Being Home

Getting to come home from the hospital…I was excited and happy. Finally I would have both of my kids under the same roof. Finally Brody would get to use his bedroom. Finally no more hospital. But at the same time, it was stressful as well. No more nurses to help with anything. I was going to be starting up my final plus 30 classes at IUS in 2 weeks and then about 3 weeks after that back to work. Chuck was working nights so I literally didn’t seem him except on the weekends which meant I had to get someone else to help me with the bandage changes, which we were doing every day for the first several weeks after coming home. Developing a routine at the hospital was so easy…no so much once we got home.

I’m not going to lie…Brody was difficult when he was a little baby. It was so hard to find how to comfort him and keep him calm. He cried a lot and did not sleep well for probably the first couple of months we were home, and he just really seemed miserable beyond words. And the spitting up….OH MY WORD! Thankfully, that started to easy up a couple of months ago and he really doesn’t do it much anymore <>. I felt like I was going to another doctor’s appointment every week and then the trips to Cincinnati started. From July to January, we probably made 9 or 10 separate trips, I think 3 of them being 2 day trips and at one point we had to come back 5 weeks in a row! This accounted for me missing all of my allotted days at work before the end of 2011 and has since had to take several days off without pay and will continue to do so until the end of the school year. Hopefully I won’t get fired for missing so many days. EEEK!

Adjusting to having two kids at home was hard enough, but learning to handle Brody and his needs and give Makenna the attention she needs and deserves, well, I’m still learning. And Makenna…what a great big sister and a great little girl. She has acted up on occasion outwardly to me and Chuck, striving for our attention. Once after a bandage change, we came out to chocolate milk powder all over the kitchen floor. But not once has she shone any ill will or resentment towards Brody. She loves him…and he adores her. He smiles at her every time he sees her. I asked her once if she’s always going to protect Brody, especially if people try to make fun of him. She told me yes and that she would beat them up if they tried to.  J

About a month after we came home, we started using different bandaging supplies, which allowed us to do bandages every other day instead of every day. That’s been a godsend because from the time I start getting his new bandages cut and laid out, to unwrapping him, to giving him a bath, to putting the new bandages back on, it takes anywhere from 2-3 hrs, usually closer to 3. I would say that right now bandage changes are more difficult than they ever have been. Brody fights us tooth and the nail the ENTIRE time. Many times all of the fighting causes new blisters to pop up before we are even finished. And boy is he strong. All three of us are just so exhausted after we are finished. I can’t wait for the day that he understands and realizes that if he just holds still and let’s us wrap him, we could be done in an hour or less and without us hurting him more.

Being a parent of a child with EB is most definitely challenging…but so is being the parent of Makenna (for those that know her personally, that’s self explanatory).  J I definitely have a different perspective on life…like I don’t complain about the “small” things quite so much. I do feel my patience with people is shorter than it used to be, but a lot of this is because I hear or see people complaining about those “small” things and it irritates me. I’m getting better at not worrying so much if things around the house go untouched for a day or two. And after 11 years of teaching, I’ve finally learned how to put my family first and my job 2^nd…don’t get me wrong…I still love teaching and put my heart and soul into it, now I put more heart and soul into my family than I did before.

I’ve had so many people tell me how strong of a person I am, how great of a mother I am, etc. I appreciate the compliments but I really do believe that anyone would do what I do for their children if they needed it. I don’t feel any more special than the next person really. It is hard, plain and simple. But to me there wasn’t an alternative. I’m Brody’s mom and he needed me. No one knows exactly what they are capable of doing or handling until they are put into a situation in which you are called upon to find out. People have told me, I don’t think I could do what you do…if it were your child, yes you could.