Plans change

As I lay in bed next to our 4 year old I feel myself wanting to hug him tighter and apologize. Some nights I look at his innocent face and tears well up in my eyes. This was not what we had planned for him.

The beauty is….he has no idea of the plans I made.  He doesn’t know that I envisioned him helping his little brother ride his old trike around the block on a warm sunny day. He has no idea that I had scrapbook paper for the classic photos of shared baths in a tub full of bubbles. He doesn’t have a clue that I could hear their squeals of laughter and loud footsteps as they chased each other around the house. He doesn’t realize that I had their sibling relationship mapped out in my head before he even knew he was going to be a big brother.

Plans change. He helps his baby brother grab toys and stands next to him when he’s working hard in his stander. He’s part of the cheering squad during therapy. Throughout bath time he sits next to the tub with me to help “make him happy.” He can light up his baby brother’s face by kissing his neck and playing peek-a-boo with his beloved monkey. When his baby brother is crying and I’m whispering it’s okay, mommy’s here, he looks into his eyes and says “I’m here, baby brother, I’m here.”

He loves his baby brother so very much, and he doesn’t know about the plans I made. He will never know, and to be honest, I don’t think he cares. He loves his brother for who he is, not for who he isn’t. He loves him for what he does, not for what he doesn’t do. He thinks his brother is special but not for the reasons others know he’s special. He’s his big brother and that’s reason enough.

My plans changed and that’s ok. I’m still learning to let go of the relationship I thought they would have, but embracing their blossoming one is incredibly easy.

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Unspoken vows

I have been told some of the most flattering, uplifting, and kind compliments over the last year. Many people have told me what a wonderful mother I am or that my son is extremely lucky to have me as his mommy. These words are very encouraging and I tuck them away for the days when I’m not feeling so awesome. Yes, I’m thankful and flattered but I’m also confused.

Confused? You may be wondering why?

I’m confused because I feel that I’m not being any more special or fabulous than you. I’m just being his mom. You see, when I first laid eyes on my boys I gave them my unspoken vows.

I vowed to love them beyond measure. I vowed to keep them healthy and safe to the very best of my ability. I promised to hold them as they were crying and I even assured them I would put band-aids on skinned knees…even when there really isn’t a reason for a band-aid. I promised to read bed-time stories and take long bike rides; I promised to hug and kiss them all my days.

I will never forget the neurologist appointment that changed our lives. I held my son and looked in his eyes and I made hundreds of promises to him. I held him tight and placed countless kisses upon his forehead. Each kiss a new promise. I promised to fight for him. I pledged to be his voice. I promised to help him achieve every milestone possible, no matter what. Gazing into his eyes I made an oath to be the very best mommy.

So, he may be lucky. I don’t know? I’d like to think that every parent would do the very same. All I know is come hell or high water, I made commitments to him. Every morning, I renew these vows to him. Every sleepless night. Numerous drives to therapy. Immeasurable number of kisses. Endless appointments. Each tear. I pledge to fight and never give up. I’m not backing down.

No way. Not ever.

Currently there is a gofundme campaign to help bring our son to Intensive Therapy to help him reach his milestones. Please go to this link and help us share our campaign!

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Feelings

”So very sorry for your loss.”

Are these words enough to say to someone who just lost their child? This morning as I looked at my Facebook feed I saw that another CDG child earned his angel wings. Tears welled up in my eyes and I wanted to slam the cupboard door. I looked at his photo and imagined the love his family has for him. I envisioned the kisses that were placed on his 2 year old chubby cheeks and the warm tears that fell over him. I cannot imagine the empty space he will leave behind.

It’s simply not fair. We’ve had our diagnosis a year now and every time a child earns their wings I can’t help but cry. I put myself in their mother’s shoes and I sob. Then I feel something that I feel a bit guilty about. Relief. Relief that our little guy is here and getting stronger. I compare their symptoms to our symptoms. I compare their subtype to ours. Finding differences brings me relief. These feelings don’t discount how my heart aches; the feelings of relief lie just under my feeling of sadness.

I hope these feelings are normal. I think they are. I’m sure that underneath the half smiles people give me when they see my son in his adapted stroller with his wandering eyes is relief. Relief that their children are healthy. Relief that their son doesn’t have to attend therapy three times a week to learn to sit up. Relief that a common illness is just chicken noodle soup and rest, not monitoring a fever above 100 degrees and praying that he doesn’t have a febrile seizure. Or maybe the half smile is all about his hair, who knows. 😉

I do know that CDG is scary. My feelings of heartache and relief will likely surface over and over in our son’s life, but the feelings of joy and pride will too. Days like today are hard, but absolutely nothing can compare to the moments of happiness.

February 28 is Rare Disease Day. To spread awareness and honor those who have earned their wings please consider going to this link to see how you can get involved!

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Big gains

“Don’t say small gain. No matter how small, it’s a gain.”

Leaving our Pediatric Rehabilitation Medicine Specialist these are the words she said to me. It’s true. Nothing is ever trivial with our son. Every ounce of progress he makes is huge. There is no such thing as a small achievement with him. We cheer, we clap, we burst with pride.

I am the lunatic mom that shares a video of him chewing on a Slim Jim or a video of him attempting to prop sit for a few seconds alone. I share videos of feats that are seemingly small to the outsider. If anyone ran across my videos and didn’t know our son they most definitely think I am one of those moms. A crazy, overbearing mother who thinks their child is the best at mouthing Slim Jims. 😉

I can’t help it. I have a serious problem with pride. I am so proud of everything he accomplishes that I’m compelled to share it. Not only am I proud I also want everyone to understand. I want people to understand what it’s like to have to work for everything. I want people to see the determination and motivation he has. Not only will we never give up; neither will he. Every. Single. Day. He works.

Last Friday grandma brought him to therapy and I gave her one instruction; don’t pick him up when he cries. It’s inevitable. He’ll cry. He’ll arch his back and get big crocodile tears. (Send me to the gym and tell me to do fifty squats and I’ll probably cry too.) Day after day, he works. He doesn’t give up. We won’t either. We’ll celebrate every gain no matter how big or small.

Please see this link to help us get our little boy to Intensive Therapy. He has an opportunity to make more gains. Big gains. Small gains. Any way you look at it, it’s a win.

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