Sunday, November 6, 2011

Our Life has Changed. Again.

I never thought I'd be here. I was going to come back with a great transplant story and a happy little boy who would be cured and live a long happy life. Instead our plans have once again been changed. When Tyler was first diagnosed that it was horrible. Our life changed for the worst and suddenly there was so many medical things to learn and my baby was sick. My whole life was suddenly all about medicine, hospitals and appointments. Annoying, but necessary to keep my baby alive. When Tyler finished his first 6 months of chemo I breathed a huge sigh of relief. He had made it past the worst. Anything else from there was tolerable. Appointments, meds, feeding struggles. Who cares, he was home and happy. We were all happy.

When he relapsed I was somehow not very surprised. I felt it coming. He was in the highest risk category and the other kids in our online cancer group had been relapsing too. The 3 months of chemo after relapse was very tough. Then transplant time came and finally there was a countdown. Only 100 days until I'm home with him for good. Sure there were risks, but there are dozens of little kids running around the Ronald McDonald House after having their transplants. If they can do it, my Tyler will have no problem. He did great for the first week, they even said one day "wow, maybe he won't even have many problems at all". Then things went downhill. He was admitted to ICU because he had too much bleeding and it got in his lungs. Not a huge deal, just needs some time to heal. A machine will help him breathe as we wait for those white blood cells to produce and work their magic. Heal those sores and bounce back to the 4th floor. Then he was retaining fluids. His liver went bad, followed by his kidneys, adrenal glands. He started to make progress and we were so relieved. He was going to pull through this, no doubt in our minds. He's been close to death before and pulled through. He always does, Tyler is a fighter. Before I knew it he stopped progressing and they were suddenly saying he was probably going to die. I couldn't wrap my head around it. This is Tyler, he pulls through, he always does. Yet things continued to get worse and we watched as our precious Tyler slipped away. They brought him back once after his heart stopped, but his body couldn't handle any more. His pupils got unresponsive, indicating no brain activity. He'd been on the breathing vent and sedated for 5 1/2 weeks. The day came to say goodbye and I finally got to hold him. One more time. Other moms have written about feeling their child's last heartbeat. I couldn't. His heart was still going, but was too weak and barely moving, not enough to feel it through his chest. He took his last breath and I was sad, but relieved that he was no longer suffering. Nov 2, 2011. I don't know how I walked out of that hospital empty handed. We were both in a daze. We sat holding him for an hour, then didn't know what to do. It was ackward. We didn't want to leave Tyler. Ever. We had to sometime though. A friend stopped by and we ended up going to the lounge to visit. Without her we would've still been sitting there for hours I think! We visited and it was a breath of fresh air to be out of the room, but knowing he and our stuff was still in there, we were mostly ok leaving the room. When we finally packed up and left, there was a mom I'd talked to earlier who was watching for us and walked us out. We managed to drive back to RMH, I somehow typed my Caringbridge post while it was still fresh, mostly wanting to get it out of the way so I didn't have to re-live it tomorrow as well, and promptly went to sleep.

The next day I had a plan. First I had hoped to wake up to find that was all just a horrible dream. Unfortunately that wasn't the case. We sent Dawson to the Autism Center for his last day, so his stuff could be returned with him and he could have some normalcy. I then planned to sleep in, shower and pack. I did sleep in, but I never got the shower and I didn't get too much packing done. Thankfully we had done a bunch several days back of stuff I wasn't using anyway. Then my cousin packed a bunch more the day before. I had a friend visit, which was great. It took my mind off things and got me going. Then 2 more friends arrived as planned to help us move back home. We got our stuff all packed up and loaded into the vehicles. Had our last supper at RMH, said our goodbyes and left. As we got onto the freeway, Dawson got excited. "Go see Tyler!". It was hard driving past the hospital, knowing Tyler was there, but not really. Knowing that I would never return and that part of my life, the current biggest part of my life for the last 2 1/2 years, is over. I was dreading going home, seeing his empty bed and his toys all over the place. I had posted on facebook that I could use some help moving back into our apartment. I was so weary and tired I just didn't think we could do it alone. Thankfully we got amazing help. People came, at 9pm and not only hauled everything up to our 2nd floor apartment, but also did dishes, cleaned up the toys and helped unpack some things! A friend had sent a lot of groceries, so those all had to find a home. My kitchen is now overflowing with food between the 2 people who brought some and I just found out tonight we have more groceries coming tomorrow. Amazing. By 11pm we were both exhausted and weary. We had 3 people left and we decided we needed to sleep, so they left. Gabriel had some issues getting to bed, he wasn't sure where we were. He fell asleep with me, but I did get him transferred to his crib.

The next morning we woke up and realized things were the same. We wake up, realize again what has happened and just don't want to get up. Thankfully I have Gabriel, who I can't ignore. He makes me get up, change and feed him. He makes me smile at him and keep him happy. His smiles are contagious. Then a few moments of happiness pass and I remember that I'm not supposed to be happy. Tyler is gone, am I allowed to smile? Probably not, it's weird. It feels wrong. How can anything be happy when my most joyful child is not with us anymore? Then Gabriel smiles again and I realize that Tyler would want me to be happy and would want his brothers to be happy. They deserve to be happy. Plus I promised Tyler I would be ok. It was part of my plea for him to get better or be done suffering. Still feels weird though.

I called the funeral home and they set us up with an appointment for Monday, Nov 7th. I thought it would be sooner, but he had to talk to people at the hospital first and they aren't there on weekends. It did give us some time to think about what we want first, we've been back and forth about what to do. I went online for a while, reading all the supportive messages, emails, facebook posts, etc. I had 1200 emails and about 100 friend requests. I looked through and chose the ones I knew were part of my new group, the grieving mothers. I don't know what I would've done without the other grieving parents who know what we are going through. Their messages, just knowing that the different feelings are normal, is very helpful.

