What we didn’t know

There were many things we knew when we embarked on this unknown  journey. We knew it would be extremely hard. We knew we would need a tremendous amount of support. We were told seizures are likely. We were told by his specialists that keeping him healthy is very important; small illnesses could send him to the hospital and end up being “big.” We were told that, yes, his cerebellum would likely deteriorate until there was basically nothing left. All overwhelming and very scary.

What we didn’t know is far more important.

Last night as I was rocking him after a bloody nose I looked in his eyes and thought about what we didn’t know. We didn’t know that our family would become stronger. We didn’t know that our little boy would help us see life with a different perspective. I didn’t know that my faith would grow and I would spend quite a bit of time thanking God instead of making requests. We didn’t know that people would surprise us in amazing ways. Diapers delivered to our door. Warm meals handed to us right at dinner time. Drinks and laughs with great friends. A benefit that was far more than we could have imagined. The generosity of everyone was simply amazing. Oh….and his smile. We never could have known that his smile would touch the hearts of hundreds of others. We had no idea the amount of magic that he could hold in his sweet, charming grin.

We knew that navigating this rocky road wouldn’t be easy, but what we didn’t know is that so many people would gladly walk next to us. They would be there to catch us when we stumbled. They would lift us up when we fell. You. You would willingly be part of TEAM CHRISTOPHER. This is far more important than what we did know.

Oh…and let’s not forget that we had NO idea that he would have the best hair in the history of hair.

 

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We knew

I tried to prepare myself. I said it wouldn’t matter, but as tears stream down my face it does matter.

I don’t think you can truly prepare yourself for the words “significant progression.” We knew. We knew that it was highly likely that his cerebellum would continue to shrink. For goodness sake I just wrote about it! Words stuck in my throat while on the phone with his neurologist. I tried to hold back the tears but couldn’t help it. His neurologist just listened as I apologized and she said “sometimes you can’t prepare for certain things.”  I cried. I couldn’t talk to her. I apologized again and tried to compose myself.

She said things like “markedly different” and “noticeable change.” It’s extremely hard to hear this. It sucks. It sucks to know that this rapid progression will likely continue until there is nothing left, just as we knew. Even though we’ve been told this it never felt real until now. It’s real. Our baby’s “little brain” is most definitely shrinking, and according to his neurologist, rapidly. This is where I want to insert a bunch of profanities but I’ll refrain.

“He’s going to achieve all that he can because of what you do.” This is what she said to me as we ended our conversation. She’s right. Her scans can tell us what is going on inside but I’ll focus on what he’s showing me outside. As I look at him he’s sticking out his tongue and making raspberries with his sweet lips. He’s rolling over and grabbing his toys. He wants to sit up and play, he can even prop sit for a few seconds alone! He loves to interact and charm the pants off of others. He reaches up, touches my cheek and grins. Significant progress. That’s what we’ll focus on. Not “significant progression.”

I can’t lie though. It still sucks. Really really bad.

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Determination

I can’t help but sit here and feel anxious for tomorrow. I can’t exactly decide how to feel. Should I feel hopeful? Should I feel sad? What way should I go?

Tomorrow our son is having a repeat MRI to assess his cerebellum. His neurologist wants to see if his cerebellum is still shrinking and at what rate. Shrinking. His brain. These few words bring tears to my eyes. I could feel hopeful that it hasn’t shrunk anymore in the last year but according to the neurologist at the Mayo Clinic this is highly unlikely. We were under the impression that around age 5 the cerebellum was done shrinking, but he informed us that’s because there’s nothing left. Oh. All of this time I was still hopeful that it would stop shrinking and there could possibly be something left. Not the case. There could be nothing left. I have to believe that this isn’t absolute. Research is limited and CDG is rare and very diverse.

I asked his neurologist if we needed to have an appointment after the MRI and she said “not unless you want to.” She looked at me and said “the MRI won’t change a thing.” Easy for her to say, but she’s right. It won’t change his treatment. He will still have therapy 3-4 times a week. He will still be monitored by all of his specialists. We will still work hard every day to get him to say “mmm,” nod his head, sit up, taste food, or reach for an object of his choice. We will still push on with fierce determination. Most of all we will continue to love him beyond measure.

