Hi TyTy. It has been awhile. I guess denial lasted me a few more weeks this time. But early this morning I was finally able to go to sleep. And with it brought yet another dream, which has me skipping sleep in the first place.
All the players were there. Dr. G, Mary Lou, Steve, and Myriel, which is odd because he was never on your case, only Dylan's, and only while in the hospital. You were alive, but they had sent us home for you to float away. The kind of sent home that no return appointment are made, but we were up there yet again anyway. You were in your stroller, and although I knew in my dream you were dying, it didn't look like it to me. Mary Lou came to your stroller and took you right out like she always did and gave you kisses and called you lovey, walked right to the room with you. Steve comes flying in with his file on you, and gets right to business. For some reason I was outside of the room and the view in my dream was looking in seeing ten people over you. Just like the last time I seen you awake. I watched them take you to the PICU, knowing it could be the last time I see your eyes, but not having it sink in enough to take advantage of the time I had left with you. Steve comes out and says something ( I can't remember what he said) exploded, and if it did you will be in the hospital. I thought, well, you guys thought he would be dead by now so one hospital stay I can handle so he can get fixed. It skipped a lot of points. Dr G flew in and flew out and then Steve came back and said. All is good. You can take him home to die now. (Which he would never do. He was the most supportive of the upper staff those two days. I don't know how he does it, but I'm thankful he does.) This is so odd to me, but then I thought in my dream. Maybe you can prove them wrong TyTy. Maybe you can prove them wrong and stay for one more Christmas. As I woke up I remember that I had actually said to TyTy. A week before his death he was taken down to PICU for sepsis. Tyler was trying to make himself puke. He would put his fist down his throat and try to make himself puke. In my head I said, what am I doing to this child? I'm being selfish not letting him have peace. He did this the whole day. He had a fever, a high fever, and then trying to gag himself. A two year old trying to gag himself. I told Dr G and Steve. I wanted to take him home. I knew that day he was gonna leave us. I felt selfish for keeping him because we wanted him here. After a lot of going back and forth, he ended up in PICU being treated. That was the day a promise was made to me, and that was the day I knew we were gonna lose our TyTy. He had a very rough weekend. He woke up the next day in the PICU sore and agitated. Which wasn't normal for TyTy. He laid staring into space and I told him I know you are getting tired baby I can tell. You give us until Christmas baby. You have fight this long. You hang onto us until Christmas so you can see with your older age what it is, so you can see the boys on Christmas vacation, and maybe even one more trip home before you find the peace you should of been given at birth. The same peace so many other children get, and so many others don't. Health. I told him I was proud of him. Tyler died December 30. He came home on Dec 24 and had Christmas with us, spiked a fever mid Christmas day. Had respitory problems on my birthday the 29th and was put on a vent that night. 3:20 pm dec 30 he left us. i think he stayed for the family.
i write this in such pain. so much pain i don't even know if i can keep typing. i miss you so much tyty. i picture looking back in the van and seeing your eyes look up at dylan, feeling your feet, your back, your little butt, rubbing your cheeks. the hole is so huge. dylan sat in the middle of the floor crying he wanted tyty. i sat down and cried with him. it kills me and is eating me up inside that only did we lose you but we are watching dylan and brandon grow up with such a huge hole in their hearts. their hearts are gonna be broken so many times and it is sad to me that they are already gonna have a weak heart going into that.
there is so much to tell since i last wrote. nammy got me a blanket and it is the first time i was able to sleep a full night. i curled up with you like i would if you were here. i slept until noon the next day. it is so real and beautiful tyty. you were so beautiful.
i did good for a few days. had erin come over and nammy came up to swim with the boys. i was doing real good. so i decided i was gonna sit down and write replies to emails that have been sitting in the box for months. my goal was susan grosclaude, ruth, nicole, and jenn. i sat down and my computer wouldn't connect. of all days. the day i feel i'm strong enough to talk to someone. then i get up the next day and it had hit again. you were gone and i couldnt even get on the computer. kids were playing outside. dylan too. i thought wouldn't tyty love to be in his high chair right now watching them. i stared at your picture on my fridge as i looked out the kitchen window. i thought about everything you didn't get to do, everything you should of gotten to do, and everything you wont be able to do. i cried until one of the boys came in. i feel so guilty that i brought you into this life promising to protect you and all i did was expose you to pain and suffering and 18 months in a hospital. tyty you were only home four months of your life. home to you was room 87. where you took your last breath.
school starts this week. dylan doesn't want to go, brandon needs to go. i dont know what i will do with my time. i would get them off to school, get morning meds done, change your diaper, get your breakfast, more meds, write while you swang and took a nap, more meds, play with you, watch you crawl across the floor to me. tyty what did i do before you? i want you here to fill my time. we should be getting ready for your birthday. you could have hot wheel cars this year tyty. your dad would have so much fun picking out the traditional twenty car lot you boys would get on your birthday. one more month and then two more months and it will be a year. why? how have we lived without you this long? tyty i miss you so much. joey told me to write in here because i always cry and he thought i needed it. but it just makes me *tears* miss you so bad. makes me feel the pain so hard I can't breathe. i know this is naive and i know so many families are saying the same thing as i will right now but how can the glue to your family be taken away? you were our final piece our glue our piece that brought us all together. why take that away from you from us?
i think back and there were so many times we came close to losing you before the diagnosis of scids. the pregnancy complications, the birth complications, bleeding complications. if life was only gonna be... if god *tears* has a plan why did he make your plan filled with suffering when he could of spared you it so many times before? i know that sounds awful and it came out wrong. i wouldn't take away the two years we had with you but you suffered so much and i'm so sorry baby. mommy is so sorry. we wanted you so bad.we wanted to make you healthy and we always thought it is rough now but it will pay off when you are 18 and getting your diploma *tears* but you wont be. and i'm sorry for the pain i put you through the last four months. i'm so sorry. i should of fought harder for you and if i didn't think there was even the slightest chance we could save your life i would of... i'm sorry tyty. i wanted you to see life without pain and i still thought there could be a chance we could do that. i'm sorry. i'm sorry for all the days you were in that hospital alone while we were sick or getting your brothers or needed time away. tyty i'm so sorry for every procedure, shot, stick, med, i'm so sorry tyty i'm so sorry. my arms are empty. the day you went into surgery for your cline. two months old. the guy in scrubs took you from my arms. my arms were empty that day. i knew what was coming. i never knew my arms would be empty forever.
tyty you were my heart and my heart doesn't know how to beat to make me live anymore. i am a shell that exist. always will be without you. you may of only been here two years but the impact you left on this family had the quality of a hundred. i love you precious baby. sorry mommys thoughts are confusing
.3.jpg)
.0.jpg)
