Discussion Forums
Mon, 05/10/2010 - 12:11
I don't think a week goes by that the question "Why not My child?" hits me. And I'm not sure it gets any easier to deal with.
Every time I see a friend or co-worker's young kids - younger than Katy - walking around, it hits me. Every time I see kids years younger than my daughter having full fledged conversations with their Mom's and Dads, it hits me. Every time I'm told that a particular therapy hasn't been show to work for a child with Katy's disability (and with only two in the world, how would it have been shown?), it hits me. Every time we go visit another one of Katy's doctors and we keep treating symptoms instead of finding actual causes, it hits me. And every time I see a dramatic breakthrough from one of our other exceptional children, it hits me.
But then it hits me from the opposite side: where would I be right now if not for Katy's situation? I wouldn't be writing this, for sure. I wouldn't be witnessing one of the most courageous little girls I've ever seen constantly trying to improve herself. It hits me that I would never have gotten the chance to see my family shine - and there is no other word for it - in the face of unbelieveable odds. I know our older kids love children; but I honestly don't believe a "normal" little sister would have had this effect on them.
And it hits me that I wouldn't be the man I am today - the man who has learned to be willing to take on almost any experience to help his family; the man who has learned to ask for help - even when the answer was almost assuredly "no," and the man who after years of telling himself he should write more, has finally found something he can write about.
This is my life now. Is it what I expected? Nope. Is it worth every moment? I may not understand it while it's going on, but yeah, it is, as I look back to where we came from not long ago.
And if I ask the question: "Who's the best person to teach me this?" Well, of everybody out in this whole wide world, why not my child?
Todd
hope4katy.com
After 21 years of living with Autism in our family, I've asked "Why not my child?" more times than I can count. As Todd (hope4katy.com) said, ever time another child meets a milestone I too wonder why not our little Dani. Even as my husband, Jimmy, and I turn 50 the questions don't cease. While other parents our age regain their freedom in this stage of life, we remain with home with a child whose development age will always be that of a five year old. It's difficult to get a babysitter who understands sign language and Dani's quirky needs, not to mention she's non-verbal and unable to tell us her likes, dislikes, or if someone is hurting her. As a result, we keep close reigns on her only to find our lives become more and more reclusive.
The challenges we faced early on in Dani's life were a whole different set than what we face today. We now understand this is the way it will always be. With this in mind our goal is to not make mistakes along this journey. Mistakes such as improper blame, unleashed anger, demanding answers, or looking at those who seem to have it all. Instead, we focus on protecting and nurturing our family, for without family and God as its center...we have nothing at all.
Blessings to our fellow parents of special needs children. May you never give up.
Nancy
http://www.oliveleafministries.com/
I too have said this many times. I have looked at other children with CP and thought "I wish Zach could have total control and use of just one of his limbs" I have thought "if he could just use one limb really well then it would be so much easier". But would it? Or if he had really good use of one limb would I think "I wish he could just have use of both arms or use of his legs?"
I have been so humbled through the opportunity to meet with other exceptional families, they have really made me take a step back and look at what we do have. When I see other families dealing with things that I can not even imagine or families whos kiddos seem to have more results than Zach I just think about how blessed I am. Zach can eat by mouth, he can drink from a straw, he can hold his head up (when he wants to), he can roll around on the floor and so much more.
I know it can be so hard to be ok with just small milestones but sometimes those small things mean more then others can imagine.
We all hope and pray for a miracle for our child but maybe just maybe the miracle really comes from us, not what our child can or can not do but what changes inside us as we watch them. I will never stop praying for Zach, that he will be the best he is able to be.
I have also come to a point that I know I am in a life long journey to be OK with what ever Zachs life (and ours) will look like because of his disability.
