I say that I know we made the right choice for HER.
but I would be lying if I said I never wonder.
I wonder how life would be today.
I wonder if we would have made the same choice if all of that happened now.
There is research for SMARD. There is information on the Internet. There is more than 2-3 kids with SMARD that is still alive. There are support groups. They have information.
More than what we were given.
but at the end of the day our decision was based on more than that. We made the choice we made because that's what we felt Makenzie wanted. She was not showing signs she wanted to keep fighting. She was fighting really hard and she was done with what she came here to do. Her mission was over and the only reason for her to stay was for us. Was so we could have her. As much as I want that. Time with her. A life with her. Whatever that life looked like. That's what I want. but more than what I want. I knew this was one of those decisions in life that I needed to be a parent. I needed to make a choice that was going to be hard on me. Hurt me. One that I would be in pain and I would cry and I would miss. but that's my job. That is what I signed up for when choosing to have her. I had to put my pain aside. I had to put my wants aside. I had to do what was right for her. She was done. She was holding on until I could let go. Until we could let go. She gave us a short but amazing life together. She taught us more than we could have ever learned form anyone else in that short time. She gave us the title as Mum and Dad. She was our first. We prepared for her. We were anxious for her. and we had no idea how much we would love her. We experienced all the "firsts" with her. and after she left she prepared our hearts and our home for her brother. Because he needed to come into our home already more loved than what should have been possible. Its kind of sickening how much love we had for that little boy before he was even here. and then once we held him. We have been in trouble ever since. To have loved and lost and then to have been blessed in the way we were is something no one can understand unless they have walked this same path.
I believe every parent can love this much but don't really get to experience it unless they also know the loss. Its a blessing and a curse. With all the love comes a lot of hurt and with that hurt comes this incredible love.
During the days leading up to the 13th I second guessed our choice a million times. The absolute certain feeling came and went. I never felt strong enough to change our minds but I definitely felt doubt.
I am thankful Ryan never did. If he did he never said anything to this day. He has always had a clear mind on the matter though. He connected with her in ways I wasn't able to. I am thankful for that. For him being able to be that strong.
We had pictures taken by a friend a few days before the 13th.
We also decided to have a blessing to help her on her journey back to heaven. Ryan said the prayer and just asked for God to be with her. To comfort her and to not let her suffer. We were select on who we told about the 13th. We had a lot of sweet visitors who came to truly wish us well and offer support. but there was also people who came just because they needed to see it all. They wanted to be involved and as quick as they came they left and we have never heard from them again. We didn't want the days before her death to be full of people coming to say goodbye and making it all about us comforting them. We told people usually as they were there so they could say goodbye then. We asked for no visitors the 12th.
NILMDTS came and took pictures of her. They would be back the next day as well to take some after the tubes were gone.
We decided to have that day our Christmas. My sweet sister brought us a tree earlier that month and her along with a few friends made us some amazing ornaments. Ryan went and got Kenzie her present from us. A locket. and we put pictures of Ryan and I in it. It was so she could take it with her and know we will keep her close.We sat in a dark room with only Christmas lights and Christmas music playing. My sister Jill ended up dropping by and got to hold Makenzie. We talked a little but we mainly just sat there. It was nice to feel peace. To have everything be still for a moment and to just focus on Makenzie and where she was going. That this holiday is the reason we will knew this was not the end.I remember listening to a certain song over and over.First Lullaby/Silent Night by Hillary Weeks.I remember listening so closely to those words and just realizing how close to God we are.That I was holding this angel. A real life angel. Who was hours away from being in Gods arms.It was the most heartbreaking but amazing feeling.
The Palliative Care team made sure we had a couch in our room those last few nights. So Ryan and I could both be there. Together. Every single night with her. That night we stood by her bed.
It was a hard night. Knowing it was our last one together.
We didn't sleep much. One of us kept getting up and just standing next to her.
She slept more that night than she had in a long time.
That morning I felt sick.
When I asked her that morning if today was the day-- knowing that if I felt it wasn't, everything was called off--- and I just had that feeling. That yes today was the day.
Not a huge overwhelming feeling that she was like "YES its today" but just the feeling different than any other day. A feeling that it was going to happen today.
It wasn't of peace or a clear knowledge that this was the right thing. but almost like a fact.
Knowing the sky is blue is a fact.
Knowing my daughters life was going to be over today was a fact.
I watched the clock more that day than I did my entire life. It seemed to be a long day but then again it flew by. It was long emotionally but every time I looked at the clock it was closer to when it would all end. and that I was no ready for. I really was not ready for it to be over. For my job as her Mother to end. I was not ready to walk out of that room without her. To go home and get back to a life she wasn't going to be in. What was the point? How was I going to get through the next day... the next week... the rest of my life. Without her.
