High spirits

I met a woman today and after explaining what Christopher has and how congenital disorder of glycosylation (PMM2 CDG) affects his body she looked at me and said…

“well you sure are in high spirits.”

I was confused. I didn’t know exactly how to respond. I said something to the tune of I can’t change it and this is our life. But after thinking about it I wish I would have told her to look at him. Really look at him. Look past his head hanging a little lower than a typical 3 year old. Look past his medical stroller with his formula bag hanging on the handle. Look past your idea of what children are “supposed to be.” Look past his diagnosis.

Now that you’re doing that….take him in. Look at his eyes that light up when I say his name. Listen to his sweet giggle as his favorite part of Bubble Guppies plays on the iPad. Look at his gaze when he grabs my arm and looks to me for smile or a kiss. Listen to him say “do-it” over and over and then watch his pride as he blows raspberries until his shirt is soaking wet. Reach your hand out and hold his ever-trusting hand in yours. Feel his soft skin and resist the urge to kiss every inch of his face. And after doing all of that, how do you feel?

Are your spirits high?

I know that our life may not be like others. I know that our child comes with a long list of diagnoses, specialists, appointments, and unknowns. I am not sure what I am “supposed” to act like given this life. I am unsure what she expected my attitude to be. I am happy. I’m proud that he’s my son. I am joyful. Don’t get me wrong, there are moments of grief, anger, and sadness and there always will be. But our son is simply amazing. He has changed our lives forever. To say that he has opened my eyes to see what really matters in life is an understatement.

Next time someone makes a comment to me about my high spirits I will simply say look at him, how could I not be happy?

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Best things

We’ve all seen or heard the quote “the best things in life aren’t things.” The other day as Christopher sat in therapy for over 2 minutes using his arms for stability I nearly started crying. I thought about that quote as I smiled and hoped that we continue to experience a “non-thing” over and over again. After 2 years of constant therapy he was finally sitting for longer than a few seconds unassisted.

To describe my pride and joy is nearly impossible. I called my husband and immediately texted him the video. I posted it to Facebook. Twice. I wanted to tell every person at the grocery store and the Target employee that my son, who is nearly 3, is able to sit for a few minutes. I felt like I was glowing with excitement, sort of like when you get your engagement ring and can’t stop staring at it as it sparkles in the sun while driving. Then you go to Target to buy wedding magazines and just hope the cashier asks you about your engagement as she scans your purchases. You are bursting with excitement and want to share with everyone! I was so proud of him. Proud of us.

When I shared his video to Facebook my excitement was met with more cheers and joy from family and friends who are just as thrilled for him. People who follow his journey and did happy dances for us in their own homes. We received private messages of congratulations and “likes” and comments on his 2 minute video. I can only hope that everyone who watched our video felt the same as I did. “The best things in life aren’t things.” That video. That moment. 280 therapy appointments last year plus a 3 week intensive all led up to 2 minutes.

The best things in life are moments. The best things in life are 2 minute videos of your amazing little boy sitting.

The best things in life are you. This is a long hard journey and we couldn’t do it without you. Whether you silently read, openly comment, share, or don’t share. I appreciate you. I have always said that the more people who love your child the better. We appreciate you for loving our child and for celebrating our moments with us.

The best things in life truly are not things.

rare

 

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The “look”

Sometimes the tears come when I’m not expecting them. Sometimes I am not even close to tears and then all of a sudden the flood gates open.

Tonight as I was rocking Christopher to sleep it happened. I was happy. I was snuggling my boy close to me and kissing his sweet cheeks. As I held my almost three year old and listened to his lullaby music my eyes started to fill with tears. I didn’t mean for it to happen. I wasn’t even sad or thinking of anything in particular but as the tears started to flow my mind took me to places….took me to places I tried not to think about.

I recalled a phone conversation with my aunt talking about her granddaughter starting to clap and I tried not to think about the fact she’s years younger than him. I remember watching our son struggle to sit in a supported chair as his head bobbled back and forth. I think back to our morning as I watched kids run up the aisle at church as he sat next to me in his medical stroller. I remember his big brother asking me why his little brother is “staying a baby?” and telling me there is no way he is almost three since he doesn’t talk.

As my body started to heave with sobs something happened. My sweet little boy lifted his hand and touched my cheek. His soft little fingers started stroking my face and he lifted his head and gave me “the look.” His look that says everything all at one time. His look that says thank you, I love you, you’re enough, we’re okay, and don’t cry for me all in one glance. He dropped his head on my other shoulder and continued to hold my face as my tears rolled down my cheeks.

This. This is not what I pictured. Holding my baby boy, listening to the whirr of his feeding pump with his formula bag hanging from his crib, and going over the week ahead of appointments. Worry, frustration, grief, and more worry. But then I stopped. I stopped thinking and I just enjoyed. I felt his small, determined, courageous hand on my face as we rocked and I stopped. My body calmed down and I wiped the tears away and instead of recalling our day I envisioned his “look.” He has always known. He has always had the ability to stop me in my tracks and make sure I know…make sure I know we’re okay. He may be nonverbal but his look speaks volumes.

His innocent face that says it all.

You’re enough. I adore you. Thank you. Stop overthinking. Just enjoy. You’re okay. We’re okay…and yes, I love you too. 

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My super hero

To my little super hero,

I watch you every day try to reach goals that you don’t realize are set in place for you.

I see you struggle to do simple tasks and watch the frustration in your face as you’re unable to grasp a toy on the first reach.

I hold you exhausted after hours of therapy and kiss your sweet cheeks and tell you how proud I am of you.
Instead of a “soccer mom” I’ve become a “therapy mom.” Daily therapy appointments with your friends that even have they’re own song (written by yours truly) to prepare you each morning.

Multiple lab draws and specialist appointments keep your calendar full.

I’m exhausted every night as I tuck you in and I can only imagine what you’re body is feeling. Do your muscles ache? Do you have a headache from over stimulation? Are you pleased with another day conquered?

I drink in your smile every chance I get and am so grateful you’re mine.

You bring joy with you every where you go. Your giggle is irresistible, almost as remarkable as your hair.

You have been through so much in your few years of childhood with more mountains in front of you. There’s no stopping you. Your determination and courage are astounding.

As the anesthesia team was about to wheel you back for your 11th sedated procedure I looked at you and asked for a high five. You gave me your trademark grin, slowly reached to give a high five, and in your eyes you said “I got this mom.”

As the tears were about to flow the only thing running through my head was this…

You’re so brave and you don’t even know it.

Love,

Your mom in awe

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