“Getting Better” – Amy

Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that an honest account of these emotions could be cathartic. I have gone from feeling sorry for myself, to feeling numb, to feeling a bunch of different emotions – some rational and others not so much. Ben was just diagnosed in January, so many of these emotions are quite raw. I thought perhaps others could relate to this daily struggle that I’m still trying to master – keeping the darkness at bay and clinging to the light. The following are some regular visitors in my daily assortment of emotional lows and highs.

Here’s the dark stuff:

I grieve deeply.
I want desperately for my son to grow up normal, be best friends with his brother, be independent, get married, have children, have a successful career, and on and on. The vision I had in my mind when I dreamed of having a family is broken. Our reality will always be different, and I grieve those hopes and dreams that I’ve had for as long as I can remember.

I feel helpless.
There are times when I can get pretty depressed. It happens when I see another child Ben’s age and it’s so visible how different they are. It happens at preschool, when Ben is the only child not speaking or participating the way the other kids are. It happens every time an evaluation of Ben occurs and it shows how behind he is developmentally. These times make me feel helpless, because I can’t change anything.

I am really, really scared.
Every day I feel like I’m keeping it together by a thread. The future is so cloudy, and I can’t see what’s ahead. How will Ben be treated by others as he gets older? How will he do in school? How will his brother deal with this as he gets older? What will people think of me? Will they judge him unfairly and how will I stand up to that? Am I capable of the strength that is required to carry on? My heart says I can do this, but the fear is always there.

I am sometimes jealous.
This one is hard to admit, but it happens. I envy those that have treatment available to them. I am jealous of friends with normal children, because I so desperately want our family to be just like theirs. I am especially envious of those with kids that speak, even other special needs kids. (Oh, how I desperately want to hear Ben say “mommy” and “I love you.” That makes me want to cry now just writing about it.) These selfish feelings make me feel shameful and disgusted.

I feel inadequate.
So often I feel like I don’t do enough or have the time to do what Ben truly needs to help him progress. I work full time, and I need to meet the demands of Ben’s therapy and school schedules as well as the needs and demands of my older son. It’s a lot to deal with daily. There are so many things I think I could do for Ben if I was able to be home with him, but I can’t. I hate feeling like I’m letting him down every day, and I appreciate people telling me otherwise. The reality is that he needs and deserves more from me, and I can only do so much. I feel like I’m not the mother I should be.

And here’s the light:

I have immense hope.
The future has a lot of promise and hope. I have a loving, supportive family to come home to every day. I have a stable job that I enjoy. Ben has access to the services and support he needs. He is surrounded by people he loves and who love him. We have a diagnosis and can do things to help Ben. Maybe someday there will even be a treatment for CTD. There are so many possibilities and I am hopeful for what’s to come.

I am so proud.
Ben has made so much progress developing and growing, and it’s very encouraging. Most of it is slow, some less so. While I know he will never be like other kids his age, he is still moving forward and every little milestone means so much. Everyone involved in his care is so pleased and impressed with him, and makes a point to tell me so. Many others love him like I do and are very invested in his future. That makes me so extremely proud of my strong little boy.

I am focused and determined.
Now that I know Ben has CTD, I feel like I have more information and focus than I did before. I also feel like I’m in a better position to advocate for him. Since his diagnosis, I’ve decided that I want to raise awareness and create change for special needs kids like Ben. I’m already trying to do that in the small ways that I can. I feel determined to make a difference for my family and others in similar situations.

I am grateful.
We are so fortunate that our family is not alone in this. Someone came before us and did the hard work so we could easily find out information and connect with other families like us. The result is a community of others like us that we can turn to for support, and doctors, researchers, and organizations that care about creatine deficiencies. So many are trying to make a difference. For this, I am extremely grateful, more than words could possibly express.

I love completely.
My life is full of love. My family means the world to me and I would do anything for them. If you met Ben, you would love him, too. He is so sweet, happy, easy going, and full of joy. He truly lives in the moment. If I have a bad day, all I have to do is find Ben, see his smile, and I’m instantly happy. It’s such an honor to be his mom. He is the greatest gift, and I am very lucky to have him. He is truly the light that drives all the darkness away.

While I have so many emotions associated with Ben’s diagnosis, overall I am an optimistic person and always have been. The good emotions do outweigh the bad, but the bad ones can easily surface. Managing them is the key, and I think I do a pretty good job even though there are times when it is so challenging and exhausting. This journey is hard, but it’s not without lots of love and light to help quell the darkness. I think it’s getting better all the time.