I kissed her over and over. I couldn't stop telling her how much I loved her.
Ryan and I both held her. He went first. We didn't say much that day.
We kept the TV on to distract us but I cant tell you for the life of me what was on.
We were both on edge. Do you ever have those days with your spouse. Its suppose to be a great day. An anniversary or something. and for whatever reason that is the one day you cant get along? It always seems to be like that with us. Those "big" days are always the days we have trouble communicating. We have trouble being on the same level. Since this day. The 13th in 2009. We have always had trouble this day. and her birthday. and they are the days I wish were the easiest for us. but I think its because they are the hardest days of our life. Every year. They are the constant reminder of what happened this day in 2009.
December 13th 2009. We woke up as a family.
But knew we would not end it the same.
We gave her a bath. It was one of the most special baths. Knowing this was her last bath.
I took my time and kept having to add warm water. I massaged her body. I played with her hair. and she soaked up every last second.
Later we wrote her letters.
and then we sat there. I held her. and then I passed out.
I was frustrated at myself when I finally woke up because I "wasted" time sleeping when I should have been watching her. but looking back I am so glad that happened. I am glad I got to nap with my girl. One last time.
Ryan was the one that woke me up. It was almost 5 and we had gotten called letting us know our parents were waiting for us in the waiting room.
They came in. They were still standing at the door.
When she started making a weird gurgling noise.
I told Ryan to go get the nurse.
I noticed the tape was in a different place.
The nurse took one look at Makenzie and ran back out the room and yelled- "The tube is out!"
I couldn't believe it. I grabbed her tight. I don't remember much about these minutes other than her.
I looked up at one point to see someone pushing the crib out of the room and realized the entire room was full. I looked at the doctor when she said. "Her tube is already out... Are you ready?"
I was holding her hand. She was holding it back.
I kept asking if they could help her. Make this easier for her. Give her something so she wasn't in pain.
She was gasping for breath and arching her back. I couldn't see her face. There was arms and people in the way. I remember feeling Ryan. He was telling her how much he loved her. I was trying to push the foot rest down on the chair so I could sit up right. but I couldn't.
I was just trying to hold her in a different way. Still allowing the doctors to get to her but to get her closer to me. It was minutes if not seconds that everyone backed away and just let me bring her to my chest. She wasn't struggling much by this point.
Ryan was trying to sit next to me. I think somewhat on the edge of the chair. I felt him the entire time.
My Mum at one point came and knelt down where I was sitting and just held my legs. I know Ryan's parents were close and can only imagine what they must have been feeling.
To see their baby hurting. Saying goodbye to their baby.
It was all very surreal. It was fast but clear. When her fingers lost their grip of mine I just couldn't breathe. We knew this was coming. We knew what was happening but this was the moment that our constant focus on what was best for her and not thinking about ourselves went away. This was the moment she was leaving us. This was the moment she was getting the relief and freedom we had prayed for. but the moment we were left empty. Aching for our baby. Knowing this was the end. She was taking her last breaths and dieing. We would not get to see her grow. We would miss out on anymore of her smiles and laughs and milestones. God was there. Waiting. He carried her through those gates and she was in paradise. She was with angels and surrounded by love.
We were sitting in a cold room. Holding our entire world. The most incredible. Most inspiring. Most beautiful part of our life. and she was gone.
The doctor came in and listened for a heart beat. and then called her time of death.
5:25 pm
I sat there. Finally able to get that damn chair to sit the way I wanted. and I put her on my shoulder. and I snuggled that girl. I cried. I sobbed. I felt like I just could not breathe.
This was the moment it became about us and the pain we were now left to live with.
We asked our parents to come at 5:00 so they could all get a chance to hold her before we took her off.
That didn't happen before. but they all took a turn to hold her after.
We all sat in that room. For hours. NILMDTS came in to take some pictures without the tubes.
and I then gave her a bath. Her last bath. I bathed the body of my baby.
I could barely see through the tears the entire bath so I have no idea how it went. but I know it was a wonderful feeling to give her one last bath. To wash off all the tape. To massage her little holes from the IV's and to freely move her how I pleased.
I then dressed her. and it was soon time for us to go.
How was I to walk out of there? Hand over my baby. Her tiny little body still needed me to protect it. How could I trust someone else to take care of her?
She was cold. So I asked for a blanket. I wrapped her tight. One of our favorite doctors came in. She was full of tears with us that entire night. She gave me a little smile. and stood there. I stood there. I have no idea how long. and then I handed her over. She took her. and Ryan took me out.
I remember watching the ground and glancing at the Christmas trees as we walked out those double doors. I wouldn't look at anyone. We walked through the waiting room and down the hall. and down the stairs. and to the front door. I stood there for a minute. Feeling people move past me either way. and it was the first moment of many I wondered if anyone knew my baby just died?
