I am going to take a bit of break from updating on Michael for the weekend. He is in some what of a stable state at the moment. He has an awesome nurse that was with us all day yesterday and knows what to watch for. He continues to get his arrhythmia medication and he is still in a normal sinus rhythm. If he can make it through the weekend without any arrhythmia we are on the right path.
We talked to lots of doctors and nurses yesterday about his progress and how he is doing. Seeing him progress so slowly is not easy, especially after he was on a rocket to recovery last week. This week has been scary and full of emotional ups and downs. It is amazing how you go from being worried to content. Then you feel like giving up all hope. Then you feel frustrated and angry and you don't want anyone to comfort you. I am hoping one day the record of our experiences will help someone going through a similar situation. Because I have that thought in my mind I am trying to keep this blog as real and personal as I can. I don't know how people are supposed to react to things like this, it is a hard trial to endure.
I was talking to a social worker yesterday trying to explain my feelings through this whole thing. I feel guilty for not having any emotions. I feel guilty for being comfortably numb. I feel guilty for accepting the reality of the situation and losing hope. I feel guilty for having a smile on my face when things look bleak. It seems like any emotion you feel can be accompanied by guilt, and none of it makes any sense. Of course I am going to be frustrated and annoyed. Why not try to make the best of a bad situation? Sometimes it is ok to just be numb, no emotions can really help cope with the things that are going on in front of you, you just have to watch and absorb. This is a horrible roller coaster ride, and it's all in the dark. There is no way of telling what is coming up next, one minute you are terrified and the next you are so happy you could cry.
There is no doubt this is a rough ride for us as parents, but we also have to remember the rest of our family and friends. They are not only supporting us through this, but they are having to experience this second hand, without holding his little hands or adjusting his mask or singing him a song. I need to remind myself that this is not only extremely hard for us, but for everyone else that wants to love and care for this little soldier.
This is hard, the hardest thing I have ever done. I'm sure I am an emotional mess, but I'm trying as hard as I can to get through this with a positive outlook and a smile on my face. It is easy to push people away and not listen to what they want to say. For anyone reading this that has gone through something similar or is going through something similar. There may be a time when you get in arguments or fights with your friends or family. That will be accompanied by guilt and anger and sadness.. You will think "Why is this happening? Why in a time like this? Why won't they just shut up? Why can't I just accept this advice? Why am I fighting with a person that loves and cares about me?" I would like to think this is normal for most families. When everyone starts getting stressed out, things are bound to give a little. Just remember that person loves you and is trying to help the only way they know how. They have all the best intentions and are only trying to comfort you. You will be trying to deal with this the only way that you know how, and may not be ready to talk about certain things. Just remember everyone around you is a wreck, no one is on the outside looking in. You are all going through this together, and eventually you will make it through together.
This was more for me than anyone else following Michaels progress. This is an experience that is changing me forever. It is changing my family forever. I like to think that someday this entry will bring a sad and confused parent hope. I could not go through this without my beautiful wife, my wonderful family, and all of my amazing friends. Thank you for everything you have all done, I truly love and appreciate you all.
There's things the nurses do for him that I'm unaware of until we have a really good one that asks if I'd like to help. Of course I'd like to help! I'm his mother right? Since he's being fed through a tube his mouth gets really dry and the nurses swab his mouth with my milk. I've been sad for him that he can't eat, because I know that if he likes food as much as I do, than he's missing out. Knowing that he is still, in some way, getting to taste and have some milk, I'm sure he looks forward to it. I am able to give him a dose of oral medication, and change a diaper every once in a while. The fact that I get so excited to do these small things is an indication of how little I've been able to bond with my son.
Every opportunity I get, I take advantage of. I held him for the first time in a week. I haven't held him since last Sunday. Last week I was still able to pick him up whenever I wanted and feed him when he was giving me cues. When the nurse asked me if I wanted to hold him today, I didn't hesitate as I usually would. There are so many cords and tubes and IVs everywhere. The one that made me nervous is the scalp IV, but still, there was no hesitation. I scooped one hand under his neck and my other under his bum (as we've been instructed over and over again). I held him cuddled in the nook of my arm and gave him kisses on the little portion of his face that doesn't have mask on it. I am so blessed to able to look forward to and long for these little moments. The moments that I get to use those teeny tiny baby diapers and finally change MY baby. The moment that I know he's getting a taste of MY milk. The moment that I get to bathe MY baby. These moments that come naturally to most mothers with their babies and I get these special little moments with Michael. Because these moments are few and far between they remind me each time that this is my baby and one day I will be able to take him home and cuddle with him the way every mom gets to cuddle their babies. I can't wait. I Can - Not - Wait!!