A little piece of heaven

I’ve written 1111 posts on this blog. It’s kinda fitting for this to be the 1111th post. It feels like we’ve finally hit our stride.

When I started this journey 5.5 years ago I never would’ve imagined to find myself where I am today. And where is that, you may ask? Today, I find myself at a place of acceptance and enjoyment.

When Nathan was younger I truly believed it was my mission in life to help Nathan accomplish his full potential. I read so much about brain plasticity and I believed that, with enough stimulation, Nathan’s brain HAD to change and improve. I believed that it wasn’t a matter of IF, it was just a matter of figuring out what was enough, and what the right kind of stimulation was.

Here we are, 5.5 years later, 3 stem cell treatments, 6 medek intensives, 80 Hbot dives, 1 year of G-therapy, 2 intensive therapies later – and Nathan is still not sitting, holding up his head, or able to use his body at all.

But you know what – I don’t have any regrets. We did everything we could. I am so grateful for that. I know without a doubt that Nathan’s brain just simply couldn’t adapt to the damages.

And now I know my mission was all wrong. It wasn’t my job to help Nathan fulfill his full potential. It was Nathan’s job to help me fulfill mine.

So now that we are past that, we’ve hit our stride. We have accepted Nathan’s limitations and are now starting to adjust to the next stretch of our lives. We are starting to talk about accessible houses, wheelchair vans, etc etc.

If you had told me I would’ve felt this way, I wouldn’t have believed you. But you know what, I am glad. I feel happy. Fulfilled. Nathan is an amazing human being. A joy to be with. He brings so much love and happiness to all of our lives.

I celebrate this 1111th post, with gratitude for how far we’ve come.

I don’t seem to have much to say lately so I think I will just start writing short posts about our day, that way I can still keep everyone posted.

We’ve hit our groove lately. Nathan’s new nurse started a week ago and she is A-MAZ-ING. She’s so on top of her game, making sure Nathan takes all of his meds and supplements, eats and drinks enough during the day, and gets EVERYTHING he needs. She is with him 7 hours a day and in just one short week Nathan has gained weight, looks better hydrated, and seems happier in general.

Today Nathan had a good day at school, he was really happy and enjoyed his time with the other kids. His team worked on improving his calibration on his Dynavox and on new ways to incorporate it into the curriculum. He did great in his Medek therapy and stood really straight – we can see that his back is stronger and his hips are more stable.

Izzy ran a fever all of last night and was a mess today, very achy, tired, whiney. She wasn’t her usual rambunctious self and spent most of the day hanging on to me. I took her to Target to buy some toys for her, as I am preparing to start a program called Play Therapy with her, and she fell asleep in the Ergo baby carrier, which has never happened before.

Gryffin had a great day. We assembled his new exersaucer and he loved it. He figured out how to make it turn around in circles immediately, and even though it is not a bouncing exersaucer, he figured out how to bounce in it. Our boy is a bouncing fool. He spends most of his free awake time on the floor crawling and playing but I like having this alternative so he can be upright after he eats for a little while.

We met with the RN who manages our LVN and she was really pleased with how everything is going with the new nurse.

I was able to write in my journal today and I now have a clear vision of what I want to accomplish this year. I plan on working on my vision board in the next few days now that I know exactly what I want. I felt grateful for all of the changes that the last 12 months have brought to my life, journaling being a major one that has changed everything for me.

Anyways, today was a good day.

* When I dropped Izzy off at her Montessori school today, the teacher commented to me, “That girl. She’s a big huge brain with legs. I’ve never met such a smart kid!”

* She’s talking in sentences now. Instead of saying “Water”, she now says, “I want water please.” When I have the baby and she wants my attention, she says, “Gryffin goes night night. Izzy’s turn.”

* The other night, I told her to go to bed. So she walks into my room, and climbs into our bed. She tucks herself in, and says, “Izzy’s bed.” She used to agree to go to sleep in her bed, then wake up in the middle of the night to sleep in our room, but as of a few days ago, she won’t even fall asleep in her bed. One night, I’m in a deep deep sleep and hear, “Mommy, HEEEEEEELPP, my FOOOOOOOOT!” Sure enough she had fallen off the bed and slid between the frame and the rail. What 20 month old has the presence of mind to ask for help at 2 in the morning, instead of just crying?!!!

* Owen was trying to put her down the other day, so he said, let’s go to bed Izzy, daddy’s tired. So Izzy says, “Ok daddy. Daddy night night. Bye!” She leaves him on her bed, and walks over to our room and asks me to play on the ipad.

* Guess what is Izzy’s favorite app on the ipad? NETFLIX. She knows how to turn it on, surf through the shows, she finds Dora, and turns it on – all by herself. One day I found her sitting down watching Dora on the Ipad, without any help at all from anyone. Did I mention she can app surf? She is able to play any game I have on the ipad. One of her favorites is Monkey Preschool Lunchbox. She has mastered that game.

* And did I mention she’s addicted to Dora? She now has a Dora quad, Dora shoes, shirt, pants, plate, spoon, cup, potty chair, stool, flashlight, and who knows what other Dora things we have floating around the house.

* A few weeks ago she decided she was old enough to pick out her clothes. So every morning she will go to her closet and select what she wants to wear. If you ever see her in a striped shirt, flowery pants, and bight green socks – don’t blame me, it’s not my fault! She has this thing about socks – no matter what she’s wearing, she will always pick the brightest, funkiest socks! She refuses to wear plain white socks and always demands the colorful ones. Oh, and a few days ago she decided she needed to dress me too. So whenever she can, she pulls out clothes and shoes for me, and if I don’t wear them, she gets very upset! So if you see ME all mismatched, now you know why!

She is such a character!