Mason painting.
We've had Mason's new glasses for over a week and they're working beautifully. He adjusted to wearing them with no trouble. It has been amazing to watch the difference wearing glasses makes - his eye almost never turns inward when he is wearing them. Take the glasses off and his eye begins crossing within a minute. I'm grateful for simple solutions!
How do you explain to someone that your child will never walk? Permanently disabled is not something that should describe a 2 year old and yet it describes my son.
Usually that doesn't register in my mind, we are so busy living this wonderful, messy, normal life. Mason is the typical two year old who charms you to get what he wants, has the occasional tantrum and tears, and gets into everything not bolted down. He is smart. He loves Curious George. He likes books. He laughs and smiles and has favorite songs he wants you to sing twenty times in a row.
I haven't used our new accessory yet. I'll be hanging it Thursday when Mason and I head to Children's Hospital for his Brain and Spine MRI under general anesthesia. I hope it feels just like any other day but I'm afraid another little piece of my heart will break because of it. On a day when I'm already overwhelmed at what we are facing, a day when results will decide when we go in for a surgery that could change our lives, I don't want one more thing to remind me how different our life is.
Instead of worrying about what is coming I'm choosing to focus on today. And right now that means a little man who has escaped up the stairs again and needs removed from the bathroom before he plays in the toilet. Again. Boys!
I LOVE how is glasses match his hair so perfectly. He is absolutely adorable.
ReplyDeleteHi Tristan,
ReplyDeleteas for the kind lady... I understand you.
That's why I started describing SB as "paraplegic from birth"
It sounds dramatic but it's just simply what our children are.
The good thing about this description is that people don't think of mental disability as they would when you say "permanently disabled"
In my language (and my country's law) "disabled" describes a condition that remains the same for 6 months or more.
So adding "permanently" is not necessary at all...
All the best for the MRI.
As for the tension and everything ... before you do a TC-surgery, consider seeing an osteopath.
Ours did miracles to my daughter just be lying the hands on her head.
We have an appointment every 2 - 6 weeks.
She sleeps much more relaxed now (no more bent like a Z: head in the neck, legs bent at the hips and knees stretched out)
At some point a surgery can not be avoided but osteopathy is also recommended by some experts when it comes to TC, ACMII and Syrinx.
However it's not as "official" as other things so even over here the insurance doesn't cover it.
Greetings from Germany
Steffi with Amaya
Hang on. Some days are harder than other, aren't they? I'm sorry. Just hang on. You're doing such a good job!
ReplyDeleteTristan,
ReplyDeleteAfter I read this (I did not have time to comment then), I wondered "will these be the emotions I will have? will I feel these same things?" So many unknowns while we wait!
Thank you for pointing us to choose to stay positive. To choose joy. I am going to work very hard to have those kind of responses too.
Those orange glasses are ADORABLE! Mason is terrible cute in them! I love them!
Will be saying some prayers for you all.
Steph
I agree with the recommendation to see an osteopath first. It used to be a standard of care everywhere, but in America pills and surgery seem to be the first course of action for the majority.
ReplyDeleteI really feel your pain over the handicap placard. Each time my daughter had another test and the doctors revealed another thing "wrong" with her, my heart just broke for her and I grieved and grieved. After breaking my back carrying her, at first, I was so relieved when we finally got her placard (she was not "bad enough" to need a wheelchair). I hope that after using your placard a few times you will see it as your new best friend, despite what it means that you have it in the first place. 15 years ago, the cranial surgery that my baby had last Nov. wasn't invented yet. I can't wait to see what's been invented 15 years from now for our kids with SB and related conditions.