Yes, I said it, I miss the hospital. Our first full week at home has proven to be a bit overwhelming. Brinkley had several appointments and I attempted to go back to work. I quickly realized the blessing of the hospital. It is exhausting, but while Brinkley was there I had very little stress. I didn't have to think about keeping up a house. I didn't have to think about balancing a schedule and I didn't have to worry about finding time for myself.
Brinkley had two doctor visits on Monday (one was unexpected) and another on Tuesday and Thursday. He had two the week before and has four more appointments scheduled for this month with the possibility of a fifth one. Trying to figure out how to fit all of this in and still be able to work is tricky. I don't know how other special needs families make this work, but I would gladly take suggestions. I can't imagine how anyone could work full time and keep up with all of this.
Since Reese joined our family in 2008 I have worked part time (sometimes up to three part time jobs at once to make ends meet). It is important to us to have as much time with our kids as possible, so we live in such a way that we can get by with me working part time. I enjoy working and it gives me an identity outside of being Mom. Don't get me wrong, being Mom is my favorite and most important job. Financially, it is necessary though. The fact that I had to take 12 weeks off could have been a financial disaster if we hadn't been blessed with an adoption tax credit that allowed us to pay off our debt just a couple of months before Brinkley was born. (With the exception of our mortgage. Dave Ramsey would be proud!) It's a good thing since we are already well over $500,000 in medical bills for Brinkley.
As if all the appointments and caring for a special needs child were not enough add the expense of caring for them and anyone would be stressed. It doesn't make it any easier when you rarely get a break from the madness. While we were in the hospital the medical staff would encourage us to get out of the hospital and take a break. It was nice to walk down to King St or to drive out to Mt Pleasant and have a little time to my self or with Bryan. We didn't have to worry about Brinkley because the nurses were taking care of him. Unfortunately, at home we don't have the luxury of trained medical professionals and their equipment on hand at all times.
Wednesday night we drove into Anderson and on the way home I went into Walmart for about 10 minutes to get a few things. When we got home I realized that those ten minutes were the only ones I had spent away from both of my children since we came home on January 1st. Thankfully, Bryan stayed home on Friday and watched the boys while I went to pick up birth certificates and met my sweet friend Anna for an afternoon free of children. What a blessing!
Brinkley has four more weeks on this formula that is reeking havoc on him. Once he is off of it we are hoping he will be able to take a bottle again and lose his G-tube. Once this happens and he is completely healed from his surgery we will be able to consider leaving him with other people. Until then he will be joining us for any dates we may be able to take. He's not a bad companion, but the fact that we are having to feed him every two and a half hours makes it hard to be gone for very long. (Taking his feeding pump everywhere is not always practical.)
So, yeah, I miss the hospital. I would never wish long term hospital stays on anyone, but want to encourage you to see the positive in it while you are there. Please don't feel sorry for me, that is not why I am sharing this. My hope is that by being honest some other family that is dealing with similar issues will see that they are not alone. Don't beat yourself up! Know that many have gone before you and are willing to be a shoulder to lean on or cry on if you will only reach out.
Earlier in the week Bryan called it "A Perfect Storm". That is so true, we are currently living in the middle of the perfect storm. The good thing about storms is that they pass. Maybe when this one passes it will leave me a secretary to keep up with this new crazy schedule of ours!