I am writing this to you as I lay upstairs with a mask on, quarantined away from my baby because I have simple cold. A simple cold that because of you, could be as serious as taking a life from a RCDP child.
From the first time I heard your name, I knew you weren’t good. I knew you were a bad thing. From day one I started my fight with you and I haven’t stopped and I certainly won’t.
You are an evil disease that likes to take away. You take big things and small things and I am tired of you getting away with it.
You take abilities from innocent loving children who are more than deserving of the things you viciously rip away.
I was harshly introduced to you on a day that should have been one of the best. I met you the day after my sweet baby was born and laying perfectly in my arms. You viciously came into my life and started ripping things away from us and from that day, I hated you.
It’s because of you that my Jude is going on two and yet he still can’t walk and play. It’s your fault that even though he looks at me and tries while his eyes are telling me he’s longing to, he can’t talk to me. Everyday when his unbearable GI pain consumes him and takes his breath away and I have to sit there holding him while he soaks me in tears and screams for help that I can’t give, I am cursing you. Every needle that pierces his skin, I hate you. Every therapy stretch that causes his pain, I hate you. Every surgery that he goes under, I hate you. Every MRI that tells us bad things, I hate you. Every X-Ray that reveals his deformities and shows us his discomfort, I hate you. Every mile we desperately travel to find help, I hate you. Every spinal tap, I hate you. Every seizure, I hate you. Every little tremor in his feet, I hate you. Every time I have to splint his contracted body and cause him pain, I hate you. Every failed swallow study that confirms he can’t eat normally, I hate you. Every aspiration, I hate you. Every feeding tube change, I hate you. Every time I click on his oxygen, I hate you. Every alarm of his monitor, I hate you. Every EEG, I hate you. Every sleep study, I hate you. Every long night spent crying by his hospital bedside, I hate you.
Somedays I fall in the trap, the trap of being bitter and mad. I just want to scream. This battle you have thrown upon us is hard and it’s devastating at times.
And then I look at Jude, the one who should be most effected by this and do you know what I see? I see love, joy, strength, peace, hope, victory and I see my Heavenly Father upon him. People often tell me how much of a warrior mom I am and that I fight so hard. But to be totally honest, he’s the toughest one.
Everyday I watch him push through pain and find victories. He’s a fighter and while it’s such an incredible thing to witness his bravery and strength, as a mama I don’t want him to have to fight such a harsh battle anymore. Jude is known as “The Brave Little Warrior” and he certainly lives up to that name. But I want my little warrior to be free from this.
There is now HOPE! In a clinical trial that is starting around the beginning of 2016. The FDA has approved a drug that researchers and doctors think could be a cure for a lot of their issues. Obviously it would not change their size but they do think it would change their lifespan and quality of life.
This is why I fight so hard. This is why I blast social media and blow up webpages trying to raise awareness. This is what we are fighting.
Even if you have nothing to donate towards the trial, you can still fight this with us. You can share about our Rhizo kids and you can stand in prayer with us! Please join our fight!