Dealing With Sadness

I have been struggling with depression since Noah was born. The NICU experience feels like a lifetime ago and it is something that I can't describe. Your whole life gets put on hold and the sadness and helplessness that you feel for your newborn baby is almost unbearable. Fast forward to now and we have this new diagnosis which has once again rocked our world. Before, I had hope that maybe Noah just needed a little bit of time to get stronger and work with his therapists. I even had visions of him running around and playing with Oliver. Learning about Noah's PMD has brought me into a more realistic world. A world where he will probably never walk and most likely won't ever talk. A world where I will be a caregiver for the rest of his life. 

Noah is also a little more complicated with his trach. Having a trach kid is isolating in itself. During the cold and flu season we are sequestered away and only venture out for doctors appointments... and even then he still gets sick. It is exhausting being on the phone for hours every week talking to person after person that has no idea what they're doing. Dealing with insurance is something I absolutely despise. Right now, as a matter of fact, insurance is trying to drop our nursing hours to only give us 14 hours per day. Crazy! I would obviously have to use those for night nursing so I would be home alone with a trach kid and a two-year-old all week long. I just don't even want to think about that. 

Anyway, back to the part about isolation... I have only had one friend come and visit me since Noah was born. I know I am a young mom but my "friends" still came around and at least met Oliver when he was born. I'm not sure if they just don't know how to talk to me anymore since we are basically on different planets now. They worry about graduating college and boyfriends while I worry about insurance and trach supplies on top of being a mother, wife, and house keeper. I'm not mad or even sad that those people aren't in my life anymore. They obviously didn't care that much to begin with if they can't even take the time to ask how I'm doing dealing with all of this. It's just hard having no friends. When I'm bored I call my mom to come hang out with me or walk over to my grandma's house. Not that I don't like spending time with my mom and grandma but it's just not the same as having a "girlfriend." 

Being the primary caregiver to a disabled child is definitely something you never think will happen to you. I remember seeing parents with a child in a wheelchair and thinking Gosh, that sucks and I'm so glad it's not me. I felt sorry for them. I'm here to say that yes, it does suck. But there is nothing to be sorry about. Feeling sorry for myself or my son has not made Noah any better so I certainly do not need other people doing the same. Just pray. And pray fiercely. Pray that his doctor's will give him the best treatment to make him comfortable. Pray that we get the equipment that we need to help him be happy. Pray that we make it through each day with smiles still on our faces. Just pray.