A Letter to Myself as I Parent a Child With a Disability
I recently read, “To Myself Before My Daughter Was Diagnosed With Cerebral Palsy” by Christina Smallwood. I learned a lot from that letter. One of the things that really stuck out to me was when she said, “Her progress doesn’t solely rely on you; she will go at her own pace. Follow her lead and be strong for her.”
I cannot tell you how many times a day I see Bren’s lack of progress as a failure on my part. Because here’s the thing, I am with him almost 24/7. I am taking him to this therapy and that therapy, this doctor’s appointment and that one. It’s easy for others to tell me that it’s not my fault and Bren will do what he can when he can and it’s so true. He will and just because he doesn’t do something we have been working all day on, it does not mean I failed.
I love letters. I love getting things that are thought out and filled with so much love. Words of affirmation are my thing. I love to give them and receive them. So, I decided to write myself a letter. A letter to myself before Bren’s birth. A letter I wish I would have had. A letter that I hope helps someone else.
You have no idea what is about to hit you. You are about to walk the hardest road of your life. You are about to enter into a world that you have only been slightly exposed to. You’ve been exposed as a social worker, teacher and friend. But you’re about to be exposed as a parent.
You are about to enter into the world of parenting kids with disabilities. A world where you will cry yourself to sleep more times than you can count. A world where you are angry, frustrated, sad, annoyed, confused, overjoyed, content, excited, and OK all at the same time. A world where you face more emotions than you knew were out there. A world where you will become so used to waiting in waiting rooms and even your car. A world where doctors, therapists, specialists and clinic staff become your friends because you spend so much time with them. A world where appointments abound.
You are about to enter a world full of joy; more joy than you can imagine. You are about to enter into a world where you celebrate every milestone more than you celebrate a Packer victory. A world where you tell all of your friends the miracle of the day.
You will find a miracle every day. Some days you will have to search harder than others. Some days there will be so many miracles that you are constantly texting your friends about them. Just remember that he will make progress when he is ready, and on the days he doesn’t make progress (yes, those days will happen), it is not a failure on your part. It’s easier to say that than to believe it, but do yourself a favor and start believing it now.
You will have hard days. Oh so many hard days. Doctors will make you angry. Therapist will tell you everything you are not doing and nothing about what you are doing well. You will spend more time in the car and at the Children’s Hospital than you do at home. You will be tired and exhausted, not from a lack of sleep, but from having to think and care about so many things at one time. You will learn to become extroverted and that may take a toll on you. On these days, lean on those friends that have surrounded you (spoiler alert: you’re about to find some really good ones). Tell them how you are doing. Tell them how they can help. Cry with them. Even let them hug you — it feels good, I promise.
You will have wonderful days. Bren will do miracle after miracle. Bren will have accomplished some new task. A specialist will tell you, “You are doing a great job.” A friend will volunteer to watch Bren so you can have a much needed break.
There will be days where life feels “normal.” Embrace those days. Hold tight to those days. Lean on those friends during those days, too. They mean it when they say they want to walk this journey with you. Let them.
At the end of the day, you are one amazing mama. You changed your plans and dreams for this beautiful boy. You are doing everything right; keep at it. Praise God for the mountains He is moving and the path He is paving for Bren. Praise God for those friends that surround you for the journey.
You are OK. You are more than OK.
A version of this story originally appeared on New Normals and a Crazy Awesome God.