As the months roll on, it is becoming more apparent that William has some serious issues with his motor function. We knew this would be the case, but, still, it is very hard to watch your child fall farther behind his peers. Much harder than I thought it would be.
It is hard to see other typical babies around town. Sometimes it even hurts to look at Margaret and think that William will probably never be able to do the things that she does.I have taken the habit of telling the Pediatrician's staff not to ask any developmental questions about William when I bring him for his well baby visits. So I get to avoid having what he is NOT doing shoved in my face.
Yesterday was unavoidable, though. It was time for William's six month review with EI. The questions were terrible even though they were asking them based on his adjusted age of 6 months. I hate saying "no". I did get to say "yes" on some things related to speech and a few "sometimes" answers for a few fine motor things. Overall, though, he is behind. I don't know why, even though I expected it, it is so hard. I've been pretty weepy since then.
I hurt for my boy who wants so badly to do the things he just can't. I can't imagine that it gets any easier as he realizes there are more things he wants to do. For now, he would be happy to be able to hold a toy in his mouth, suck his thumb, or sit up.
Does it make me "anti disability" to wish I could heal him, that he didn't have to struggle? No, I don't think so. It makes me a Mom. I want both of my children to be able to do whatever in life that they choose to do. And today, William wants to chew a toy.
Cerebral Palsy sucks.
20 comments:
I am sending you a BIG hug.....let's meet up soon so I can give you a real one.
Lisa
(((((HUGS)))), I'm sorry today's EI eval was so hard for you Lisa. You are completely right, you are just being a mom. A wonderfully fantastic mom that William and Margaret are incredibly lucky to have. Let me know if you need to vent.
I can totally relate to what you are saying as those feelings are exactly the way I have felt during this journey.
Wish you lived closer so we could get together.
((HUGS))
William worships you. What a wonderful look of love on his face.
Your right, it does suck. I spent a lot of time avoiding other families so it didn't get thrown in my face. Easier said then done. And it's usually the unexpected times where it gets you. This morning I was setting Moo up in his wheelchair at kindy and listening to a conversation between his carer and another lady where the other lady said her husband was born at 7 months and is perfectly fine. It's like - lady - are we invisible?
Sorry for the long comment but Lisa, you aren't alone. And if it makes you feel any better, i don't think the kid misses it as much the mother torments herself about it (does this make sense?) - I noticed this morning that Moo has his carer wrapped around his finger and has her doing stuff that I know he can do. Maybe CP has small advantages.
Hey you. I completely agree with what you said. It does not make you a person who is against disability, or not thankful for her son, or who doesn't love him because you wish he was able to do things. I too sometimes look at other babies and see how efortlessly they do things, while it seems so much harder for S&E...I especially worry about this when they become school-aged. I am sorry the eval was tough today. You are a great mom...don't ever forget that! ***HUGS***
Lisa,
Like you with your William, I too know my son is very delayed, but we are coming up on his 6 month EI eval as well as a developmental pediatrican appointment and I am just dreading them. It is two very different things to know something and to hear a professional confirm your thoughts.
More than anything Fletcher would like to chew on his hands, but it is just possible, yet.
We also have a functional vision evaluation coming up with the Children's Center for the Visually Impaired. Fletcher's eye exams have checked out okay, but I am worried about CVI. I would love to bury my head in the sand about this issue, but a mom just knows when something isn't right.
It sounds like our sons are facing very similar roads ahead of them. I have been terrible about blogging, in fact, I haven't even mentioned Fletcher's disability on my blog yet. Not sure why, I think it is mainly because I want to convey what a shock the brain damage was to us, as he had no typical precursors (no bleeds, etc) and that would be a very long post. Anyway, if you ever want to commiserate, feel free to email me directly.
Take care,
Erin
I'm so sorry that you;re going through this rough time. I went through a period last year where I blamed myself for every little thing that Noah couldn't do. It's hard to watch other children make developmental progress and know that your child would be making the same strides if things were different. William and Margaret are lucky to have a mama like you on their side. Hang in there!
I wish I lived closer so I could give you a big hug and some 'mommy time off' ... did you see the post on some of the other blogs about the 'happiness' study? Its good news :)
As 'moms' I think we're so much harder on ourselves than is deserving - at least I know I am. I'm finally at the point where I can stop blaming myself for her really hard first year...
