At the risk of being one of those moms that annoyingly brags about her kids, I'm going to share a story about Sydney. Once in awhile I'm caught off guard, and really impressed, by her understanding of something...
While sitting at the dinner table tonight, some static came over the baby monitor on the shelf next to us.
Sydney: What was that?
Me: Just some static on the baby monitor.
Sydney: Maybe something is in Ryker's bed.
Me: No, nothing is in Ryker's bed, it was just some air. (I know this isn't entirely accurate, but it was the only way I could think of at the time to describe static to a two and a half year old.)
Sydney: Maybe it's gas in Ryker's bed.
Me: Gas? Is gas air?
Sydney: Yep.
At first I was slightly impressed that she understood the sounds from the baby monitor come from Ryker's bed, but then she started talking about gas. I have no idea how she knows that gas is air. Smarty pants.
**I know posts without pictures get kind of boring, so I asked Sydney if I could take her picture to add to this. She has a little canker sore in her mouth and told me, "Sydney's mouth hurts. Sydney can't smile, Mama." Sorry folks. (She always talks in the third person, hopefully it's just a phase!)**
Tuesday, February 26, 2013
Saturday, February 23, 2013
Typical Sydney
Me: Sydney, please don't jump on the couch.
Syd: I'm not jumping, Mama, I'm just bouncing a little.
The next day.
Me: Sydney, please don't jump or bounce on the couch.
Syd: I'm not jumping or bouncing, I'm just hopping a little.
She got me there...I give up.
Syd: I'm not jumping, Mama, I'm just bouncing a little.
The next day.
Me: Sydney, please don't jump or bounce on the couch.
Syd: I'm not jumping or bouncing, I'm just hopping a little.
She got me there...I give up.
Friday, February 22, 2013
Thursday, February 21, 2013
So very worth it.
There have been thoughts swirling around in my head for awhile that I wouldn't normally make room for on this blog, but I thought it might be cathartic for me, perhaps a little healing.
I've been living in the world of Down syndrome now for five years, and I have this notion that many parents, specifically moms, of kids with Down syndrome have this need to convince others that Down syndrome is the greatest thing on earth. It's so great that nobody else can understand how great it is, so we have to constantly be telling people about it's greatness. I've been one of these moms, but it bugs me. Because, guess what? Sometimes Down syndrome sucks.
When talking with other moms, we can sometimes empathize with one another and acknowledge that certain things are tough. But when facing the outside world it's somehow not okay to be vulnerable. I actually think there are some legitimate reasons that we do this, one being that the abortion rate in cases where there is a prenatal Down syndrome diagnosis is so high (reportedly 70-90%), and we can't imagine life without our precious ones, and don't want anyone else to miss out on life with a precious one like ours, so therefore we don't want to at any point risk influencing someone to choose termination should they be in that situation. We also expect everyone else to work hard on behalf of our kid, not harder than us, but hard. Teachers, therapists, doctors, relatives, friends; we need these people to be on our side, so in no way do we want to come off as complaining and give anyone else an excuse to lower the bar. Also, I hate pity. Hate it.
Of course there are great things about Down syndrome: lessons learned, opportunities given, relationships formed. But once in awhile I need to sit in the sucky parts.
I've been having a tough time with Myles lately. He's fiercely independent in certain areas and needs to be reigned in, which he hates, but when we try to get him to be independent in other areas he won't move an inch. His behavior can be challenging, communicating with him is frustrating, and there are so many times I just don't understand him. I've heard it said that you can love so hard it hurts, and that's how I feel with Myles. I love him as only a mom can love her precious baby boy, and want so badly to take away his challenges. I want to understand him, to calm him when he's anxious, have spoken conversations with him, extend him more grace, help others see him like we see him. I want to be his mom without feeling like I'm failing him.
Myles had a particularly hard time going to school the other morning. He generally likes school once he's in the classroom and settled, but getting him there is tough. He resists going in the classroom, rejects whichever teacher is there to help him, and wants us to go through the morning routine with him. But we don't. We say our goodbyes and leave, even if it means he's crumpled on the floor like he was the other day. So many emotions flood me in these circumstances. Mostly sadness, but also embarrassment, which then cycles into guilt...he doesn't want this to be happening either.
After leaving the school, I called Gilby to give him the morning drop off report and process everything I was feeling. A conversation that of course ended in tears for me as my sweet husband encouraged me with all of his positivity and depth of understanding I sometimes cannot get to amidst all my emotions. As I ended the call, my precocious two and a half year old chimes in from the back.
"Whatcha sad about, Mama?"
