I'd be lying if I said I wasn't scarred... scarred that Jay is coming home in one week, on the 17th. He is not fully recovered, he needs assistance with a lot of things. However, from where he was a month ago to where he is now, it's truly unbelievable. He went from not being able to move at all to actually walking now with some assistance, the therapist got him walking to the point of just needing hands on him in-case he loses his balance. He can't walk for a very long distances, the endurance is not fully back either but he CAN freaking walk, talk and makes sense, feed himself, thank goodness! Yes, all those little things that the doctors couldn't tell us or doubted he would be able to do, he IS. How far he has come is truly remarkable. I am beyond grateful.
He is still extremely weak, because of the muscle and nerve damage, those things takes a very long time to heal. His body is kind of stiff and tight, he can't move like he use to. Today I was watching him in physical therapy, his exercise was to get onto to the floor from his wheel chair and get back up. He did it, he always doese whatever task he is asked to do but it was by no means easy for him. As I watched him, I saw a look of pain rush over his face, he said it didn't hurt but he wouldn't admit it if it did.
The other day his speech/cognitive therapist, had me draw the lay out of our apartment to prepare him for coming home because he could not remember it. He remembers older memories just fine but newer ones, that mostly consist of our life together as parents, are not there. A month ago when he first got to the rehab, he knew who Jordan was because we hung pictures of them together all over every hospital room he was in, he knew he was a Dad but could not remember it. I would show him a picture and ask if he remembered the day, he couldn't. It took everything in me to not cry in front of him and sometime I would just have to walk away. But as I drew the lay out of our home for him, little memories started to come, like when we would take Jordan for walks as he was learning his ABC's, he would look up at each building, point to the letters and shout it to us. He remembered we picked a jungle theme for Jordan's room when he was born, he remembered the colors we painted the rooms. Today, when I asked him again if he remembered what our home is like, he did not.
It makes me so mad, for those memories to be taken, it just hurts. Of course I know it's not his fault, it is a result of this horrible rare disease that we got so lucky with. Supposedly the memory takes the longest to come back after something traumatic happens to your brain. Memory loss and decision making issues,everyday he is stronger than the day before it's just going to take a long time to get his full strength back but I have no doubt that he WILL. It can always be worse and for that, I am grateful.
I'm still afraid, I don't want to be. I want to stay as positive as I can. I believe staying positive has the most power in life. I did not start thinking this way until a few months before Jay got really sick but I'm glad I did because it helped. Positivity gets you where you want or need to be and truly believing that you will achieve whatever it is that you want/need. Staying positive trumps it all. That's what I tried to do throughout this whole ordeal,I tried my best. I would do things like made sure Jay had an outfit ready to change into in whatever room of the hospital he was in, and shoes so he could be ready to get up and walk out. When I took the train to Jefferson in Philly, I carried an extra train pass for him to come home with. Hung pictures of him strong and healthy with Jordan. I tried to align everything to be ready as if he was coming home at any given moment. It helped me know we would get through this. Well... that and I drank, more than usual. shit happens.
But that time is finally getting here, Daddy is going to come home just like we wanted all along and here I am getting scarred. I'm scarred of having an amazig, ever changing three year old and his Dad having a disability that will require my help for most things. I have no clue what issues we will face bringing him home, he has been recovering in such a structured, daily routine. I don't do routine besides nap & bedtime and I am not structured, more like a well kept mess! Which one should I get out of the car first? How will I push a wheelchair and shopping cart at the same time? All the freaking paperwork, fighting for social security, the phone calls, the bills and the pile of medical bills, (the one bill I actually opened, was the helicopter transport, Thirty Three Thousand Dollars! I feel like it's just wrong to send a bill like that at a time like this! why can't insurance just tell us they are paid!?) All the appointments to make, getting him to his outpatient therapies, remembering to give him his medications at the right times, home nurse visits, hands on training for Jay that I never feel comfortable doing because I can't lift him, what if he falls? Did I mention we have a three year old? Three year olds are insane! What if I neglect our son? I already felt that feeling everyday that I have left Jordan with a family member since this disease came and knocked us over. But I told Jordan all along Daddy was coming back home and so it became my mission. How do I balance that now? I am truly grateful for the family that helped us and continue to during this time, words could never express it, EVER. Our dreams that we were SO close to reaching of Jordan having a backyard to play in, how long do those dreams have to stay on the back burner? I'm just so damn mad at this disease and what it took. It took Jay's strength away, that is what balanced me most. I am afraid of all the unknown and I am afraid of always feeling this alone, because this is very a lonely feeling no matter how many people are around you. The past three months have taken their toll and there are no breaks in between..
I don't mean to be complaining, In the end we got all that we wanted and what Jordan needed, Papa bear is coming home. This is the hand life dealt us and there is no choice but to play it out and try to stay positive. Seriously tho, the whole car thing... I had issues getting the stroller folded and put back in the car and now we're talking a toddler in a carseat, daddy who needs help and a wheel chair... How the hell am I going to do this!?!
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