Friday, December 31, 2004

What is means to me ...

"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see it is what you would have wanted had you known." - Garrison Keillor

This quote has meant a lot to me this year. Earlier in the year when I found it on the internet (attached to a friend's signature at my Special Needs Support Group message board), I printed it out in big, bold letters and posted it to the door of my office, where I was sure to see it each day. I started our year end Holiday Letter this year with this quote, but failed to really expand on what it truly means to me.

I certainly don't feel fortunate or lucky to have a handicapped child like Jenelle. At times it is a burden that I think few truly understand. On one hand, the worry, the medications, the therapy get to be too much. There are time I wish she would just hold her bottle on her own, or sit up... even just chew food! Every day is a battle - a fight against seizures, a hope for improvement, for a small smile or laugh. This is certainly not a life anyone would choose on their own.

However, when you look at the bigger picture, how her life has changed mine and those around her, I do feel lucky. Every parent wants their child to be the best, to do things they never did, and to enjoy life to the fullest. How many can honestly say their child makes them a better person? Not because their child is successful, bright, or wealthy. My child makes me a better person because I now have more patience, I now accept and see disabilities differently, and because of her I've had the opportunity to meet other parents who are just as strong as myself and even stronger. Jenelle makes me a better Mom, and a better human being.

"it is what you would have wanted had you known"... Had I known my child would have faced such difficulties in this world at such a young age, I'm not sure I would have chosen to keep her. Thinking of having more children spreads fear in my body - a fear of re-living the hurt and disappointment of mourning the loss of the "perfect" child. But knowing what I know now... of course having a handicapped child is what I would have wanted. Who wouldn't want a child that made you stronger, made your a better human, and made you love more than you ever thought possible? Isn't that what every parent wants? I think that is what I have, even though getting there was bittersweet.

Best wishes to you all in the coming New Year! Let's hope you are lucky enough to realize that what you have is what you would have wanted anyway.

1 comment:

winifred said...

hi, kelly was going thru to find any information about uncontroled siezurs when i found this site , jenelle is as beautiful as my daugther also diagnosed wit infantile spasm at 4months was a normal baby till then. she is 17months and can barely hold her neck, been to various hospitals too, had various antilepiptiss, Acth, currently on vigabatrin, all we see are various seizures, dn know wat to expect am really distraught she also has a brother been a long year, have the fear also of another child, but i strongly believe, whatever, made me stronger , all ou test results are normal too , MRIS are good, unlike you, your country provides soo much help for cases like this here in Nigeria we don't even have a doctor to manage her we travel to the UK, India and others to seek help, but somehow we trust and hope in God all would be Good , Jennele is a beautiful Girl and all would b e well. i Trust. am goig through the same, i wish u all the best and more strength and Gods love to see you through.
Winifred.
enadayila@yahoo.com