "wow...this isn't that bad, I can do this."

And then I went to our CHARGE site.

(Don't get me wrong fellow CHARGErs...I love this site and it has truly been my rock through this journey. I don't know what I would do without the support and information and advice from the other families.)

The first few random emails on the list that I opened quickly snapped me back into reality. The future is so frightening at times. So many of these children develop VERY serious behavior issues and that terrifies me. It actually scares me much, much more than the mental or medical issues, because often there is no cure.

One mom was referring to the very violent behavior of her grown CHARGEr (others are experiencing the very same), and another was asking for input on the overwhelming OCD issues her child is enduring. Another very common topic being addressed was toilet training (or lack thereof) in some of the grown CHARGErs...and the lack of friends because our children look and act so differently. And of course there is the barrage of emails discussing the lack of access to quality special needs education, lack of medical funding, lack of community support, lack of knowledge/research funding.

These are everyday struggles for CHARGE families.

In the world of special needs, this disorder quite frankly just doesn't seem "fair." Not only do our kiddos have to fight tooth and nail to survive the early years, but then they must endure a lifetime of developmental delays, overwhelming medical challenges (too many to list), sensory losses (hearing, vision, smell, taste, touch), and extreme behavior issues? This is just too, too, too much for one person.

I do my best to not think too far into the future, because quite honestly...I don't know how long Maxwell will be with us. It could be a day or another 90 years. And why worry about tomorrow when there is plenty to worry about today??? :) But every once in a while, the reality of his/our future scares the crap out of me.

I typically stay away from this topic on our blog. I don't want to scare or overwhelm my family and friends, but sometimes I think it is important for all of us to have a reality check. Look at what our special children have to endure...look at how much harder they have to work to accomplish the simplest of tasks. And we as parents? Yikes. We get over one hurdle just to look ahead at another. As I write this, I find myself trying to catch my breath...it is simply overwhelming.

With tears in my eyes, I ask for a special prayer today for Mighty Max and all of his friends. Please pray for peace, understanding, strength, comfort, joy and love for all of our CHARGE families. Ask the Lord to help us understand why this happens to such amazing children. Ask the Lord to please grant us the wisdom and strength to know how to handle the many decisions and struggles of everyday CHARGE life. Most importantly, ask the Lord to keep his loving arms around us so that we never give up the faith and remain steadfast in our love for him and the dedication to our children.

4 comments:

Linda said...

Amy,
Everything you said is so true! It IS very hard and very frightening. But with the Lord's help, nothing is impossible. Know that He won't give you more than you can handle. (He comes close somethimes, but trust in Him, He knows what He is doing. Continue to keep Him as a partner in caring and raising Max. He will indeed, help you. As a mom of an older CHARGEr, I promise you, it will be worth every challenge, fight, heartache, and all the tears you will shed. MAX himself, will make it all worth while. Easy, no, but nothing worthwhile in life is.
Prayers, blessings and hugs to you and Mighty Max.
Smiles from Linda - Jeff's Mom (22 yr. old CHARGEr)

RebeccaA said...

Amy,
You echo the concerns I had about Cameron when he was so little and I was reading the posts from families with older children with CHARGE.

I still have struggles every day. But Linda is so right on, having faith in God's plan for you and for Max can ease the pain and frustration.

When I am in the middle of a very trying time with Cameron I say a simple pray - "Lord, please help me, you gave me this child, now what do I do?" And He does give me comfort. Perhaps not like I want, but He does give me relief. Maybe it's a stranger telling me how calm I seem, or an email from a friend.

God is always with us. Lately with Cameron's efforts to potty train and my frustration with it a thought popped into my head, "Cameron will still go heaven even if he's in pull ups!"

My love to you and to Max,
Rebecca
Cameron and Nathan's mom

elle said...

wow i know it can get very overhelming in there some posts ill look at and say thats me ther eliek that one tim did bout the behaviour phono type im like heres me but then you should did you see the mum one thats you amy :) and soemtimes the way people talk i think wow that me to i have trouble coz i was in hosp so longof course im imature im not the only ome coz soemtimes ther r times when i think i hate this but then i think k im not the only one here LOL love you xxxxxx just do one thing for me squish him tight lol

Cedie L Mock said...

I am righ there with you Amy. Let us both try to live in the good of today with our special children and worry about the bad another day
:-)

Give Max a big hug from Cedie and me!