I had to grin when you mentioned Zach holding his head up (when he wants to). I was always helping Olivia balance and hold her head up when she could do it herself. One day when she was around Zack's age I was pushing her in her Kid Cart at the grocery store. I noticed she would put her head down more in the grocery store? I thought she was just getting more tired being out and about in the chair. So I kept putting her head up for her. I was spending a lot of time picking something from the shelf and she kept putting her head down more and I would keep putting it back up. I caught her off guard while she was putting her head down on her chest peeking out to the side with her eyes to see if I noticed... So "I " would put her head up... The little stinker was playing me like a violin... She laughed when I caught her...Your post reminded me of that day and made me laugh again. Moments I will cherish forever.
I have never said "Why not my Child", but "Why My Child". Everyone has a story. My child was born health and grew to be a very smart and active and lovable child. When he was 18 months old he fell in the pool. He was then diagnosed as CP. When he was in the hospital, he was at his lowest of lows. I asked myself a question, "Can you be happy if he never improves more than he was at that point?". My answer was yes, and if he did improve it was an extra gift. Well to say the least, he has improved. He has improved by leaps and bounds. He is not even half the child he was physically before the accident, So every improvement is a gift to me that's why I have never ask "Why Not my Child". However I know everyone has also asked the question "Why My Child?".
I completely get it. It's not that you don't want others to fail, it's just sometimes it seems like it's always someone elses kid that's making that break through or reaching that milestone. Just as we will look at typical kids and ask "why me", we also look at exceptional kids making huge gains and think "why not MY kid, when will it be our turn."
I think this is a great enviroment where we can express those struggles. We want to celebrate each others accomplishments but we also want to encourage each other too. Our journeys aren't always smiles and sunshine!!
Tara...I TOTALLY agree. It is so hard sometimes to keep the positive attitude up. I know there are days where I don't feel like smiling, giving positive feedback, etc. There are days where I question my sanity, how much more can I handle, am I ever going to have a "normal" life, etc. I am sure we all do...we are all normal human beings with emotions so why shouldn't we? I have had those same questions/situations with my "typical" kids too...just different questions and situations. There is not a parent out there that hasn't had the "why me or why my child?" thought-special needs or not. It's life. Our life is just different. We all have different struggles and challenges to deal with whether they are with our typical child or our special needs children. We have to learn to roll with the punches...as hard as it is sometimes. We all need to remember that no matter how difficult we think our road is...there is ALWAYS someone who has a much harder road to travel. So...today I am feeling positive about having a special needs child (probably because today has been a relatively easy day). Tomorrow may bring another challenge or struggle...but it may be with one of my typical children instead of Katy. I guess I will cross that bridge when it gets here.
I remember laying in bed at night trying to bargain with God for an immediate miracle. I' ll give up my legs for her to walk. What can I do to get this miracle she so desperately needs. It dawned on me as time went by that Olivia was given little miracles or milestones in time. I also began to feel the exhilaration of her small achievement or accomplishment and found solace there. I am so proud of her. Someone else may not recognize something so small in their own typical children. It's just expected. I also learned how others were so competitive with their children. Always comparing and contrasting. It's so much easier to accept the gifts you do have. Typical children present their own challenges which can be just as heartbreaking at times.
There are times when I feel like Olivia is an angel in comparison to other unruly children. One lesson we all need to learn in life is that we all have challenges. If we all threw our problems in a big pile, we more than likely would choose ours to take back.
I like that, Jim!! And I agree....I probably would choose my own pile!
As someone who has Cerebral Palsy there have been times in my life where I have asked Why me? why do I have to deal with my sight issues, my chair, my body not co-operajting yadda, yadda despite the fact that I don't know any differently.
There are indeed periods in my life where I have fallen into the self-pitty trap and wanted to end it all (most recent in August) because I just thought that the world would be a much better place without me and that this would mean that I would not be a burden to anyone. But I'm learning through plenty of love, reassurance, guidence and support that I am meant to live this life for a reason and that if that reason means my life being an open book for the world so be it.
My mind set is now not Why me? BUT I am here and I will shine and take on the world and continue to beat the odds!