I know tomorrow I’ll still silently cry in my car on the way to his MRI. I know I’ll feel sick to my stomach until his neurologist calls me with the results. I know I’ll cry when she gives me the results. Good or bad. But I know I’ll still fight for my son no matter what. I will fight for him to move. To sit. To stand. To crawl. To walk. To speak. We will forever fight. So yes, I’ll still feel both sad and hopeful, but most of all I feel determined. Determined to fight for our son.

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(He can hold his head for brief moments in his Bumbo chair.)

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Tears

 

This Friday will be the one year anniversary of the scan that completely changed our lives, the MRI. One year ago we were told that our son’s cerebellum was shrinking. One year ago our son’s neurologist called me immediately after the procedure and asked “how much do you want to know?” The blood drained from my face and I wanted to throw up. No. No. No. Not our baby. I held him and sobbed. I can’t believe it’s been a year.

Over the last year I have shed buckets of tears. I’ve cried for so many different reasons. I’ve cried for our son and the struggles he will have throughout his whole life. I’ve cried for our other children because their lives are forever altered. I’ve cried every time I see a parent post in our CDG family network that their child earned their angel wings. Those days are extremely hard. I also mourn the loss of the child we thought we would have, over and over again. Whenever I see another 20 month old running around I think that could have been us. I have cried witnessing two siblings fight over a truck and think that’s not us. I’ve sobbed out of pure exhaustion. So many tears filled with worry, anxiety, and grief.

I’ve also cried because I’m incredibly blessed. I get to see the most magical smile. Every. Single. Day. Tears of joy when he held his head up for a few seconds. My eyes fill with tears when he can’t stop giggling; it’s the most amazing sound you will ever hear. More tears when he rolled over for the first time. Joyful tears when he looks up, touches my face, and gazes at me with so much true affection. Tears filled with so much joy, happiness, and love.

I know that the tears aren’t going to stop. There will definitely be more along the way. More for the life we wish he would have had and more for every milestone he reaches. Thinking back on the last year I wouldn’t change a thing. I wouldn’t take any of it back. The tears and all. We are who we are today because of every trial and challenge along the way. C1

 

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New year

The holidays are over and it’s a new year. I can’t believe that a year has gone by. Happy 2015 to everyone!

I have been staying home with our boys for nearly a year now and you’d think I would have more accomplished! I was laughing about this with one of our physical therapists at our recent appointment. My craft room is still a junk room, our crawl space is still the black hole for everything that is not currently being used, and yes, our elf garland has been up above our front door for an entire year. I had ideas of what my house (and I)  would look like when I stopped working outside of our home…and none of those visions have come true.  Everything was to have a place and I would be 10lbs lighter from all of the workouts I was able to get in. HA!! As I laughed about this with the therapist she reminded me of what we have accomplished.

Our youngest son is rolling over from his tummy to his back as well as from his back to his side. I recall a time when he would lay on his side and it would take all of his effort to kick back and roll to his back. My aunt was watching it with confusion while we were cheering loudly after he accomplished this feat. She said “wait, that’s what we’re cheering about?” Tiny things that parents of “typical” children take for granted. He has also gained tremendous head control. His therapist confided in me that there was a time when she was out of ideas to help strengthen his neck muscles. She was at a loss on how to get him stronger, and now she’s confident that someday he’ll crawl! At 18 months old he started lifting his head off of the floor while on his tummy. Actually lifting it. I get teary eyed just thinking of it. It’s a huge accomplishment for him. He’s also gained 10lbs, thanks to his feeding tube. I blame my gain on living in yoga pants that stretch right along with you….but his gain is actually something to celebrate.

My kitchen will always have a sink full of feeding extensions, syringes, bottles, and medicine cups. My craft room might stay a junk/craft room. The black hole will likely continue to be just that, but the elf garland might actually get taken down and added to it this year. I’ll stick to goals that are attainable. 😉 I received a gift certificate for 5 yoga classes so I know I’ll at least get to make use out of my ever stretching yoga pants five times in the next year.

I don’t know what the year has in store for our family, especially our little guy, but if he can continue to make accomplishments like he did in 2014 I’ll be extremely proud and incredibly happy. I may not have accomplished exactly what I thought I would get done in the last year, but in fact, we’ve accomplished much more than I could ever ask for.

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