One thing I rarely talk about is my anger. I was talking to a friend the other day about how it’s okay to stop for a second and not say what a blessing this life is. It’s okay to say that it sucks. Really really sucks.

I love our son with special needs with all my heart. I love every single hair on his beautiful head. I love his grin and I could bottle his little giggle and keep it forever. I love him, but there are many days when I don’t love the journey. The journey of anger, jealousy, sadness, and heartache.

I’m angry that last week I cried mourning the loss of a child affected by CDG. I’m angry that it could be my child. I’m angry that I silently listen to other people’s conversations about mascara and the newest butt burning workouts while my heart is breaking inside. I’m angry that a mother I met a few weeks ago is holding her 6 year old with terminal brain cancer and she’s telling her it’s okay to go. This life is not for the faint of heart. This life is not easy.

I’m angry that I did everything “right.” I didn’t do anything to jeopardize my pregnancy or the health of my child and I still ended up with a child who has nearly everything wrong in his body. I ate spinach salads, never had a sip of alcohol, and held my breath near cigarette smoke. I took extreme care of my little guy while pregnant but yet somehow mothers who abuse drugs and alcohol can have a healthy child. This life is not fair.

I’m angry that I just can’t relate to other moms. My perspective is so very different. My priorities are not the same. I’m busy trying to get my two and a half year old to sit on his own and clap his hands together. I’m busy keeping my child alive. This life is lonely.

I’m angry that this is not an acute episode. This is not something that will ever go away. We will be fighting for our child his entire life, even into adulthood. We will fight for him to have abilities that come naturally to most children. We will fight to keep him healthy. There will be fights with education regarding what we feel is best for him, and fights with insurance to cover equipment or services. This life is forever.

I’m human. So, yes, some days it’s hard to embrace the life we’ve been given and look on the bright side. There are definitely dark days, but I know we’ve been handed this journey for a reason. One thing I know for sure is that we can do it. We will never give up and we’ll kick ass and take names along the way.


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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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