Did any of these people know what had just happened?
With our parents we walked outside. and let all of the balloons she had in the hospital go. Sending them to her. Imagining the celebration that was happening at that very moment.
My days with Makenzie were spent pretty simply. Anytime there wasn't test being run, CPT being performed, stats going crazy so nurses and doctors trying to figure out whats wrong, talking through rounds, being observed, answering calls, talking to insurance... We read a lot of books. We talked. We watched TV. I would play with toys with her. I would tickle her arms and legs. We had lots of visitors so there was always someone stopping in to say hi. As simple as our days might have felt they were the very best moments with her. Slowing down and really taking in each and every moment with her. After Ryan and I decided we would take her off life support on December 13th I made it a point to do as much as I could in the time I had left. Telling her stories I imagined telling her in life. Everything I could think of. How her Dad and I met to our marriage to having her. I told her the good stories and our struggles. I told her what I wished she would do in life. I told her my views on many issues in the world. I talked about what I imagined our family looking like. I told her what I thought heaven was like. I told her with our reality what our future will probably look like without her. I made her promises. I asked her for a few favors. Every time I talked to her she just laid there watching me. Sucking her fingers. Listening. Sometimes smiling. She didn't smile much by that point so when she did I knew I said something silly or dumb. Which I do a lot so I am glad she could see how crazy her Mum is. Every morning I would wake up and go to her bed before I had to leave for the morning switch. I would ask her if today was the day she wanted to go to heaven? I never got the feeling it was today. and I was always relieved. Not until it was. That day I knew. We picked that day so we could have the doctors, nurses and Respiratory Therapists there in the room that we wanted. They knew us. and they would make sure Makenzie went in the most peaceful way. Just how we wanted it. We knew they loved our little girl and that they would take care of all of us. We had to kind of work around their schedule which is how we came up with a specific day and time. It was sickening to have a date. To know when she was going to die. As much as I didn't want to lose her. Much of the sadness didn't come until after she was gone. Our focus was so much on her in those moments. and she was miserable. Every.Single.Day there was a new issue. Something was failing in her body and she was dieing right before our eyes. In my mind I was looking forward to her freedom. I wanted nothing more than to give her some relief. I prayed so hard for God to take away her pain. I prayed for her to have some comfort. It was the worst feeling watching her suffer to death while I couldn't do anything. She tried to scream and would cry every time they had to perform the CPT and cough assist. I had to hold her in place so they could do their job. I would sit there and cry. Holding her and whispering that it wasn't going to be like this forever. I would pray for her to have comfort and for angels to hold her. Her GTube was a constant issue so she never was getting enough nutrients. We did the GTube because it was the best way to get food in her since she was so underweight. Her nissen wasn't working which was causing her to throw up which is very dangerous because if it gets into her breathing tube and into her lungs it will kill her. Her GTube wasn't venting properly so she was getting giant gas bubbles that they couldn't get to go away so they would have to stick a huge tube in her nose to pretty much suck out the air and put a feeding tube in her other nose to get food back in there. This is just a small piece of it. and everything was something for her. Something that hurt. Something that made her more restricted to the bed and less likely for me to hold her that day. She cried a lot. I will never forget those tears running down her face and no noise coming out. She was losing more and more mobility. Her legs didn't do much. Her hands were weak but she was able to get them to her mouth still. We tried to cut binkies to fit around her breathing tube. She like them some and would use them but loved her fingers more. That was new since she got to the hospital. She was a binkie girl before. Like I said she didn't smile much. She didn't laugh as often. She tried to sleep but didn't get much rest. I did everything I could to make sure she was as happy and comfortable as possible which meant the nurses were probably really annoyed with me. I hate being that person but I needed to be her voice and I knew her better than any machine. I knew when she was struggling even if the alarms were not going off. By this point I made it a point to hold her everyday. It was really hard for me to hold her because her stats had to be perfect. She was pinned to me and I was pinned to a chair. I couldn't move. I would have sat there still. Never moving if I could. I asked all the time and unless it was the right time they would tell me no. When I could hold her It was so hard to hold her but not really hold her. I wanted to just snuggle her. Feel her body next to mine. Not with pillows between us. Although I wouldn't trade those moments for anything. They were the absolute best. I know how lucky I was to be able to hold her. That doesn't always happen. I wished I would have asked if I could lay next to her in her hospital bed. I felt silly thinking they would say no. I regret that so much. I have since known people that said they did that. If heaven forbid your child is ever in the hospital- don't be afraid to get in that crib and lay next to them. I laid next to her one time. Days before. During pictures and I cried the entire time. It had been over a month I had been able to feel her body like that. It had been so long since I had been able to feel her everywhere. It felt amazing. I wish so much