What? How is that possible? Can I call them babies still? Don’t answer that.
I am so beyond irritated with myself for not keeping up the blogging this past year, but I’m also trying to be a bit gentle with myself seeing as it’s been a whirlwind of emotions and baggage and fear and thrill and yeah, I was getting by but not with a whole lot of stability. Most of my down time was spent trying to get my mind off of it. Pinterest has become way, way too big in my life.
I’ve turned a corner. I’m feeling more control, more stability. Normal is becoming more normal for me now, my old visions are fading and acceptance, and even happiness, are back in my frame of reference. Breathing isn’t so hard, crying isn’t so frequent, and laughter can be heard often. It’s so much better.
So where are we?
The littles turned two at the end of October and spent their day at the zoo and playing with Mommy and Daddy. We had a birthday party and other kids came to celebrate and our house was filled with lots of people praising me for my dessert table and my color theme and showering gifts onto two very disinterested toddlers. We drank wine and beer and allowed juice boxes and cake upon cake for our two year olds. Then B and I left them with a babysitter and went to a Halloween party dressed in togas. It was great!
Grace is singing and dancing in almost every moment of the day. She wants to be heard desperately and exercises her independence at every chance she gets. She loves dogs and torments our poor cat with incessant chasing and sweet, sweet hugs when she can get her hands on her. She is obsessed with the idea of school buses and every single member of her family and anyone else who has a name in her mind riding one with her to undetermined locations. She sings her ABC’s all day long, skipping that elusive “mno” portion to get right to the all important P. She counts to ten without messing up now, but I loved her mixed up 3, 4, 7, 9, 5 better than this new correct version. She shakes her booty likea champion and can elicit a chuckle from any poor innocent bystander who happens to be within my view when I feel like showing someone the most recent video of her mad dance skills. She adores her cousins Kate and Everett and talks about her Aunts and Uncles and Grandparents whenever given the chance…
“Grace, the phone is ringing- who is it?”
“What’s he talking about?”
“Nana! Date! Errett! B! Cole!” (Nana, Kate, Everett, Uncle B, Aunt Nicole)
“Oh, do you want to go see them?”
“Yes. And Tayen tum too!” (Yes, and Caleb will come too!)
She loves her brother. Whenever I ask if she wants to go somewhere with me, she always asks if “Tayen” can come too. Why she still calls Caleb Tayen, I’m not sure. But I’m not changing it anytime soon, I’ll tell you that much. This time is all too quickly passing.
She brings him his sippy cup whenever she thinks he might want a drink. She finds a toy she thinks he might like if he’s throwing a tantrum. She pats his head if he’s crying. And she tells him she loves him every night before bed, even without a response in return. She is my role model, and I am certain beyond question that my children are going to change the world.
Our little man has an army of love, from his twin sister’s ever present tolerance and thoughtfulness to his miracle working ABA therapist, affectionately called his BFF. If you asked me 9 months ago if I felt like we had the support we needed, I would have started crying. I was fighting a losing battle against our Early Intervention program to get Caleb adequate therapy. I was on multiple wait lists for specialists, therapists, and evaluations. I was spiraling out of control. My depression had taken hold of my hope for the future and my ability to see beyond the crumbling pieces in front of me. Sure, I had good moments and good days. I could hold it together some of the time. Then I would think about life.
Caleb had his first seizure at 8 months and his first MRI a day later. He got his first official diagnosis, Cerebral Palsy, at 10 months and then was approved for long term care before his first birthday. He was diagnosed with Autism at 19 months and started ABA therapies by 21 months. He got his Neuromuscular Scoliosis diagnosis at 25 months and just got his most recent diagnosis of Peri-ventricular leukomalacia (PVL) last week at 27 months. He had his second MRI in January and it confirmed loss of white matter volume, thin corpus callosum, and delayed myelination. They think he may have had a brain injury in utero around 24-28 weeks, but there is no way of knowing. He has no scarring, just the white matter loss/PVL.
Nine months ago, that report would have been another reason to crumble. Today, that report is full of answers and hope and optimism. Caleb had a CP diagnosis for unknown reasons. Cerebral Palsy is a bucket diagnosis for brain damage that causes motor dysfunction. Caleb had some brain abnormality, and absolutely had the motor dysfunction, but what was the damage. Usually there’s a brain injury. Usually there was trauma. Having a more clear picture that something happened isn’t a sad story for me
anymore. It’s a piece to the beautiful puzzle of Caleb. My boy who will change the world. He also has delayed myelination. DELAYED! That’s such a wonderful word in my world. Developmental delay is very different from developmental disability. We have assumed developmental disability for a while now, and I've come to terms with that, too. But the possibility that some of it is delay...wow. Delay is full of optimism and hope. His neurologist actually said that he can pick up some of these delayed skills, he just needs time. No guarantees what it will look like for Caleb- we might find that what is now classified as delayed myelination is in fact defective myelination, but for now there is no reason to assume he can’t develop. And he’s proving that every day.
