No one can tell you what you can or can’t do. No one can tell you what lies in store for you in the future. You can’t always believe doctors because they have to say that which will ensure they don’t get sued. They don’t want to create “false hope”.
And they don’t know you like you know yourself. They have no idea how strong your willpower, determination, and perseverance are. If you are determined to heal, your willpower will kick into overdrive as you seek to find the answers you need. It takes great perseverance to reach the finish line of such a puzzle, but it does exist – a cure exists. It’s only a matter of time before we unveil it from the shadows of the unknown.
The Emotional Power Doctors Hold
Sometimes doctors’ comments can incite anger, sadness, frustration, depression… And that’s what happened to me for nearly two years. I almost thought that you would be in a wheelchair your whole life and there was nothing I could do about it because doctors also told me what you have is so incredibly rare (CMT type 2C) that it would be highly unlikely doctors/scientists would pursue its cure any time soon.
I even had a physical therapist try to explain to me that a wheelchair isn’t that bad (you were only a month old). I disliked her immensely and nearly got a different physical therapist for you. I’ve met better therapists since her and no longer see her.
Thinking of that therapist… And the doctors that didn’t believe you’d ever reach certain milestones or see a cure…
Look at you now. Walking, albeit with braces, but you can get up on your feet. I’ve talked to two doctors that are working on a treatment for the exact TRPV4 mutation you have. Their treatment not only stopped progression in animal subjects, it also improved their nerve function leading to muscle growth!
No one can steal your hope. No one can steal your future. Keep believing. Keep working towards your goals. No one can stop you. Only you can do that – by believing in farce negative nonsense.
Keep your mind positive, because there is an answer to every puzzle.
✨January 7, 2016✨
You’re growing rapidly now! Your brain is getting bigger, more wrinkly, and your intelligence is beginning to blossom. Room is running low! I thank you, my little froglet – because of you, your father and I are finally getting our lives together. When you arrive, it will be the start of a whole new chapter for all of us. I’m so happy and excited! A bit scared, but that’s okay. My strength will prevail. I am seeing the doctor in five days and hope she’ll tell me if you’re a boy or a girl. Whatever you are, please be healthy. That’s all I want and need right now. Your health. I love you.
I am so grateful you turned out to be healthy in the ways that truly matter. A little leg and ankle weakness is something I can manage and you’ve already proven that you can too. Always be grateful that your organs and senses work well.
The doctor I mention took an ultrasound of you and said you were breech. He suggested I see a diff doc to take a better ultrasound. The OB-GYN kept a secret from me. That story is in the next post.
As you were getting bigger inside me I would research each stage of your growth. After you were born, I felt great sadness every time I would think of growing milestones. All the milestones related to walking wouldn’t be reached on time with you… And in the beginning, we were told you may never walk.
I no longer carry this sadness. Your perseverance, determination, and willpower are far stronger than I anticipated. You can walk with braces and I notice improvements nearly everyday. Let’s focus on being 1% better than yesterday.