I've had talks with Dawson. The Child Life lady gave me a book on how to answer questions. Only the preschool section is just a short paragraph that in summary just says that children of this age don't understand death. They think it's a temporary thing if they acknowledge it at all. They recommend to keep explaining things, looking at pictures and keeping his memory alive. I also have a couple books for kids of his level. Dawson liked the pretty clouds and other pictures as it described where you go after you die. He had no understanding though. I told him Tyler is gone, but that's not news to him, Tyler has been in the hospital for months! I told him Tyler is no longer hurt or sick, then Dawson said "go to 4". I had told him when Tyler went into the ICU that when he got better, he would go back up to 4th floor. I told him no, he is gone, he went to Heaven. He said "no" and walked off. He didn't sound upset, he was just done with me talking nonsense and wanted to go play. He's been watching Tyler's videos too. He can sometimes get obsessive about them. Once he starts, it's hard to pry him away from them. I've been using the transition preparations that his school does and that really helps. I said 1 more video, then all done. After he'd been watching them for quite a while. He likes repeating parts over and over. A word Tyler said, a giggle, etc. It's weird being in the other room and hearing Tyler's voice, even though I know it's coming from the video.

Today my mom came over and we got 4 poster boards done. Then the 4 of us (will take a long time to get used to that number again) went to the Pizza Ranch benefit that our friend set up for us. There was a line out the door and down the sidewalk. It was amazing to see all the familiar faces. I wasn't sure how I would handle it. The first time I went somewhere was Friday. I cashed some checks and went into Toys R Us for something for Gabriel's crib. I wasn't in there 5 minutes and there was suddenly a little blonde 2 year old boy in front of me with a huge grin on his face holding a Cars toy. Instant tears. I decided that was not the best place for a first outing. The benefit was different though. There were children there, but there were so many people I knew and I got so many hugs. I didn't even cry. I wondered if that was weird, or if the people noticed. I've had 2 1/2 years of practice with not crying in front of other people. I save it for later, it's just what I do. Most of the time.

The last few days have been tough. It's hard to describe this feeling. It's like an elephant is sitting on my chest. Another mom described it as drowning or being suffocated. My heart physically hurts at times and I often have moments where I can hardly catch my breath and I had just been sitting on the couch or something. During the day I have the pain, but less tears. The kids keep me pretty busy. Then when I'm alone, the faucet gets turned on. The bathroom, shower and bedtime usually. Knowing I have just spent another day without Tyler and knowing I will wake up an have to do it all over again is hard. People ask me how I'm doing and there are times where I wonder if I tell them the truth, if I'll end up in a padded cell someplace! I will be ok. It will not be the same level of ok that I was before, but as others have said, you learn to live with the pain and let life continue on. I just wonder how long it will be before I get to that point. It has been 4 days without Tyler and it feels like it's been 2 weeks.


Unknown said...

Stephanie, You leave me in tears. Of course I have nothing I can say, but that I am still praying for Tyler, for you, and for your family. I think of Tyler so often, through the day. <3 And each of these four days, my heart has broken over for you.

Jennifer D said...

Stephanie, this is just beautifully written. I wish there was something that could be said or done that could help ease the pain just a little as I know nothing can make it go away. You have been an amazing person to watch and spend time with since the kids were born and I believe in my heart you will find a new normal though a special angel will always be watching over you with a special smile to hopefully brighten your day. So much <3!

Kristin said...

I can't even fathom how you feel...all I can say is you and your family are loved by so many people. Thank you for sharing your needs, your love for Tyler, and all the struggle. We may not understand, but we hurt for you....and we all care.

Love from Louisiana

cprom said...


I am crying as I write. Thank you so much for sharing your thoughts. I am so glad to hear that you are connecting to other moms who have lost children. I hope and pray that they are able to provide some sort of comfort to you, and to help you feel that you are not alone. Not an hour goes by that jason and I don't think of you and dan.

Camie Prom

R. Schlap said...

Stephanie and Dan-
I don't have any words to comfort you. They are merely words and will never bring sweet Tyler home to you. I lost a child before birth and I can relate to the dread of waking up and knowing that it's actually real ... I cannot begin to say that I know how you feel, but I do carry bits and pieces.

You all are always in my heart and we love you and are here for you.


laura said...

thankyou so much for adding me here to be able to share in Tylers life. He is beautiful and sorry can never express how i feel for you. I couldnt imagine losing a son. You are the strongest mother and i have so much respect for you. Tyler has touched my heart dramatically and left his imprints that will never go away <3

Unknown said...

My heart aches for you. You and your family are in my thoughts and prayers often. Your family has touched my soul....

Erin said...

I visited a friend yesterday that also lost her little girl this past week to cancer. She was 2 weeks shy of 3 years old. Things that you said that you feel, she has expressed as well. I have been praying for both of you....I can't even begin to imagine the ache you feel. Of course my mind goes to my own little girl, or any of my other ones, and there is just a huge fear there. I may be right were you are someday. And quite frankly that scares me to death.
You are right, Tyler was a fighter! And you as his mom, are an amazing fighter too. You are in my thoughts constantly that in these coming days you will have a peace and comfort that you haven't known. I know that God can and will do that for you. Praying for you..... Erin

Samantha said...

Everything about your story hits me so close to home. I too have three little boys, my middle son being the same age as Tyler. Reading your story and thinking about losing Brady, or any of my boys, I just don't know how I would or could ever handle it. I do hope, so badly, that you and your family find some peace in all of this.

Best wishes to you and your beautiful family.