"Life shrinks or expands in proportion to one's courage." ~Anais Nin
I'm sure most of you have read the poem "Welcome to Holland." It was first brought to my attention on a website for blind babies, back when all we thought Kendall had was cataracts...and I thought it was the end of the world Kendall could be visually impaired. (hmh!) Well anyway, the poem is a glimpse into raising a child with special needs. How you end up in Holland when you were prepared to go to Italy and enjoy all the things Italy has to offer. You discover that Holland isn't a bad place...just different. You meet different people, yadda yadda. Well, in all honesty, I'm pretty pissed I didn't get to go to Italy. I get it. Holland is a different experience and it can be as enjoyable as you make it. I'm willing to give that a shot, of course, but I would be kidding myself and everyone around me if I acted like I was over the resentment of the detour to Holland. When will that feeling go away? Will it ever go away? Will I ever be able to see a little girl at the soccer fields,church, gym, grocery store, mall, etc. without thinking to myself...geeze, I bet they're enjoying Italy? I've come a long way in the last 5 months, but I have an even longer way to go. Seizures don't help the process either!
Well, today I am going to try again to take my first step towards forgetting about Italy. I am going to unsubscribe to the Baby Center (this week, your 9 month old should be...) e-mails. Hopfully that will enable me to live in the now. We'll see!
Kendall is officially off of the Klonnopin. She has an increased dose of Topamax again tonight. I wish I could say that it is helping, but the seizures seem to be coming more and more today without it. We have a busy week with therapy and our 24 hour EEG on Thursday. Keep us in your prayers.
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4 comments:
I love all the new pics and I love you guys!!
Not sure if it every really goes away. But boy do I know how you feel! Hope everything goes well next week. By the way...I went to Baylor too! I graduated in 99.
I just found your blog through the PSN. My son had a stroke in-utero also.
First of all, wow is Kendall a beautiful little girl! You have some great pictures of her on the blog. I love the little rosy cheeks!
My son is now 21 months old and I have read this poem. I have found for me that it is a day-by-day thing. Most days I am able to looks at my beautiful son and not think about the stroke or how he is relative to other children his age. Occasionally I still do have one of those "not fair" moments. When I start to think about the 5+ appointment weeks and the struggles I watch him have. It really helped me to connect into a network of Mom's who had kids with a similar impact from the stroke. I did stop reading anything that said "Your XX old child should...." because he is going to do it when he is ready, not when Baby Center says he should!
I also saw your note about the PT turning into a counseling session for you and had to smile. I have had that also and that is when you know you have a good PT :)
You will be in my thoughts and prayers.
I don't think it ever goes away. I pray it dims as she gets older. You are an inspiration. Stay strong.
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