Saturday, October 29, 2016
The sound of silence...
This is a very difficult post to write. But I am fairly certain that it will not likely be the most difficult one I ever write. I am trying to keep that in mind for perspective.
Now that the kids have arrived, and we have told them in person, we are ready to share the latest development with you all. We share it, not so that you will be sad or feel sorry for Rowan, rather, in the hopes that you will please keep him even closer to your thoughts and prayers in the coming days/weeks/months.
Rowan started showing signs of hearing loss a few days ago. It progressed rapidly, and at this time, he can no longer hear out of either his left or his right ear. It is heart wrenching to say the least. He is in the middle of the fight of his life as it is (undergoing his second consecutive bone marrow transplant), and to add this complication into the mix...has been so extremely difficult, both for Rowan, and for Brian and I. This weekend, Zoe and Ian will have to adjust to this as well.
There are three possible reasons that the doctors are considering regarding the hearing loss. Two of those would not be as likely to be reversible, but one of them is. That is the one we are praying for. Once we know more, we will discuss.
We have had to start using a white board to write Rowan short messages, in order to ask him questions like: "Are you in pain?", "Do you feel sick", "Is that better?", or to give him short messages like this one. He nods or shakes his head sometimes, other times he simply closes his eyes and a tear rolls down his cheek. He seems afraid to fall asleep, as if the only way he knows what is going on right now is to actually see it, since he can't hear it. Again, heart breaking.
We are trying to remain positive, and to smile at him and encourage him as much as possible. I wrote him this note (several times actually), and he does look at me and gently nods his head, as if to signify that he trusts me about it. I hope I am right. I hope they can. I hope he continues to believe it as well.
Our biggest prayer request for him right now is that he not be frightened by the silence. It must be so scary...to see so many pieces of equipment, so many lights, so many doctors, so many nurses, so much activity...yet hear nothing. I can only imagine what is running through his head.
Speech therapy also gave us this board for him to be able to point to what he wants or needs, if he is having trouble reaching out to us. So far, he has not been in a state to use it, but we think it will come in handy once he does. We are grateful for their immediate intervention and helpful ideas.
One last thing about this situation that I want to share...because it is just quintessential Rowan. He actually lied to me about his hearing a few days ago. He never lies. But in this situation, he lied because he was trying to protect me. He was trying to make Brian and I feel better. Such a completely selfless act of love from our little boy. I was trying to speak to him, and started realizing what was going on. I must have looked scared or nervous myself, and I believe (as much as I fought it) that I had tears forming in my eye as well. Rowan read my lips when I asked "Can you hear me?". He started repeating "I can hear you Mommy. I can hear you Mommy. I can hear you and Daddy, Mommy." However, he was not following my commands, he was not turning or even flinching towards Brian's voice, which was almost yelling, just behind his ear as Rowan focused on my face. We have tested him in many ways, in both ears, and at different times of day. He can not hear us right now. We are trying to comprehend that, and doing our best to communicate with each other in the mean time.
Please know, that we have NOT given up hope. One way or another, our family will deal with this setback. We are hopeful that it will be for the reason that can be resolved over time. If not, we will cross that bridge when we come to it, and it would not be the end of the world by any means. Our biggest concern right now is helping Rowan cope with it during this very critical, very specific, time of his life...transplant.
This is the verse I have been reciting over and over again the past few days. God can perform miracles...he can open Rowan's ears!
5 Many, Lord my God,
are the wonders you have done,
the things you planned for us.
None can compare with you;
were I to speak and tell of your deeds,
they would be too many to declare.
6 Sacrifice and offering you did not desire—
but my ears you have opened.