Christmas List

I belong to a group on BabyCenter, a support-group of sorts for parents of kids with Spina Bifida. It's mostly moms, with a few dads here and there. I found the group shortly after we received the SB diagnosis during the pregnancy. I usually pop on every two days or so and see the posts, learn new things, but mostly take comfort in knowing there is a whole world of other moms out there who are standing in the same exact shoes I am in at any given moment.

I only wish these moms lived in my town. I wish that instead of jumping online to give or receive a shoulder to lean on, I was driving with Emily to them...and we would drink coffee (or wine, depending on the time of day and the particular emotions that day!) and talk about how to get the medicaid waiver or how to appeal a denial or where to find the best urologist or new equipment or new therapy and comfort each other when a therapist says your child is 6, 8 months behind on speech, gross motor, fine motor. And then we would chat about and celebrate what all our kids are: beautiful, growing little people who overcome and persevere. And we would be so happy that the person right there could say, "I know just what you are going through!"

So I'll put that on my list...can't hurt to ask for it. I think, there are things we want that we don't ask for, or don't tell everyone we want. Like, my list had an ice cream maker, blu-ray DVD player, Origins Ginger Body Wash and Cream...but it had other things that I kept close to the vest, sharing with Chris, like the books My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities, and Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children. I always pictured myself as the parent who reads books on parenting, but books with titles like What to Expect: The Baby Years, or Potty Training The Easy Way. Ha!, I think now, out loud most of the time, of these books. All these books, the titles of which are now just laughable, these manuals on raising kids make complex issues out of everything. Meanwhile I'm trying to do the exact opposite: make easy the most complex of issues.

So after Christmas I'll be reading these new books (I have it in with Santa...he told me the books are on their way) and offering some reviews on them which I hope are helpful to everyone: parents of special needs kids; support people of parents with special needs kids; and people who want to understand the other side of the parenting coin, the side that mainstream media communication falls short of addressing and paying homage to.

For now, I'm going to *explain* to Emily, who should have been napping an hour ago, that PT will be here at 2:00, following immediately by Speech/Language Therapy at 3:00. Mostly she's just going to grin at me and say "Hi! Hi! Hi! Hi!" and we'll laugh about it all later during therapy meltdown...