Jonah was born on 9 November 1998 at the Methodist Hospital in San Antonio, Texas. We did not know he was sick. I didn’t hear him cry in the delivery room. I was concerned, but they thought he just got too much of the epidural.
The doctors approached me later. They asked if I ever used drugs…of course, I was mortified. I told them, “Never.” They didn’t know why he wasn’t well. Jonah had trouble breathing, he could only grunt not cry, and he was very weak.
They didn’t know what was wrong with him until they did a muscle biopsy. He had Myotubular Myopathy. They told me he wasn’t going to live past a year. I told them to do all they could, and I would trust God with his life. They trached him. They gave him a g-tube. He began to thrive. He could now eat and breathe!
He has a sub-glottal blockage, so he can only breathe through his trach and he cannot speak, he is mute…but boy, can he use sign language. He talks more than I do! (He also makes clicking noises with his tongue).
Some nurses at the NICU were not very compassionate. They were quick to judge me and my husband. They didn’t understand how hard it was for us. This was our only child. They talked behind our backs. One nurse said that Jason would leave me. Another said that I wasn’t visiting at the NICU enough. Jonah was only there for 3 months.
I was trained by the nurses. (We had nice nurses towards the end of our stay!) We learned how to care for Jonah’s needs. God has blessed us. Jason and I are still married, going on 14 years! Jonah is thriving. He needs alot of care, but he is very happy! He has nursing care 98 hours a week, but we don’t use all of it. Jason and I go out on dates Saturday (yea!) and we come home with a little surprise for Jonah. Jonah has two wonderful nurses, Portia and Ray. (Jonah says he wants to marry Portia, but I told Jonah he needs to get a job first!)
We need to make sure his trach is clear and open since it is his only airway. Thank God, they are now able to clear a blockage with laser surgery if it appears! His doctor (ENT) checks him every 3 months to make sure his airway is open, and that there are no scar tissue to block his trach. Jonah is breathing very well…though trach changes can be scary.
Jonah’s mother Jennifer has kindly allowed the Information Point to publish three of her poems; ‘I Want Flowers‘ – written by Jennifer for her mother, who helps her care for Jonah and ‘Venus‘ – about Jonah’s excitement when he first saw the Planet Venus brighter than any star in the sky and ‘The Rose’.