For a long time now I've been wanting to post a link to one of my favorite resources. The book is Changed By A Child: Companion notes for parents of a child with a disability. If you know someone who has recently received a diagnosis, I would encourage you to send this book to them....it has been a tremendous gift to me. I regularly come across an entry that I want to send to everyone I know and say, "THIS is exactly how I feel." "This is EXACTLY how my life is"...This book has been so validating during the ups and downs of the journey over the past 4 1/2 years.
Case in point: After a particularly exhausting week of Matt being gone and feeling the weight of a new diagnosis for Elizabeth, I read this entry on page 278:
Vinetta sighed. Life was so complicated now. She had never reckoned on life being complicated. It was like knitting on a dozen different needles. ~Sylvia Waugh
Life withour kids is complicated. The disability itself is complicated. Our emotional responses are intense and contradictory. The medical issues are complex; the technology our children use is intricate. Filling out a medical assistance form is tricky, as is figuring out the special education system. Hunting for resources can be an experience in maze walking.
Then there are the multiple filters we have to run everything through. Our kid leaves for school happy and comes home irritable and belligerent. Is it physical: Is she constipated? Are her new shoes to tight? Or is it medical: Did we forget the medication today? Is she getting an ear infection? Or is it environmental: Did the teacher assign new seats? Is it frustration? Is she tired of not being understood when she speaks? Or is it just a mood, just being a kid.
Then of course there is all the rest of life--our other kids, our relationships, our job, what to have for supper, how to kill the crabgrass, when/if to take our vacation. We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."