The Special Mom

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…

I spoke at church this morning and shared a little bit of our journey. I was so nervous. I have been talking to myself every chance I get; while doing the laundry, dishes, and every car ride to and from therapy appointments. When our Pastor approached me and asked to share I was excited for the opportunity. I will never turn down a chance to talk about my boys, especially my little super hero. This morning as I was preparing I just kept praying that I would do our story justice and have the ability to articulate exactly how I feel. I know the diagnosis and steps leading up to…

At a recent speech therapy appointment our son’s therapist looked at me and said something I wasn’t prepared to hear. She said “I don’t think I can help him.” I was taken aback and was confused at what she was saying. Then she said I don’t want you to think I’m giving up. I didn’t know how to answer, I didn’t know how to tell her that yes I did believe she was giving up on my son. I wanted to say that she’s only had 5 sessions with him and how could she possibly know at that moment that she couldn’t help him. She said we could give it…

I missed a phone call today from our son’s ENT clinic. I figured it was a voice mail reminding us of an upcoming appointment, but realized it was something different when I saw the length of the message. I listened to the message and felt a sudden urge to cry. There aren’t many days when I forget that our life is glaringly different than I thought it would be. I have accepted that our life will present us with quite a few obstacles and challenges. There are difficult lows and tremendous highs. I don’t always know how to deal with what we are handed. I don’t always know the right…

I’ve been reminded this week about why I write. Reminded about why I’m so transparent about our journey and especially my feelings. I don’t write to get followers. I don’t write for more “likes” on my page. I don’t write for anyone to ever feel sorry for us and I definitely don’t write to get a pat on the back. One of the reasons I write is because I believe Christopher’s story should be told. I know I’m a bit biased but I believe he’s an extraordinary little human. He has overcome so much in his short life and I know he’ll continue to amaze us with his future. He’s…

I recently wrote an article that The Mighty published about being angry. I wrote real feelings on how occasionally parents of typical children upset me. I said that I was angry that other parents don’t have the same worries as me. I said that I know it’s irrational to be angry, but at that moment I was. I was upset that the heartache I endure is not one that most other parents have to live with. I’m jealous that what worries me is not what most moms worry about. I worry about a cold ending up in a hospital stay, I worry about organs failing, I worry about hitting milestones…

I had the opportunity this week to talk with quite a few medical professionals at a genetics conference. One of the conversations was with a nurse from Minnesota Department of Health regarding alternate medicine and therapies. She was saying how she is always hesitant to suggest alternate therapies and occasionally has a hard time supporting them. As I listened to her and another colleague discuss the issue I finally interjected and said that sometimes all we have as parents is hope. I continued to tell her that by her telling me that “studies show there’s no evidence to support that XYZ helps with ABC” only discourages me and deflates me…

We had a follow up appointment with our son’s neurologist this morning. I asked to take a look at his repeat MRI so I could see the cerebellar atrophy myself. The atrophy is quite rapid and there is about 1/4 of his cerebellum left. He also has some cerebrum atrophy; there’ s a black halo near the top of his skull where there should be gray matter but there isn’t. I surprised myself on the drive home. I didn’t cry. Those scans change nothing. They don’t change the course of action. They don’t change who he is. We walked into that appointment the same way we walked out. I spent…

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…

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…