A question that makes me want to cry more. "I'm just a little sad because Myles had a hard time going to school today."
She processed what I had said and offered her thoughts. "I think Myles is probably being a good boy with his friends at school."
Even she understands what mama needs to hear.
And so it is. When I meet with new parents on this journey with Down syndrome I never, ever tell them it is easy. But I do always tell them it is worth it.
So very worth it.
I've been living in the world of Down syndrome now for five years, and I have this notion that many parents, specifically moms, of kids with Down syndrome have this need to convince others that Down syndrome is the greatest thing on earth. It's so great that nobody else can understand how great it is, so we have to constantly be telling people about it's greatness. I've been one of these moms, but it bugs me. Because, guess what? Sometimes Down syndrome sucks.
When talking with other moms, we can sometimes empathize with one another and acknowledge that certain things are tough. But when facing the outside world it's somehow not okay to be vulnerable. I actually think there are some legitimate reasons that we do this, one being that the abortion rate in cases where there is a prenatal Down syndrome diagnosis is so high (reportedly 70-90%), and we can't imagine life without our precious ones, and don't want anyone else to miss out on life with a precious one like ours, so therefore we don't want to at any point risk influencing someone to choose termination should they be in that situation. We also expect everyone else to work hard on behalf of our kid, not harder than us, but hard. Teachers, therapists, doctors, relatives, friends; we need these people to be on our side, so in no way do we want to come off as complaining and give anyone else an excuse to lower the bar. Also, I hate pity. Hate it.
Of course there are great things about Down syndrome: lessons learned, opportunities given, relationships formed. But once in awhile I need to sit in the sucky parts.
I've been having a tough time with Myles lately. He's fiercely independent in certain areas and needs to be reigned in, which he hates, but when we try to get him to be independent in other areas he won't move an inch. His behavior can be challenging, communicating with him is frustrating, and there are so many times I just don't understand him. I've heard it said that you can love so hard it hurts, and that's how I feel with Myles. I love him as only a mom can love her precious baby boy, and want so badly to take away his challenges. I want to understand him, to calm him when he's anxious, have spoken conversations with him, extend him more grace, help others see him like we see him. I want to be his mom without feeling like I'm failing him.
Myles had a particularly hard time going to school the other morning. He generally likes school once he's in the classroom and settled, but getting him there is tough. He resists going in the classroom, rejects whichever teacher is there to help him, and wants us to go through the morning routine with him. But we don't. We say our goodbyes and leave, even if it means he's crumpled on the floor like he was the other day. So many emotions flood me in these circumstances. Mostly sadness, but also embarrassment, which then cycles into guilt...he doesn't want this to be happening either.
After leaving the school, I called Gilby to give him the morning drop off report and process everything I was feeling. A conversation that of course ended in tears for me as my sweet husband encouraged me with all of his positivity and depth of understanding I sometimes cannot get to amidst all my emotions. As I ended the call, my precocious two and a half year old chimes in from the back.
"Whatcha sad about, Mama?"
A question that makes me want to cry more. "I'm just a little sad because Myles had a hard time going to school today."
She processed what I had said and offered her thoughts. "I think Myles is probably being a good boy with his friends at school."
Even she understands what mama needs to hear.
And so it is. When I meet with new parents on this journey with Down syndrome I never, ever tell them it is easy. But I do always tell them it is worth it.
So very worth it.
Friday, February 8, 2013
Happy Baby
Ryker, Ryke, Rykey, Ryke-Man, Baby Ryker. Three months, one week. Getting bigger and stronger, cooing, giggling, smiling, kick-kick-kicking his legs, grabbing toys, rolling from back to front over his left side, and still stealing our hearts. Growing up way too fast.
Wednesday, February 6, 2013
Young Athletes
This fall Gilby and the kids participated in a young athlete program through Special Olympics. It was a field test to help Special Olympics decide if they should use the program in other areas. Gilby went to a day long training and then he and the kids would do "workouts" three times a week at home. The activities were all predetermined and he had a guidebook to follow. They practiced things like bridges, backwards walking, standing on one leg, overhand and underhand tosses, jumping, etc. and had lots of obstacles to incorporate all of the skills. I have to give Gilby a lot of credit for sticking to the program so diligently. Myles was not the best participator at times, plus we moved and had a baby in the midst of it all...I would have given up. A couple weekends ago we went to a party in celebration of the participants. It was at a super nice fitness club and the kids had a lot of fun running around the gym with all sorts of equipment to play with. Hopefully we'll have lots more fun with Special Olympics in the years to come.
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