7 Things I've Learned Since My Son's Tuba 1A Diagnosis


Freddie, our son, has recently turned 7 and I’ve been reflecting on what a journey it’s been. I’ve learned so much more than I could ever have anticipated during this all-consuming, heartbreaking, joyful, overwhelming and love-filled time. It’s been a journey like no other. Here are seven things I’ve learned since Freddie’s rare diagnosis:

1. I now have a wealth of knowledge. Considering I haven’t trained to be a doctor, I have been asked more than once if I have a medical background by the medical professional I am seeing. I know more medical terms and information than I ever thought possible without actually being a doctor. I know a fair bit about genetics now. It never occurred to me that someone might not have a diagnosis at all to explain their difficulties, or that after a number of years being undiagnosed, Freddie would receive a diagnosis of TUBA 1A — a condition so rare, I probably know about as much as the geneticists on the topic. It’s all very interesting, but I have to be honest: for the most part, I wish I didn’t know all of this.

2. How to communicate with family, friends, and strangers using compassion, rather than anger. This is in regards to our family’s situation, and in response to others’ often misguided or insensitive comments. This is a big one, not just for me, but for so many families I know living in the Special Educational Needs (SEN) world. I’ve come to the conclusion that most people are good and kind. Most people don’t mean to upset you when they stare at your child. They are often just interested, but can’t take their eyes away quick enough while their brain processes what they see. Many of the older generation don’t intentionally mean to use totally inappropriate language and labels. They use what they know from the era they grew up in. Most of the challenge here comes from a lack of education around these subjects. I see it as my “job” to educate everyone on Freddie’s needs, and this helps bring acceptance and inclusion rather than staring and fear.

3. Patience. For someone who is and always has been notoriously impatient, this has been a very steep learning curve for me. I’ve had to learn patience in abundance. I’ve still not totally mastered the art, but I’m better than I ever thought I would be. I’ve needed patience with myself, Freddie, life, the system, and so much more. It’s an ongoing practice which I try to master daily.

4. People are kinder than you think. Most people want to help in any little way possible. Often they don’t know what to say or what questions to ask. They feel silly and unsure of your reaction. That old saying “it takes a village to raise a child” is totally correct in my world. If you are feeling alone, vulnerable, and isolated then just those few simple words “please can you help me” often bring great reward. It takes courage to ask for help, I know. It might be for something small, but it could help you out more than you can imagine. Not everyone can help with everything, but some people can help with some things. Those people might be friends, family, or professionals. Give it a try.

5. You can meet some truly incredible people. This is certainly true for me. If I lived in “Plan A” and in a “mainstream” world only, there are so many inspirational and kind people who I wouldn’t have the pleasure of knowing. For this, I am grateful.

6. I am more powerful than I ever thought possible — and so are you. Eight years ago when looking into my future and the plans I had, I would never have believed how upside down my world would turn, or how powerful and empowered I would become. I have had to reach total rock bottom before coming up, and I still have those times when I feel broken, but mostly I am “up.” I would never have imagined advocating for another human being in the way I do for Freddie and the rest of my family. I would never have imagined I would set up a mentoring business to support other parents just like me. Building this tribe of empowered SEN parents is amazing and I love how far people can go with the right skills and mindset.

7. I have a love, a love like no other. All parents out there will confirm, I’m sure, that they would lay themselves down under a truck if it would save their child. They would do anything for them. This is absolutely the case for me. Even when they are “driving you up the wall” and back down again. As a SEN parent though, there is something even more primeval about it. I think it is because many of our SEN children can’t advocate for themselves, they are vulnerable and most will need support forever. The fear is real, and the desire to give my all to Freddie and help him achieve his absolute best is unmovable in me.

I love my husband and my three beautiful children more than anything. I’ve learned such a great amount in such a short length of time. I only hope I have the capacity to learn more as they grow (and finally work out how to do fractions, tricky math equations, and English homework).

the author's son sitting on a sofa, with his name "Freddie" above him

Image Credits: Aimee Mann

Find this story helpful? Share it with someone you care about.