So I wrote this post for a different site...I really should keep this post to myself, but it the tradition of using this blog as my "journal" I am going to post my hateful thoughts here too. Don't really want any comments on this post...just how I feel at the moment...I really have an overwhelming urge to do yard work...maybe that is what my depression needs is a sun burn and sweat :-) As you can guess this is not a happy an chipper posting as I had last promised...I think I need another trip to "the happiest place on earth."
I have been pretty depressed for the last 2 months. In serious need of some new "happy meds." Logan's Angelversery has come and gone and Jacob has been in and out of the hospital. I used to be part of these Twin to Twin Transfusion support groups. They are full of new moms with new losses and moms that are still pregnant with babies fighting to live. I torchered my self for weeks reading all their sad stories and looking at pictures of tiny babies born to early to even have a chance to live. Reading all their feelings of raw anger and grief broke my heart and started making me feel sorry for myself. I was very fortunate that at least I did have time with my baby. I had over 6 months with him. Any ways, these moms were in all different stages of grief. I eventually deleted myself from these groups because I don't feel like they were making me feel any better, but destroying me emotionally...my fortress that I have built nice and tall around me started to crumble. Maybe it needs to, but I am not ready for that. I handled 6 1/2 months of NICU visits 1 hr each way, I handled the ups and downs of my son's health in the hospital. I prepared myself for "the worse case scenario." I handled his death. I actually felt like I needed to be in control when that day came. I even took the tube off his trach that connected him to the ventilator. I don't know why I felt that I had to do that, but at the time I did. I handled Jacob's brain damage. I handled the devastating diagnoses and poor prognoses of the type of CP he has. Well, I guess I am not handling that one well. I am dealing with it, but I hate it. I resent it with every ounce of my soul. I HATE THAT MY SON HAS BRAIN DAMAGE! Now, I am not handling that my son has died and he is never coming back. No I am not handling this well anymore.
Jacob's CP makes me very sad and because of this it leads me to day dreaming about all the what ifs and what could have been. It has made me mourn things about Logan that I did not even realize I was missing.
Jacob does nothing. He used to eat by mouth, he used to hold things in his hands, he even used to take steps in a walker, but I believe it was all baby reflexes that have went away. He has been sick almost every month since September of 2009. It is really wearing on me now. He has not ate by mouth in 4 months. He won't suck or swallow. At this point I am not sure he will ever eat by mouth again. He vomits daily sometimes more than 5 times a day. In the last year I can only think of a total of 4 weeks where he was not congested, coughing, or vomiting. They tried to tell me it was because he was aspirating when he ate by mouth, well he still does it and he has not had a drop in his mouth in 4 months. Now I couldn't feed him by mouth it I had too. He used to pull his chest off the ground and he has rolled over what seemed purposeful 15 time since November. He has not rolled since early January. Everything he does stop as soon as he gets REALLY sick. Then it is like he forgets how to do everything and we start at square 1. Lets try and hold our head up today Jacob.
Waking up super early, people coming into my home, every day and hours upon hours of therapy every week and I feel like we have made little to no gain. He is apparently legally blind and very farsighted. We get glasses. I see no improvements. I know he sees light...that is the ONLY thing he will track. The rest of the time he looks around in his own little world and seems like he just stares right through you. He can hear. Most of his days are spent moving from 1 contraption to another that the therapist has brought to "help" and he just listens to the world around him. He laughs when my other 2 children cry...if their is a really loud repetitive noise like an alarm clock he kicks his feet and squirms in delight. He gazes at the TV, drools on himself, and just listens. No hand control, no leg control, no body control at all. He just drools and listens. I probably sound horrible..I hear all the be grateful for what he CAN do...at least he CAN hear, but I can't I really hate it. I love him. I love to see him smile, but I long to see him do more. I can "handle" him never walking, I can "handle" him never living independently.**I had to stop my rant and clean up the 3rd vomit of the day! He is on a continuous feed at 30 cc an hour and STILL vomits** What I am having a hard time handling is him not using his hands, him not see, and him never being able to tell me what he wants, thinks, or needs. I also can't handle cleaning VOMIT or the rest of my life! PS I hate his GI doctor to that won't refer him for a Nissan. This I am working on though.
Back to the main reason for my post after getting way off subject on my CP hate rant. I find myself grieving about things I never considered before. Day dreaming, longing, desperately realizing how I will NEVER see my son alive again. It seems unreal. It is not even the dream of seeing them all playing together, running, and fighting with each other. I am stuck in a loathing deep depression about Jacob's condition that I can't even day dream about him walking, talking etc...I know I need help..any ways as my now 19 month old almost "normal" child is beginning to do things 12 month old kids should be doing. It is finally getting exciting. He is so close to walking! Andrew can walk with just the tiniest support. I could literally hold 1 finger and he will walk with me. He is trying to stand up alone, but don't quite do it yet, he cruises furniture and walls. He pushes toys and walks with a special needs walker. He is saying words and interacting with me and his sister. He does not even pay attention that he has a brother. He uses him more as a "toy" or a chair. He will crawl on him and sit on him like he is a pillow. He hits him, chews on him, and pulls on his G-tube. He pulls his glasses off his face and takes his toys. So as I watch him eating, standing, and walking. I find myself picturing what Logan's little voice would sound like saying ma ma. Would Logan be walking by now, would he have ever made it off the oxygen by now? Wouldn't it be cute to see the boys playing "fetch" that is Andrew's favorite game. He loves to bring me a ball and I throw it and he fetches it. I picture him standing by the window getting into the blinds with Andrew, throwing toys over the baby gate, and throwing fits on the floor. I did not realize that I would miss these things. His face stares back at me in the pictures on the walls. I remember all the hopes and dreams I had for him. The hopes and dreams I had for all of them. I don't even feel like a mom with multiples some times. I guess it similar to a mom that lost 2 of her children. I lost a part of my son when the 2nd worse thing that could ever happen to me happened to my son. The devastating brain damage from oxygen depravation to his tiny body. I still find myself wondering if there is anything I can do about it. It would be nice to actually have money to take care of all his needs. The wheel chair van, the extra therapy and equipment insurance won't pay for, maybe a hyperbaric chamber (this helped him), maybe stem cell treatments who know. All I know is their was no damage when he was a week old, he never had a diagnosed brain bleed, he was the best of the 3 respiratory wise during their NICU stay, and some how 3 days before he goes home he has severe brain damage, but because he is a preemie, I hear there is nothing I can do...even though I feel in my heart that this happened to him from lack of care. Lack of someone responding to him when he was desating. Maybe this is just the thoughts of a desperate mother needing a reason for her son's condition...all I know for sure is that I hate Twin to twin transfusion. My babies would probably all be alive and healthy if we did not have to deliver them due to this evil disease!