Sunday, November 7, 2010

Raising Support

Exactly one week from today, my family and I will participate in the annual Buddy Walk, which is a fundraiser for the National Down Syndrome Society (NDSS). The NDSS helps to educate, advocate and develop support for individuals with Down syndrome.  Next Sunday, November 14th, thousands of people will meet at Santa Anita Park to help raise money and do a walk for this worthy cause.  If one year ago, you would have told me that I would be participating in this event because I have a child with Down syndrome, I would have thought that you were crazy.  When we got Elijah's diagnosis, I went through all of the stages of grief about it.  Some of that grief dealing, was in starting this blog.  I also got educated about what we might be dealing with, and because I got too overwhelmed by the medical and mental disability research, I quickly began reaching out to actual families with real-life experience.  I'm coming up on one year of knowledge about Elijah's Down syndrome. Most of the time, I feel pretty balanced about it.  But there are definitely still times that I feel a little overwhelmed.  I mostly feel overwhelmed when I'm around the Down syndrome community. This is part of me now. I am part of this community.  Turns out it's a pretty cool community, but the reality is no one really wants to be part of it.  I mean, not really.  Once you are, you realize how cool some of the people are, you realize that you have people who will "get you" on a deeper level than you ever thought possible, and you realize that these people will embrace and support you even when they barely know you.  So, while I know there will be some cool moments at this Buddy Walk, there is also a part of me still grappling with the knowledge that I belong there.  I'll admit it: About 50% of the time, I meet a child with Down syndrome and think, Ok. That's awesome. I can handle a child like that. That child is smart and adorable and wonderful. And then about 50% of the time, I meet a child with Down syndrome and think, Oh God. Are you sure I'm cut out for this? Is that really what it might be like?  It's not unlike a single woman who 50% of the time looks at her friends' kids and thinks, Oh I can't wait to have children! and then sees a meltdown or experiences constant whining and thinks, Am I really cut out for children? 

On November 14th, I'll be confronted with most of these feelings, when I join the thousands of other people (many with Down syndrome) for the Buddy Walk.  I'm just a little terrified.  To add to my inner turmoil about the whole thing, I sent out a handful of emails to some local friends asking for their support and to come and join me on the walk, and have not been getting many responses.  It's so hard for me to actually ask for support and be vulnerable about it and then not get some kind of response.  It sucks, actually. I'll make a little addendum here, because I know that my friends have super crazy, busy lives and it's not always possible to respond right away. I'm sure that everyone will eventually respond and it will all make sense, but meanwhile I'm kinda bummed out. 

If anyone reading is interested in joining us on the walk or is willing to make a donation, you can visit Elijah's Buddy Walk website page: or email me for more info on registering.

On another note, we FINALLY had an Occupational Evaluation for Elijah last Wednesday!  I immediately liked the therapist.  She was incredibly knowledgeable, kind, and she complimented my home decor, clearly she is a brilliant, likable woman... :)  Elijah had just taken a nap, had a full belly and I thought it would be a great hour for the therapist to assess him.  Elijah had different plans. He was pissed through the whole thing.  I don't actually think it was because of the assessment. He seemed to be acting like he had bad gas, but regardless of the reason, he screamed bloody murder through most of that hour. Joy, joy!  Toward the end of the appointment, I showed the therapist one of the "moves" that Elijah loves: He lays on his back while I hold his hands. Then I assist him to a sitting position and then he pushes off with his feet to be assisted into a standing position.  He LOVES this. He laughs and smiles, and is obviously pleased with himself. The therapist says, "Ummm...I wouldn't do that with him anymore.  It's good that he likes it so much, but....You should really wait to see the Physical Therapist, so don't do that anymore until you do."  I looked at her and said, "SEE??!! This is why I have been asking to see a professional. I don't know what the hell I am doing." (Yes, I said "hell" in my son's first OT evaluation.)   I. don't. know. what. I'm. doing. You can say, Well you never know what you're doing when raising any child, and I would agree.  Except, there are millions of books written to help to raise a typically abled child.  It might take awhile to find the literature that suits you and your child best, but there is a lot to choose from.  The population with Down syndrome is comparatively tiny.  There is also such a huge range in how each individual is affected, that you can't even get a real comparison there either.   I don't know what I'm doing, but I'm doing my best. Sometimes my best feels sadly lacking, but I do know it's all I can do. 

Oh yeah, and I had to have the babysitter give Elijah some formula (I have been exclusively breast feeding) because I am completely out of my reserve of frozen breast milk. Apparently, he was pissed.  I think he was thinking, WTF?? I did not sign up for this nonsense.  She managed to get him to take a manageable amount, but we'll see how things go.  I may be up pumping at 3am every night... 

That's the update. We're doing the Buddy Walk. My friends are MIA. Elijah cried through therapy, and he is pissed when offered formula.  However, I laughed til I cried this morning, when Christian came into the room while I was feeding Elijah. He said, "Look Mom, I have a penis." (He was clearly holding something, but my view from the bed was blocked.) I peeked over to see him holding a baby carrot, sticking straight out, right where his penis is.  I could not stop laughing.  I said, "You sure do.  You're  a funny, funny guy."  I had the thought that I probably shouldn't be laughing so hard, because I don't want to turn it into a "thing", but when he said, "I'm eating my penis now, Mom...," I lost it and the laughter produced tears.  It's been a long time since I've found penis humor to be funny, but coming from a 3 year old, it's pretty hilarious!


Bonnie@TheFragileXFiles said...

I have thought that exact same thing when I see older kids and adults with Fragile X Syndrome.....oh gosh, I am not going to be able to handle this. I just try not to focus on the future too much. The here-and-now is enough for me! Excellent blog, very true, very real, very honest.

Lochhead Family said...

I came across your comment on a friend's blog (The Bates Motel) and I don't know why I was drawn to click through to your blog. But, I'm glad I did. Because our lives have a lot of similarities ... 2 little boys (one big boy), the youngest of whom came with a prenatal diagnosis of Down syndrome. I read a few of your entries and I love how honest you are. I don't think any of us know what the hell we are doing... but you are right that it takes on a whole new meaning when you have an added diagnosis. But the best we can do is follow our instincts and I think that finds us down the right path most of the time. Hope you check out my blog sometime (I don't post near as often as I'd like to!) and you can see a glimpse of your future in a couple of years. I love that my oldest accepts and supports his brother unconditionally without regard for what he can and can't do compared to other kids his age. My dream is that the rest of the world will learn to be so accepting. Take care.

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