What goes up must come down....with highs there have to be lows. Yes, I
was singing my daughter's praises yesterday. Today was my off day.
Hailey had PT this morning. Our typical therapy model is to combine pt
and speech together. I was leery about doing the therapies together but
it has worked great and Hailey thrives with it. Last week, her pt was
on vacation and today her speech therapist was out of town so we did a
full hour of physical therapy today. Hailey did good...I'm very proud
of her. I figured she would give up about halfway through. She did
great until about the last 5 minutes.
There was a
student with Abby (her therapist) this week. She asked if Hailey was
about 9 months old...nope...not close. Abby was great all through
therapy, pointing out Hailey's strengths and I'm happy to say there were
quite a few. Hailey was cooperating. Therapy was going good
until...we started talking forward.... Her therapist said she doesn't
look for Hailey to walk before two and only anticipates a couple steps
by then. She then followed with saying she would like to get Hailey
fitted for braces at her next appointment in two weeks and she would
have them in 4 weeks.
We exchanged good-byes and said
we would see one another at the Buddy Walk. Hailey and I headed to the
car...I buckled her in...loaded in the stroller...climbed in the front
seat. It was there that I broke down. I sobbed. I'm not sure what
triggered it. In my mind, I've not been anticipating Hailey walking
before two. That is the average age for children with Down syndrome. I
anticipated braces...we talked about them now for a couple of months
now. So why the tears? I really don't know. I was hoping that Hailey
would beat the average age. I was hoping that her pronation (the
rolling inward of her ankles) would get better and she wouldn't need
braces. I'm not in the mood to make the long string of phone calls to
the insurance company and providers to make sure that insurance covers
even part of them. I am bummed that Hailey has something more for
people to stare at her. I am sad that the girl is fights harder for
everything she does has to deal with more. I cried for about 10 minutes
or so.
That was 6 hours ago....now I am better. Is it
that big of a deal that she has to wear braces? No...it is better for
her to get support. Hopefully, it makes walking easier for her.
Hopefully they will make her stronger. Her not walking until 2....just
have to deal with that one. I really wasn't anticipating it any
earlier. This girl was fighting for her life a little over a year
ago...in the grand scheme of things, this isn't major. It is just
sometimes the little things sting and can set you off.
We
will take the same approach with this that we have with everything
since the day she was born. We take each obstacle and victory as they
come and we do everything in our power to help Hailey (and all our
children) become the best and strongest person she can be.
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| Concentrating on her wooden puzzle |
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| Taking care of her baby |
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| I promise I didn't teach her to hold the baby by her hair! |
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| Snacking on her favorite treat right now...veggie straws |
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| Apparently she wants to take these "to go" |
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| Oh how I love this girl! |
Oh my gosh she is such a doll! Love those expressions.
ReplyDeleteThank you!
DeleteYOu are doing great and it's OK to feel that way sometimes. We're in the same boat with orthotics/braces, but I am super excited about them because I really hope they will help. You already know that Hailey is leaps and bounds ahead of Cora in the gross motor/standing/progressing to walking process. If Cora walks by 2-1/2 I will be shocked. But as much as I know that and accept that, it can still hurt sometimes. Good luck getting it rolling. If you have any insurance company advice afterward, let me know! :)
ReplyDeleteI wonder why when we hear the truth (that we already know in our heart) it hurts more or maybe it is just timing. I think it was the student asking if Hailey was 9 months old....then tonight I saw her by a 10 month old and he was bigger. Truth hurts sometimes. Oh well...we still have the cutest, most lovable, perfect girls in the world :-)
DeleteThanks for keeping it real. I sympathize with the unexpected hit to the heart. They come out of nowhere sometimes.
ReplyDeleteHailey is cute as can be.
It is hard because you subconsciously have certain expectations, we all do. Children situp then shortly after crawl then shortly after they walk and when that does not happen it's hard, and when it keeps not happening and you can see they are physically able it gets even harder. Every day you submerge the pain until one day you get confirmation of that which you already know and you cry out the pain and then comes some relief. And you start over again.
ReplyDeleteWhen Bridgie turned two and still was not walking, I began to share some of my pain and frustration with family and friends. I said that it was like having a 10 month old for almost a full year, except that she was not 10 months old she was now two and two year olds get heavy especially when their muscle tone does not allow them to help or hold on while being carried, and they don't automatically bend their legs when you try to put them into a grocery cart or playground swing.
Not such a big deal but over the course of time it becomes physically and emotionally draining.
Good luck to you and keep your head up she is doing great. For the record, Bridgie began stepping at 2 years 3 months.
Thank you! You do submerge it and it always surfaces when you least expect it and you deal with it! You hit the nail on the head...I have been carrying around a 10 month old for 8 months. It is hard to explain unless you have lived it.
DeleteI'm so happy you are feeling better but I am sorry that you were feeling so sad. I'm hoping Ben will be walking between 2 and 2.5 years. I will be shocked if he would before that. From my point of view, Hailey is doing so amazing. She is more advanced than Ben and she is younger than him. Hugs!
ReplyDeleteThanks! Now, a day later I'm almost embarrassed that I was that upset over things as simple as braces that will only benefit her. I was talking to a friend about it who isn't even sure if her son will walk (he has cp)...then I felt like a heel! I'll be fine...just hit me the wrong way yesterday!
DeleteI totally understand Michelle! This journey is full of ups and downs, isn't it?
DeleteOh man, we are sitting in the same boat. I have had bizarrely similar experiences this week. I called the hospital trying to talk to a specialist there about needed to evaluate her feet...I had to leave a message and he never called back, so that made me feel super. Hailey is so blessed to have you as a mama. We are strong! This has all got to pay off... and you know, these kids are worth it.
ReplyDelete