In the end you'll have a beautiful boy who loves and appreciates his mom and will revel in what he CAN do, and not what he CAN'T.
Much love to all of you - I hope you feel better soon
Lisa,
I "know" you from the BC Preemie Parenting site. My kids (twins, born at 28 weeks) don't have CP, but I wanted to say that they really took their time developing.. I remember their 6 month EI appt. The doctor evaluating them seemed really concerned: did not say so, but I could see it in her expression, and in the way she instructed us to do all kinds of things to try to stimulate them. And, frankly, they were not doing a whole lot at 6 months; she was probably right to be worried. But literally a few months after that, their development suddenly took off. We just had their 3 year visit this year, and she shook my hand, and discharged them. So, this is just to say that sometimes the 6 month EI suggests a more gloomer outlook than actually materializes.
William is super cute.
Best wishes,
Ivanna
Hi Lisa,
I felt the same way when AJ was E's age. Now he is turning 3 years old and I still feel the same. People said that he would catch up by this age and now I'm terrified that he hasn't. I have a 1 yr old that is very normal, and extremely smart and active for his age. I agree whole heartedly. It's very hard to look at your child and realize that he may miss out on so many things in life.
I could have written this myself. I dread Makily's eval and I HATE saying "no" to so many things.
Like you I KNOW she is behind but hearing a professional rattle off different things about all your child's problems and how severe they are is HORRIBLE. Her last eval I honestly envisioned myself sticking my fingers in my ears through the part where they say what level she is at in each developmental area.
I long and ache for the same things you do. I would give my right arm to make Makily better and to take her struggles from her. At times I catch myself wondering what she would be doing if she was a "normal" kid. Don't get me wrong I wouldn't trade her for the world but I would do almost anything to make her life easier and see her experience the things that she is missing because her body won't let her.
this is something I struggle with, more than I like to admit.
Sending HUGE hugs your way. I know it's hard.
Hi. I don't know you from Adam, but my own son suffered a severe brain bleed and I live in the NO area. IS there a support group or anything in this area for these types of kids? The whole thing is very hard.
I wish I could say it gets easier...I know that feeling all too well. fact- comparisons hurt. fact- progress, no matter how tiny the steps bring joy, relief and pride. Celebrate each and every, in your words, "inchstone"!
He just looks like the sweetest boy!
Hugs to both of you,
Carolyn
It is hard. I avoided families with normal kids too for awhile. It didn't help that there were three close friends and family members who all had kids the same time I did. CP does suck and I think it's normal to feel bad about it.
He is such a beautiful little boy, that won't change.
Hugs,
Kathryn
Katy,
I tried to look at your profile page but it isn't available for me. Please email me and I can tell you what little I know about support in our area.
Hope to hear from you soon!
Lisa
I understand 100%. I've been there. I AM there. It's hard but we as mother's will manage. ((eHugs)) You are the perfect mom for him. A lot of women can't do half of what you do.
P.S. KEEP HIM OUT OF NJ!!! He's too cute!
I think every preemie mom faces these feelings and we can all relate to it. I know that I used to look at other babies in the NICU and envy their mothers because they could hold them and feed them and Michael was in isolation for so long. It took 14 weeks before I could kangaroo him for the first time. But then, something bad happened to those babies and I would feel guilty about the feelings I had before. What this taught me is that every child is unique. You really can not compare them. Even twins have different time schedules in their development or growth. Maybe our babies have some delays, but they are so special!!! I try to think every day of the good things Michael has brought me. I 'met' all these wonderful moms on the Internet. He gives me so much joy every day and I keep thinking that it all could have been so much worse. You are doing the best you can. It is only natural you get down sometimes, but just look at your baby boy and see the beautiful smile and all the joyful moments he has brought you so far.
HUGS Lisa! CP sucks... I totally agree. Logen is 4, and I am still avoiding playgroups with normal kids!
I'm having one of 'those days' myself, so I cannot think of any great advice to help cheer you up. Sorry... just know if ya need to vent- I'll 'listen'.
I can totally relate. CP does suck, and it is very, very hard to see your child struggle so much to do little things. I won't say that it doesn't get better though. I still have days when it is terribly hard, but I think now, after three years, the good days outweigh the bad. Most of the time, I just feel incredibly proud of Eden's accomplishments, and small as they may be.
I definitely agree with Jacqui on the idea that sometimes I think it is harder on us as moms, than it is on them.
You are in my thoughts!
Billie
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