Today we attended our first official event in the world of Down syndrome. We attended our local Buddy Walk.
This morning, I wasn't sure if we would wind up going. Unfortunately, we have a bit of a sickly household at the moment. Cassidy, Dave and now Dylan are all sick. Aw, poor ol' Dylan. He just couldn't quite escape the germs which have been flying rampant around the house.
We decided to give it a shot anyway. So, as we were driving there, I was feeling both excited and nervous. I was genuinely excited to see other children with Down syndrome. I mean...really see them. Before I had Dylan, of course I had seen people with Down syndrome, but I had never really given it much thought. Now, it is my life, our life. And I'm pretty sure that these days I give it more than enough thought!! I was nervous because I guess this was our way of admitting that our son has Down syndrome. Yes, I know we've known this for 3 months, but this was my and Dave's way of....accepting it maybe? Our way of putting ourselves out there, for everyone to see. I was nervous to see other children who may be low functioning. I am a bit ashamed to say that, but unfortunately it's the truth. I was scared of what I may see. Because right now, Dylan is a baby and is just like any other baby. It is not easy for me to picture Dylan, say, as a 10 year old or 20 year old with Down syndrome. Well, we did indeed see children who were low functioning and nope, it wasn't easy. It is not easy to admit that this could be our son. We also saw children with Down syndrome who appeared to be high functioning. Hey, this could also be our child. See, we just don't know. And we won't know for a while. Only time will tell, I suppose. At least that's what I've been told.
While sitting on our couch tonight, I turned to Dave and asked him how he felt about today. He said he felt emotional. Emotional in what way, I asked. He said that he was just blown away by the fact that everyone there was just there...just there loving their kids. Loving their kids no matter what. High funtioning, low functioning. Walking, not walking. Talking, not talking. Their parents love them.
And I know for a fact that is how we will be with Dylan as well.
What I was afraid of, though, is ok, I think. It's ok to be afraid of what you do not know, especially when it involves the future of your child. But the future is always uncertain, isn't it? What I am finding comfort in, is that he is Dylan, and that is all I need to know right now. He is the baby who loves to be held and hugged. He is the baby that smiles and talks and looks you right in the eye as if to say, yes, don't worry, I know. I love you, too.
11 comments:
O.K. here goes. Today was a very emotional but "uplifting" day. Oh BTW I'm L's husband and I have never left a comment, so please be patient with me? We arrived at the "Buddy Walk" and we were both curious/nervous/happy about the day that followed. After arriving, we had to check in and register. As I was standing in line, a woman and her daughter with Down Syndrome were in front of me. All of a sudden her daughter came to me and wrapped her arms around me and it stayed that way until we got to the checkout. My eyes filled with tears thinking about our new son. I asked what her name was, and all she wanted to do was hug me, and her mom was just sooo cool about it! Anyway, I guess what I may be trying to say is that it kind of put us in that world (which I never expected) but I was in acceptance?
Gosh, Laurie (and Dave) . . . I can't even think of anything coherent to say. It is so comforting to me to be going through this journey stage-by-stage with you Laurie. You often express so many of the same things I'm feeling.
Thank you so much for sharing about your day today.
I think Dylan is very lucky to have such WONDERFUL parents, the two of you are doing an amazing job!!!. What David said regarding how he felt about today, is exactly what both of you have been doing since Dylan was born, loving your son no matter what!!!.
You are right Laurie, all you need to know right now is that Dylan is Dylan, the baby who loves to be loved and who loves you too. Tomorrow Dylan is going to be Dylan, today or tomorrow Dylan will always be like Dylan and what’s really important is that he will always be loved. Wishing prompt recovery to Dylan, Cassidy and David.
L and D what a great emotional day! The unknown is scary no matter what. It scares me and everyone to not know what to expect day to day. But you guys are right, Dylan is Dylan and will always be you amazing son. I think taday was a great breakthrough on your emotional journey. Dave you should comment more often, you are such a great Dad! I love you guys, feel better Dave, Cass and Dylan
Oh Laurie, I'm jealous that you got to do the Buddy Walk. I just posted on my blog about why we couldn't do it. I'm glad it was a good experience for you. Here's hoping your family gets well soon!!
I can totally relate. I'd be lying if I said I am not STILL scoping out the situation (as it were) now when I go to anything DS-related. You know what I sometimes think though? I sometimes look at members of the typical population and think "Huh. At least she won't be like him!" There are "high" and "low" functioning members of every PART of society! :)
That sounds like a wonderful, and educational, day!
Someone once told me, "It is better to love the child you have now than to worry about the adult he may become." And, you are right - the future is uncertain for ANY child!
You are obviously such good, loving, and attentive parents. That is ultimately what is going to make the difference for Dylan! Don't worry or stress over missing one or two (or more!) therapy appointments - that is not what is going to make the difference between high and low functioning. Please don't stress yourself out over missing some "tummy time," or slacking off on therapy sometimes. I know that you are trying to be the best mommy you can be, but you ARE! You do such a good job with him. He's going to do everything . . . just in his own time.
You are going to be amazed by how well he will do after his surgery. Right now, all of his energy is going to just keep that little heart working. But, after his surgery, you will see changes and progress DAILY. You will have a challenge keeping up with him! But, for now, just concentrate on keeping everyone healthy, gear up for surgery, and look forward to the day you will say, "Remember when he was so sick? Remember when we had to watch every germ? Wow, life is better now!"
You are in our thoughts and prayers to keep everyone healthy as you get ready for surgery. Thanks for keeping us posted.
Amy
Great post. And you're doing the right thing, the only thing you can do...taking comfort in who Dylan is today. Just keep doing that, and everything will be all right.
Our first buddy walk was last year when our daughter was 3 months old and it was HARD! I totally get the range of emotion involved in that. I was wanting to meet other parents but so NOT wanting to be there involved in an event of this sort of a cause that I was now a part of (if that makes sense). I was really dreading seeing adults, especially lower functioning and overweight adults (I know that sounds terrible!). I cried a lot that day but I did meet some awesome families and adorable kids.
This year our buddy walk was an entirely different experience. I really saw happy families and didn't focus to much on the abilities of the kids (well, OK, I did a little bit). I was OK with being there. I hope next years walk is better for you as well!
Laurie - It was SO GREAT to meet you at the Buddy Walk. You have a beautiful family!! I know the first experience of being around alot of kids with Down syndrome can be very emotional - but I think what was confirmed from being there was so important - that you're going to love Dylan and be proud of him every day of his life!
Hope to see you again soon!
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