Before Matthew and his twin sister Callia were born, I was here at the Children’s HOspital at least two times a month. One appointment at the beginning of the week was an ultrasound. Then the second appointment at the end of the week was an ultrasound and a doctor visit. And then there were days that I had to be there three or four times in the same week. We had to book a hotel room because the drive back and forth from home was just too draining. During my pregnancy we didn’t receive a whole lot of good news, so it was hard sometimes to even get out of bed.
Once Matthew was born, he was in the NICU for 5 months. 5 months= 28.6 weeks= 143 days. The NICU was all he knew. He didn’t know anything about our home. He didn’t know he had siblings, he didn’t know what it was like to be in his crib. He had no idea.
Once Matthew was home, the kidney clinic became a familiar place. He had doctors appointments and the peritoneal dialysis pediatric kidney clinic once a week. We made friends with the lady at the lab because matthew needed to get his blood drawn every single week. Turns out she herself was on dialysis too. She as well as all the other nurses have become like family to us. So familiar and so close and so caring.
Then Matthew kept getting sick. At least twice a month we were in the ER with him. And at least once a month he was placed in PICU for no less than 4 days each visit. The longest he was in PICU was 9 days.
I am just going to fast forward through the entire year to now. Now we are here in hemo-dialysis at the hospital 4 days a week, 8 hours a day. It is such a familiar place to him. He knows the days that he goes to dialysis. He says goodbye to his sisters when he leaves and hello when we return. He knows when I start packing up his bag, this is where we are going. He knows when we come for an xray, or ultrasound it isn’t a scary place. It is just something that we do. It is something so normal to get these done.
And when we walk into dialysis, he is so happy and is not afraid or sad that we are even here. I see big kids here from 8 to 18 every single day. They cry and whine and say that they are hurting. They complain because they get dizzy or hot or cold or feel like they are going to vomit. This hurts or that hurts….
And then there is Matthew. Just laying in his bed watching his favorite cartoon, Little Einstein’s, on the donated IPAD. He doesn’t cry or whine. He doesn’t fuss or whimper or complain. He just lays there with his blanky in his mouth and watches cartoons. He is still happy and content. He doesn’t get dizzy or feel like he wants to vomit. It is just a normal thing for him. He comes into dialysis, gets undressed, gets weighed, gets hooked up and watches cartoons a couple of hours. Then he gets disconnected, gets weighed and gets dressed. The only time he whines is when I have to take the IPAD away because it’s time to go home.
The hospital is all he knows. This is all he knows. He doesn’t know what its like to be at the park. He doesn’t know “normal” toddler life. He knows hospital life. I don’t know if it its good or bad that this is all he knows. I like to say that it is a blessing in disguise. Because he is so young, he is so unaware of everything that is actually happening. He doesn’t realize that this is life-threatening. He doesn’t realize that this is a deadly, incurable disease. He just knows its normal to be hooked up to a machine every other day.
I wonder if he were older he would be crying and whining and complaining like those older kids. I wonder at what age will he be aware of all of this. I wonder what he will do or think when he finally realizes what is going on with his sick body. I wonder if he will ever NOT know the hospital and I can’t help but wonder what “normal” life with a son would be….