Mo(u)rning
I woke up this morning, mourning.
Our son was crawling. It was Christmas morning and he started to get up on all fours and move. I grabbed my phone to record and remember thinking that no gift was ever going to compare to watching him crawl. I yelled to my husband to come quickly. Our son was grinning and trying to get away in his adorable red and green footie pajamas. He crawled over gifts with shiny bows and under the Christmas tree.
Then I opened my eyes.
It was just a dream. I got out of bed and went to his crib and saw his endearing smile. The tears started streaming down my face. I couldn’t control it. I was so happy to see his smile but my dream wouldn’t leave my mind. It felt so real, as many dreams do. I wanted it to be real so badly.
Tears wouldn’t stop as I thought of the dreams we had for him; the dreams we still have. Yes, we all have dreams for our children but it’s not the same when you know there are many that won’t come to fruition. My dream brought me tremendous joy but as soon as I opened my eyes there was heartache. A heartache that is nearly impossible to put into words. Every blink brought new hot tears down my cheeks. My chest was heavy and my throat felt constricted. I texted my girlfriends who I knew would understand. I didn’t want to be alone in my sadness.
The emotional day didn’t end. I checked our CDG family network and saw another child earned his angel wings. More sobs. I prayed for comfort to his family for their unimaginable pain they must be feeling. I felt guilty for my morning. Mourning over my son who is still here. Another mother said goodbye to her baby; his body couldn’t fight any longer. As I lay next to our little guy he grabbed my face and gave me his most charming grin. He blew spit bubbles and said “doo doo doo.” I know I’ve said it before but I think I will continue to mourn the child we planned; it will be difficult not to. But I also know that I will always celebrate the child we have. I will celebrate every accomplishment. I will celebrate every consonant, every vowel. I will celebrate every second of head holding, prop sitting, and weight bearing. I’m celebrating his little spit bubbles; I looked at him and said “you’re going to blow out birthday candles someday, I know it.”
I know that my dream is likely the first of many. I don’t know how I’ll react to the next one. Will I wake up with tears or with joy? Tears for what could have been or joy for what will be? No matter what it is I will believe he will.
He will. I know he will; and when he does I’ll be celebrating, even in the mo(u)rning.
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3 Comments
Brittany
This is written so beautifully. My daughter was diagnosed wit CDG 1C and she passed away in April of 2014 at 5 months old. I wrote a blog for about a year about our journey before Chloe, during hospitals and diagnosis and then surviving after losing her but it became too much for me and I gave it up for the time being. I plan to start it again one day to hopefully help grieving parents. It’s a heartache but also a joy for me to see other CDG parents write and put their stories out there for the world to see. Your son is absolutely beautiful and I wish you luck on your journey to blowing out those candles and other victories.
melissa
I remember praying for your family when you lost your sweet girl. The children who have earned their wings are never far from my mind.
Cindy
Beautifully written, as always Melissa! Cling to the hope that you have and let go of expectation – as stinging and impossible as that is to do. At 7 yrs old my son w/CDG 1a finally blew out his candles on his birthday cake. They were puffs of air accompanied with a lot of spit that landed all over the frosting. But you know what, it was the best cake I have ever tasted! Loves from you “CDG sister” in Virginia!