What I used to know

I used to know Nicholas by his foot fall. The sound of his step was so distinctive. I could be downstairs and know for certain he was on the move above me. Truthfully with his shoes off I still do, but when they are on I can not tell the difference between him and Steven. It is so strange to me. I think he’s really hitting his stride with his ExoSym.

In another realm I used to know that Nicholas was my “special needs” kid or rather he was who made me a special needs mom, because I did not always feel comfortable characterizing him that way. Now that title belongs to Christopher. He’s got a few things going on or maybe one thing… joint laxity, low tone, some sensory issues etc. Etc. meaning other things mostly related to these things.

Chris is currently doing occupational therapy and speech therapy, he needs to start physical therapy again asap. He does speech in school but might need to do that outside school and does OT outside of school but will hopefully start that soon inside of school. He has a dermatology appointment this week for a bump on his foot that I can’t identify google doctoring. He has an eye appointment this week. He had a wonderful chiropractor visit a few weeks ago which left him feeling really, really good. Our chiropractor is also a doctor of functional medicine and amazing person. She suggested a diagnoses that might bring Christopher’s stuff together. I know the “why” is not what matters but the why can very much inform how we move forward! I have tired to just be the mom that goes to the appointments but I can’t. I am a researcher. I need all the information. I need to know, in as detailed a way as possible, how to help my son.

I have always known that Christopher is marvelous. He is beautiful and smart and sweet and funny, and for the most part has been able to do everything he wants to do, as he wants to do it. I know that is what matters. Since August though I began learning that I don’t know everything I need to about him.

Some of the things I used to know as his quirks have a biological basis and are impacting his learning and body. Maybe they will still end up being quirks and just how he is who he is, but there are things we can do to make some things that challenge him easier. OT, PT, more speech maybe…. so I will make sure he gets what he needs and we do what we can.

I used to know I was the mom of one special needs kid or more recently two. Now I kinda think I am the mom of four, in a way. Each of my children has needs. Each child has challenges I need to focus on in different ways at different times. My number one task is to love them and enjoy them and then to work, fight, research, and do everything I can to make sure they have what they need.

I used to know I was a kick ass fibular hemimelia mom, however I have realized that I am a kick ass mom period.

This does not mean I think I am a perfect mom or that I get everything right. I do not. There is no such thing as the perfect mom. No one gets it right all the time. I give my kids much more in being me and being human and humble.

Thoughts on special needs motherhood inspired by this link. 


3 thoughts on “What I used to know”

  1. Hi. My name is Lydia and I am twelve years old. I have fibular hemimelia and I had my first surgery when I was 4. My first lengthening was when I was 5. I had another one at age 10. Now I am scheduled for one more on May 1st. Each time I had to stay in the fixator for 8 months. I had to have physical therapy every day for that time (8 months) and I had to stay for 4 months in Florida with my mom, away from my twin sister, my dad, and my two brothers. I have had 11 surgeries so far, two of those lengthenings. Stay strong, and know that God is with us. My favorite bible verse is Philippians 4:13 I can do all things through Christ who strengthens me.


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