In January of 2012 I sat in the ER room, waiting for the doctor to come in to see my son, again, and tell me why his oxygen level was low enough that he needed an oxygen mask to breathe. I held my baby as he slept, looking down at his sweet 3 month old face and wondered what could be the possible cause. The tears wouldn’t stop and the ones I didn’t catch in time dropped on his hospital gown. The quiet tears turned to very deep sobs. I prayed to God that it wasn’t something permanent. “Please, God, PLEASE, whatever it is, don’t let it be something permanent!” I BEGGED. Just sitting there, rocking him, begging out loud, praying and sobbing, that whatever was causing the repeated ER visits and now the oxygen mask would be just a blip in his timeline.
But it wasn’t. First we discovered he had PCP which is a very serious pneumonia, very rarely seen in babies, more often seen in patients with compromised immune systems caused by HIV. But why did a little cold progress into such a serious illness? After a series of blood tests, X-rays, MRI’s, scopes and biopsies, Bruton’s was the reason. And it is very permanent.
Yesterday we go for a regular follow-up at the immunologist’s office and I leave there with the doctors concerned that he has a speech delay. He is 16 months old and does not say even one word. He makes “mama” and “dada” sounds but they are not directed at us. He doesn’t call us by our names. And he should be. I have a call in to early intervention for a speech evaluation but I am praying that it is nothing permanent. Again. I pray that it is just because his older sister is non-verbal so he is mimicking the only other kid that he’s really around right now and his words will soon be exploding from his mouth.
There are so many layers to this traumatic doctor’s visit. Going through yet another thing with my son; having two kids with special needs; looking forward to the Italy I missed out on with my first kid and landing in Holland again. I can’t even form coherent phrases to everything in my brain right now.
Please, please, please don’t let this be permanent.
I want to hear “mommy” from one of my babies.