I am starting to let go, slowly let go after a very long winter. A winter where I never knew what days we would spend at Children’s hospital, and what days we would spend at home. A winter where we decided to isolate Jacob from germs as much as it’s humanly possible – no school, no play dates, no gatherings with friends outside or inside our house, no hanging with neighbors outside. Doctor’s visits were excluded. It was hard. Some days were really hard. There were evenings where I simply had to leave the house after a full day of diarrhea, suctioning, and seizure management. The constant debate in my head, if I should bring Jacob in or not due to his skin color changing, his breathing being obstructive, new seizures, and other little surprises along our way. Looking back, I know I put my mental strength to the test this winter, not only once, many more times than I thought was possible. And I would do it all over again. The simple reason is that it worked!
We have a different Jacob today than before his status epilepticus in November, no doubt. But we have a Jacob with us who has not had pneumonia for 3 months. A Jacob who needs help to keep his lungs clear, but is not constantly needing deep suctioning. A Jacob who still has seizures, but it’s better controlled than I never thought was possible as we were living in the ICU by the end of last year.
I have learned the hard way that no one knows what the future brings, no one. And that gives me hope. Gives me hope for the spring and the upcoming summer. I know Jacob can get really sick any day, but for now I am going to count the good days, the good moments. And we have been living on the good side for the last month. Jacob has passed the month mark being out of the hospital! What does a month mean to you? For us, it’s a really, really good place to be.
This past week as Jacob has had a good week with different therapies, nurses who truly work out for us, walks outside, play in the backyard - it really hurts me that one of our little kiddos is camping out on the 8th floor at Children’s Hospital tonight. Just thinking about all the feelings going through your mind and body as your child is sick is overwhelming and very scary. It was a first for me to pack a goody bag to a friend, and actually go to Children’s Hospital to visit another child than Jacob, and without bringing him for a doctor’s appointment. I have visited kids in the hospital, but I am always already there… It was weird to visit in a room that we have stayed in many times, but knowing that you will leave and sleep in your own bed that night. Knowing that you simply visit the world that is so familiar to all of us. At the same time, it feels so good to be able to give back. To do something for one of our kiddos that we do anything for. A kiddo that also needs to go home and enjoy spring! To our brave, little Samanta.