I can’t tell you how many times I’ve been asked, “Do you see how well Gray is doing?” “Isn’t it exciting how well he is doing?” “Have you noticed how well he is doing?” I think these are all questions of good intentions but inside it makes me internally roll my eyes. LOL. Yeah, I’ve noticed. We are living it. Of course, I’m grateful that he is healthy and thriving. Having a healthy kid makes life easier, its that simple.
We have lived two different realities of raising kids. Its not an easy task. There is a big difference in the childhood that Magnolia has had and the childhood that is forming for Gray. We already see it. We’ve discussed it several times, it’s like living in an alternate universe and the original universe, at the same time. I’m sure that’s confusing, but so is our life. As a family unit, we work everyday in finding the balance for both of them. It’s hard – Magnolia’s needs outweigh Gray’s infinitely. He is 2 1/2, he can climb in to his chair at the dining table. He will sit, eat, drink, and converse with no problem. Most of the time he is leading the conversation. His language at 2 1/2 is really good. Last night at dinner, he told us he had a nightmare about a shark eating his hand and that’s why he screamed for daddy in the middle of the night. Mags has nightmares too but we have no idea what they are about, just that she says “scary, bad”. She’s not descriptive about what happens in her nightmares.
Gray and Mags have started to team up. At least, Gray has figured out they should team up. He will tell us Mags wants a cookie, and he does too. She’ll laugh and look at us smiling. He is definitely on Team Magnolia. Or at least his version of what Team Magnolia is, and that seems to be the team that likes desserts but hates veggies. As cute as it is seeing them bond, some days, it’s just hard to think about how different it could have been. I try not to think about it, but everyday is different, so it is hard not to think about. Honestly, we live with our daughter having Rett Syndrome, its hard not to think about. As type this, Mags is lying down because she had 6 seizures this morning. Everyday I have to tell myself to focus on the present and not the reality that didn’t happen. Watching Gray grow up is an entire different ballgame, he is 2 ½ and his skills aren’t lost on us.
I think about when Magnolia was 2 1/2 years old…
She was just the cutest little thing. She smiled at everyone, she loved to chase and hit balloons. She loved to go to the park, swing, play in the sand and walk around in the grass. She loved to draw with paint and chalk. She loved playing with our dog Gilmore, throwing the ball for him. She loved to run. Our favorite place to go was the zoo.
At the same time…
She hated going to restaurants, music class or any place loud. Festivals, farmers markets and fairs became too chaotic for her. It was sensory overload. She had previously loved all of these places. She stopped progressing in her speech. At the peak of her language, she was speaking two word sentences, and had 75 words that she used. I know because the speech therapist made me write down every word that she used and how often. She started rubbing her fingers. She would wave her arms when she was excited. She had a hard time calming her body to go to bed. She began to meltdown all of the time. This was the time between 2 1/2 and 3 years old.
All of a sudden, she went from needing a little bit of therapy and everything will be fine to needing a lot more therapy and she should be okay, ultimately getting diagnosed at 3 with Rett Syndrome and our world collapsing.
It took years for us to really pull ourselves together. Sure, AJ was blogging and doing videos and trying to raise awareness for Rett Syndrome. I was getting involved in local Rett events, meeting up with other families and also running half marathons. But we weren’t really okay. We were putting our best foot forward.
Now that Gray is 2 1/2 years old…
Its a whole different ball game. He has tons of language. He can explain in detail, most of the time, what is bothering him, what he needs, what he wants and whatever it is that he needs to communicate. He is figuring out Magnolia’s computer. He wants her to communicate with him. He is learning her yes/no. It’s pretty amazing, since there are adults that get confused by all of her ways of communicating. He is smart and because she is too, they will figure it all out.
His physical skills, motor planning, language and complex directions are not lost on us. Yesterday, Gray and I made a fort. He decided he wanted an apple. I said, I would get him one. He climbs out of the fort, picks up a small chair,starts to carry it to the kitchen. He tells me, “No mommy, I go get the apple and a knife.” Obviously, I stopped him, but I loved everything about the scenario. The independence, the forethought of carrying a chair to the kitchen, knowing that he wanted to have apple slices and not just an apple. For some of you this seems simple. But for us, this was amazing.
At the same time, there is no comparison of either of their skills. We are constantly amazed by Mags but wish it was easier for her. We are in awe of Gray’s skills and how fast they come for him. He is strong, he can pick up his sister and is also her biggest fan.
We try to balance our attention to both of them, make sure they both are prospering. As they both get older, it actually is getting more manageable. For those that don’t fully comprehend the difference, this should explain it. When Magnolia was 6 years old, she was having a really bad day and couldn’t walk. Gray was 9 months old and crawling. I was by myself at home. I needed to get Mags upstairs to bed. I had both kids and couldn’t leave Gray by himself. So I told Gray to crawl up the stairs in front of me. As he crawled I carried Mags. He was smiling and happy and I kept encouraging him to move forward. It took awhile because, we went at his pace. I would let Mags stand and try to step up, but she really couldn’t, so I would pick her back up. Team Magnolia made it up the stairs. We all got in Mags’ bed, read stories, and giggled. It was one of those moments I realized Magnolia’s younger brother will be stepping up to help us, way before he should have to.
There isn’t a day that goes by that I’m not grateful for the love and strength that he brings to her. Their childhood and relationship is both beautiful and heartbreaking at the same time. They both want to play, its just harder. He is having to be more patient, more empathetic and process more than most kids his age. At the same time, his skills have been advancing so much, it has made Mags a little more competitive. On her good days, she pushes herself to do the things he is doing, without us having to help her. It’s that fire in her belly, that lets me know. She will be okay. They are the cutest and fiercest little Team Magnolia. They are great for each other. They will both end up being wonderful surfers and also doctors. I just know it.