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…

As a parent of a “failure to thrive” child, weight checks are not my favorite thing. The scale taunts me as if it is the measure of how successful I am at caring for my son. It reminds me of how far we have to go. It has the ability to completely crush me. A tiny scale has the possibility of sending me home from an appointment in tears.   At our last appointment the nurse asked if we could get a weight check as I wheeled him to the exam room. “Yes, as soon as I undress him” was my response. His pediatrician would like very accurate weight checks…

“God only gives you what you can handle.” People often say this when they don’t know what else to say. As a mom of a complex child this phrase has been uttered to me many times with a gentle smile. At first you want to believe that God hand-picked you for a rewarding task. God believes in ME more than he believes in you, which must be the case since you don’t have a medically fragile child. You were not chosen to live this life. This life of inescapable worry, beeping machines, and constant therapy. Tears in the car after an appointment, sobbing until snot runs down your face in…

Raising a child with special needs is a lot like being stuck in traffic. You’re driving along and then all of a sudden you see the brake lights illuminate on the cars in front of you. Then you slow to a stop. This is not what I planned for at all. I’m not prepared for this. I thought I did everything right and left the house with ample time but I guess not, and to be honest, I’m angry. I start to feel anxious and wonder when we’ll start moving again. I worry about being late to my destination. I try to look ahead to determine what the holdup is,…