Misery Pain Faith and Love
It’s been three weeks since John-Michael was discharged from the hospital and we began this medicine called Achtar gel. Some things you may or may not want to know about this medicine are: This medicine is incredibly expensive; in our case it’s $20,000 per 5ml vile and John-Michael was given four of them! Secondly, it has plenty of potential side effects, as a matter of fact; our neurologist at Texas Children’s Hospital repeatedly has referred to this medicine as “poison” which I have to say has made me very unnerved on more than one occasion. These potential side effects are the reason he had to stay in the hospital.
The main side effect we’ve experienced is him being generally fussy and he can’t seem to sleep during the day, but we thank God that it hasn’t been something more serious. (We pray over him every day that God will minimize the unwanted effects of this drug and we believe God is answering our prayer).
The very first time I had to give John-Michael his injection was in the hospital; because of my vast experience in these matters I ended up sticking him four times with the needle just to give him the first shot. If you ask me, there are not many things harder in the world than having to do something to your own child that hurts them; and it really doesn’t matter if it’s “for their own good”.
[You can read about the hospital experience here: John-Michael’s Stay In Texas Children’s Hospital]
If you can stomach watching it, this is a video of us giving John-Michael his shot!
I may act tough while I’m giving him his shot or in talking to anyone about what we’re experiencing but I have to get this off my mind and writing is my healing process so, here it is; this is the reality of this experience. IT SUCKS! My emotions are all over the place! I’ve been angry, sad and heartbroken all because of this damned medication. I’ve agonized over having to give these shots to my son to the point of tears.
The truth is I hate medicine! I hate it to the point where I personally argue with my doctors over taking it for myself, because in my family we’ve been through the battle of prescription drug addiction. I’m certain of this; that “medicine” is the reason my mom died at 61 years old. I remember talking to my mom after taking her meds where I couldn’t understand a single word she said. Sadly, medicine and doctors who readily prescribe them scare me! It’s that simple.
Don’t misunderstand me, I’m not saying I would reject what the doctor’s at Texas Children’s are trying to do for my son by not giving him these shots or the other medicine they’ve prescribed to deal with these infantile spasms, because I wouldn’t! But I’m struggling with my own personal prejudices about medicine and trusting in them. Of course, having a doctor call the medicine you’re injecting into your son “poison” didn’t help my hang up either!
The bottom line is John-Michael was given to us the way he is and I don’t believe it was a mistake; I believe it was for a reason. I haven’t uncovered God’s plan in this yet, I’m sure that will come in time. But, what I can say unequivocally is that when I look into John-Michael’s eyes, I see someone who is beautiful! A boy who will never judge others, know hatred or be prejudice against anyone! All I see in him is love and it makes me want to love him even more than I think I already can.
Right now, we aren’t trusting the doctors or medical science; we are trusting God and believing He will lead us to the right people at the right time to help our son overcome whatever challenges he faces. Even though sometimes I question the what and the why or even the how, in the end, I go wherever I feel God leading us on this journey. I guess that’s what Faith is all about.
I’m just very glad to have friends like you who are willing to go on this journey with us.
On a side note” We’ve had some remarkable emails and comments about sharing our experiences and how it’s touched the lives of other people and I’m authentically humbled and amazed by them, so thank you for sharing John-Michael’s Journey with your friends! God Bless!