Caleb is walking. My little boy is walking! He stopped using his walker all together a couple of months ago and now he can walk unassisted for over 100 steps at a time! He just started standing still unassisted this week and he stood for two straight minutes yesterday, while grabbing food from his therapist and feeding himself; a HUGE milestone to check off the list for our amazing son. He climbs up the stairs and pinches cheerios with two fingers to put in his mouth. He can fit the cylinder into the shape sorter almost every time and is getting pretty good at the triangle and square. He pushes buttons with two fingers and sometimes even just his pointer finger to turn toys on and to use his speech device to speak to us. He differentiates between two different buttons on his device most of the time and makes choices between two separate foods he wants to eat. He matches like 3-D items about 70% of the time and can hold a crayon to draw a vertical line and “color” for a few seconds at a time. He gives the most incredible hugs and will plant his closed mouth right onto your face for epic 30 second kisses if you ask for it in just the right way. He waves hello and goodbye and greets every.single.person he meets with a speed crawl/walk straight toward them and then a shake-you-to-your-core gaze straight into your soul. Of course, immediately followed by a huge smile and possibly a massive hug or a pounce right into your lap. Love.
Of course, I still have realistic expectations. I don't think Caleb will start brushing his own teeth in the next year, and I know we will struggle with getting Caleb to interact appropriately with his peers for a while, but who knows what five years from now looks like!
I would spend hours thinking about ten years from now, twenty years. I would fixate on that "he won't be able to make it without me" phrase over and over and over. I would lose myself wondering who would take care of him, how he would survive, what he would think of his life. Those thoughts aren't gone. There's not a piece of me that is sure Caleb will ever live on his own. But there's a piece of me that wonders if he might now. A piece is actually optimistic about true joy in his life, and all of me is aware of the amazing impact he can have on us...on all of us. If he chooses to. And I think he will.
Caleb is very special, in so many senses of that word. I have yet to meet anyone with all of Caleb's diagnoses. There isn't a story out there that I can follow along or learn from, one that matches my son. At first that was daunting and lonely. Now it's liberating and almost exciting. We're writing the book with Caleb, and he's exceeding so many expectations every single day.
I've also been very blessed with doctors who don't box Caleb into a bleak prognosis. Optimism follows wherever he goes. The least optimistic thing we've dealt with is his neuromuscular scoliosis = a probable spinal fusion in his future and possible lung complications along the road. But we found an option right now to give us that hope and that optimism we were lacking, and I'm grabbing on with both hands- something I would have hid from a few months ago. I didn't want hope, I was sure it would only crush me. Now I look for it, as much as realistically possible. :)
So there it is. Our story isn't easy. It isn't fairytales and rainbows- but who's is all the time? I know that I'll need this space to vent about the frustrating times, the down right impossible times, and even the depressing times. We have those, sometimes a lot. Sometimes it really feels like too much, and I'm not going to hide that. I've come to a good place, I think I've gotten through the grief cycle for the third time now and I'm optimistic that it's enough, and I'm ready. So I also need it now to shine those hopeful moments and those amazing miracles that we get to see so often. I hope you'll stick around- even if I can't come back as frequently as before. We are still here, and I think we might just change the world. Aren't you excited??
|Their 24 month photo shoot! I loved it!|
|We hung balloons over each of their doors for their birthday- the loved it!|
|Amazed to say this is a thing of the past. I can't believe it.|
|Grace picked a pumpkin at the patch for every one in the family, including two for her favorite- the cat.|
|Out of order...but their birthday zoo trip!|
|Whenever Grace is crying in timeout, Caleb crawls up to her to check on her. Sometimes he'll throw in an extra hair pull or face scratch, but usually he just wants to make sure she's ok... ;)|
|Halloween! The Tortoise and the Hare! :)|
|Every time we go to the park, Caleb goes right for the swing saying "Wa" which means Wee or Swing! He could swing all day long.|
|Caleb's first attempt sitting in an actual chair with no straps AND drinking from a real straw! Champion of the world!|
|We don't usually do fast food, I swear. ;)|
|This is how we watch football in our house.|
|Caleb has a swing in the play room, but Grace shares it with him sometimes.|
|Grace after exploring a giant bottle of vaseline. Lovely.|
|Grace's first tricycle!|