We visited Dr. Mervis in Louisville weekend before last. It wasn't a terribly positive visit. She said Louie is not typical of someone with Williams syndrome and that he is lower-functioning than most. This information makes us flash forward and the future is not usually a place you want to go when you have a child with special needs. Nothing has kept me more grounded in the present, which is a good thing so I hear. But still, after the meeting, the unknown seems a little more unknown, the dark a little darker, the reality a little bleaker. I try shaking it off and remembering that I will feel the same way about Louie when he's sixteen as I do now. Even if he's not talking. Even if he never says a word. I will still love him then as I do today.
I've been struggling with a lot of guilt lately. Guilt that my blog is almost entirely about Louie and special needs parenting. What about Ace? Because he is perfectly developing, a pure joy and the most contented little fellow around does that mean he doesn't deserve the same thought, the same encouragement and patience? Yes, he does! He deserves a million blogs over! But the fact is that Louie needs more attention and probably always will. I can't imagine what it must be like to have a sibling with special needs. I am certain it has potential to be a tough place.
I just read somewhere that a child with special needs never has to compete for his parents' attention. He just automatically gets it. It's true. Ace hasn't had near the amount of attention and encouragement Louie has. Even when Ace reaches a milestone, it somehow comes back around to Louie. I guess because I can see the way it's supposed to be. Everything people told me a baby would do, Ace does; a constant reminder that Louie didn't. But I do enjoy it. I really do, sometimes, guiltily, I enjoy it more than anything.
Last week Louie's therapist sent us some cell phone video footage of him walking. He won't walk for us at home but in that video he is cruising along like it's nothing! Looking around, giving high fives, struttin' down the hallway. That stinker.
Ace started crawling last week, a milestone slightly overshadowed by Louie's Shaking His Bon-Bon video. How many times did I hiss at Chris while he was on the phone talking to people calling about the walking video, "Hey, hey, Chris, tell them Ace is crawling.", "Pssst...tell them about Ace."? Sounds annoying, huh? I'm sure it was.
Beyond the special needs aspect of that scenario, there is another element at play; and that is a mother's never-ending pursuit of fairness, whether the child is typical, has special needs, twins, whatever, we want to be fair, equal, 50/50. Some moms can drive themselves a little nuts over this. Using Chris' mom as an example, "Now, I got Blake a pair of socks so to make it even I got you this shirt and then I got you another tool so then I had to get Blake this flashlight." You can only imagine how long it takes to open Christmas presents. A long time. A very, very long time, bless her equally-loving little heart.
Dr. Mervis commented that she could tell, based on Ace's personality, that he would choose to be a support for Louie, that he would want to be a part of Louie's life. Our pediatrician said that Ace would have the benefit of growing up with a certain sensitivity and compassion. But while these attributes are important, my greatest hope is that Louie and Ace develop a bond. Maybe not your typical brother bond, but something, some semblance of a connectedness only felt for each other. Right now Ace is Louie's shadow. He follows him around, sometimes just to touch him. It's sweet but I wish Louie would acknowledge him. Or even just look at him.
We've only had this diagnosis for a year and a half. I realize I am probably still grieving. I am not yet the veteran special needs parent that I know I will be someday. I know I will adjust and maybe even find something else to write about one day. But for now, my posts always seem to dig a little into the hurt of it all and then bounce back with some twist that spins it into a light that is more bearable, more humorous or more loving. I have to do that. Otherwise, I might lose myself in the why, why, why of it all.
5 comments:
It is a tough road. I can tell you that Ai being the youngest puts us in a different possition thatn you are. Her siblings will always view her as the baby and always have. They naturally want to take care of her because she is younger. I think having the WS child be the older child is just a different perspective all together. That being said, I am the younger sister of a special needs brother. I can tell you that there were times I was jealous but for the most part...I looked out for him, still do. I think as a sib of a special needs kid you are just more compassionate and more understanding of other people's differences too. Yes, my brother got more of the spotlight but I was totally fine with that...I'm kind of shy anyway. Ace will be okay, he will figure out his path and be an amazing person, look at his parents:) Brag all you want about either of your kids! I know that sometimes I feel like I shouldn't talk about my older kids as much as I do but then I find myself wanting to know more about everyone's kids, not just their WS kids. I think it is good to talk about what makes your family tick. In fact, I was just thinking about posting more about all of my kids....I'll have to do that tomorrow!!!
Noel
I understand where you are coming from. Sometimes I feel like my kids get the shaft because not only are they "typical" but they are older and very self sufficient. That said I will tell you that you will drive yourself nuts if you even try to keep things equal. I have 4 ages 22, 13, 7 and 2. I have given up even trying I figure when I am dead it will all have evened up somehow.:) I also believe that everything happens for a reason at that our WS children were not only given to us parents but also to there siblings to enrich there lives. Thinking of you guys.
Jenny, both Louie and aace are sweet little ones :) I just found your blog now, I had to say that i really enjoyed it! Don't worry about louie, no matter what dr. Mervis said, I am 100% sure that she doesn't know what Louie will be able to do in 1, 5 or 20 years!!!! She only knows the statistic... my son, Szabi was an early walker, just 14 months, the doc said that he is a high functioning ws, but still doesn't talk, and he is 3! I learned that it is not necessary to rely totally on docs.
Just hold on and have joy in your kids!!!
Hugs, Kati
Your post just reminded me exactly of how I feel with my family. Payton is the older child with ws....Koen, the younger brother. I feel like I don't praise and encourage him enough - but he just doens't seem to need it.....he's a typical baby doing his typical things :) He just makes it look too easy (and then I look back on Payton's life and get sad!). So, I understand where you are coming from.....and even after almost 3 years, still feel like I'm grieving. It's just a tough road!!
Hi Jenny, I just found your blog and I think you are a fabulous writer!
My Brady, who will be 3 in October, also is not walking or talking, although he is working on the walking all the time! He has very low tone, which is what has been determined why he is a lot more delayed than other WS kids his age.
We have seen Dr Mervis twice now and she has also said Brady is further behind other WS kids his age. Okay. I was a tad upset, then remembered there are kids who are worse, which cheered me up, then made me feel horrible. How can I be glad that a child is having a hard life? It is the fine line we walk on, as parents of special needs kids. We want others to do well, we just don;t want our kid to be left in the dust.
While I have enjoyed Dr Mervis' clincs, I have noticed Brady always tests better at home. I respect her opinion and will always seek it out, but I will remember that there is always more to Brady than the tests that "define" him.
On a sidenote, love your lasagna story!
Post a Comment