Hi, my name is Patricia, and I have
custody of my ten year old nephew.
Jonathan was born at 32 weeks with
the cord wrapped around his neck.
His mother (birth) was very young,
just 15, and didn't realize she had
given birth to a baby. She sat on
him for 15 mins before anyone found
Jonathan. He was pronounced dead at
the outside of the hospital but when
the CNA started taking the cord off
his neck, my baby came back. So you
see, Jonathan is a fighter! He had
a purpose to be here.
I have taken care of him since I was 16. I wouldn't trade it for anything in this world. When Jonathan born he spent a month in the NICU at Little Rock Children's Hospital. He came home and things where okay for a little but he had trouble sucking on his bottles and would get tired before he could drink a ounce. I took him in to the ER and he was in and out of the ER for the next 16 months of his life. Finally we got a g tube. It took so long because legally I couldn't say for them to do the feeding tube and my mom isn't for progressive care so it was a long and hard battle.
Finally I turned 18! Whew, it seems like it took forever but Little Rock was worried about Jonathan because I couldn't always get family to take us to appointments, so they called CPS and they came out and took Jonathan and gave him to my sister ( birth mom). It felt like my heart was torn out. Jonathan was almost 3 at this point and he had always had the same feeding routine. Well my sister showed up at my mom's house on the same night CPS took Jonathan. She literally gave him to her! I asked her where he was and she said "On the couch." No one was watching him and I went off. I told her all kinds of bad words. She left with Jonathan and something in my stomach didn't set right. We left maybe 15 mins after her.
Then we saw that she had put Jonathan in the road and was throwing his medical stuff and clothing out the house and this was 1:30-2 in the morning. On September 18, 2008, CPS gave me custody of Jonathan. Yay! In 2009, he got the flu and pneumonia and was placed in the ICU. During that stay we had some scary episodes where his heart would stop and then restart. The doctors told me Jonathan needed a pacemaker. I said okay and he went into surgery March 3, 2009, to get it. He did well! The next 6-8 months he was in and out with various colds or seizures, nothing too major.
Then on July 16, 2010, the doctor told me that he wanted to do an airway on Jonathan because he had a lot of issues. I agreed. When they where done with the surgery Jonathan wouldn't come off the vent so the doctors sat with me and told me that he needed a trach. On 7-17-10, Jonathan got his trach placed. I look at the trach like I do his feeding button. It's something he has to have and if it comes out I place it back in. I know that as a mom and new to the trach you are scared and don't know if you are making the right choice, but for Jonathan it made him a new kid. He didn't struggle; he didn't need oxygen all the time. Now with his trach has came new bacteria and sickness but I'd rather him be vented and so it isn't so dramatic and hard on him.
We where placed on hospice last summer and I am scared of that.. not because he has it but because now when he goes to our local ER they assume that they don't treat him. With us living 200 miles from Dallas Children's I panic, but Hospice does make our life easier. We are not admitted every few weeks. We can call them and have meds started.
Jonathan has a great personality. He is always smiling and full of life. I get asked all the time about how I think he feels. I think he shows how he feels by smiling. Children with special needs have a lot of personality. It's just a matter of getting to know them and bonding with them.
by Patricia Janeau, Jonathan's mommy
JourneyFEST @ 2013