I had done that more. I think it would have helped us both so much. I did as much as I could to still feel like her Mum. I was the only one to change her diapers and her GTube dressings. I painted her nails and I changed her leggings everyday. It was the little things that I needed. but they were not enough. I had very little say over what we could and could not do with her. It was necessary in order to keep her alive. I had to follow the rules. but I felt powerless. I was extremely paranoid about germs. They cleaned her room and I cleaned her room. I was a stickler about washing and sanitizing hands. Which resulted in me having constant sores. My hands bleed daily. but they were clean. She was very susceptible to any sickness and even the smallest cold could kill her. Our days were simple in the sense we sat in the same room. Looked at the same 4 walls. The same balloons. The same pictures on the wall daily. We didn't get fresh air or take some walks. but they were full. We were surrounded by so much support and love from the staff at the hospital. Our friends and family. Makenzie always had a new toy to play with from someone that dropped by. I am thankful we had so much time to just look at each other. Since having Tracker I didn't realize how little anyone does that. There is so much to do in a day. 20 minutes of just watching him seem like a lot of time. but I spent hours doing it with Kenzie. Hours just humming songs and telling her stories. Hours kissing her face and imagining what her new life would be. Dreaming of her world with angels. Hours begging God to comfort her and take this pain away. Hours watching her breath. When I say I slept there. I mean I took a night time nap. It was hard to sleep. The machines were consistently going off so I was always jumping out of bed to see what was going on. So my naps were usually 4ish inconsistent hours of rest. They were enough then. But the rest of those 20 hours a day was spent just with her. Focused on her. I am thankful every single day that I could be there. That I didn't have to leave. I cant imagine what I would have done if I had another child to think about or work that wasn't so understanding. I really feel blessed. That time was meant to give us time.
Right after we came to the PICU the Palative Care Team (Rainbow team) whatever you might call them came to Ryan and I. They are a group of social workers, a Chaplin and other supporters of us. They checked on us quite a bit through our entire stay- pretty much daily. They always made sure we were taken care of and any questions were answered. They were kind of like a friend we could lean on when we needed to talk through touch decisions and had the expertise to help us come up with a decision that was right for us. Shortly after we were told Makenzie had SMARD (unofficially) they had Ryan and I come to a meeting to answer questions for us and get everything out on the table so we could figure out what to do. We went into that meeting with 2 very different ideas for what we wanted for our daughter.
Ryan knew right away that whatever decision we make was to be made solely with her in mind. What her life would be and what she would tell us she wanted if she could talk.
I couldn't think past doing anything we could to just keep her here. Keep her with us. It didn't matter what our life or her life looked like I needed her. I needed to be able to have more time. I was her Mother and as her mother I thought the best thing to do was keep her alive.
We were in that meeting for a while. Ryan was having a really hard time expressing himself because he knew I didn't feel the same as he did and was worried how I would react to him. I remember after going back and forth with several questions and discussions one of the social workers looked at Ryan and asked something along the lines of--- "You don't agree with this do you? What do you think is best" after beating around the bush and saying things like this is "okay"... I turned to look at him as his face was so sad and he finally said-- I think she is done. I don't think we should do anything more and we need to let her go.
It was a while before I said another word. The next thing I said was after a question they asked me and all I remember saying was... "I just cant say I'm okay with my daughter being dead."
They talked to us for a while longer about how we should be thinking of this and that the word "dead, dieing, death" isn't always the best. We need to focus on what we believed would happen to her after she died.
We left with a plan to spend that Saturday "trying on" our options.
We asked for no visitors.
We spent the first part of the day living our life, talking and making arrangements as if we were going to trach/vent her and the second half of the day living, talking and making arrangements as if we were going to take her off life support.
That was the most emotional day of my life.
From the beginning of the day I just knew. I knew in my heart that she was not meant to ever leave this hospital. I spent that first part of the day trying everything I could to convince myself otherwise.
Right after we got to the PICU we had started making several arrangements on how we would be able to bring home a special needs child. Our townhouse was put on the market, we had started to sell many of our items for extra money, we had looked into all different state assistance to help with all the medical costs. After we knew she would need a trach we started to talk to other families who's children had a trach. We met 2 of those families in person and I talked to 2 families on the phone. They were absolutely amazing. Some of their children had SMA, one of them had SMARD and the other had a different type of neuromuscular disorder. They gave me the best information. The best tips. They offered so much love and support. I felt like if we chose this option I would have such a beautiful support system to help us through it. We learned that the trach really isn't as scary as it seems. That we could do it. That its all very much life changing but it would also mean we would have Makenzie. We asked the good and bad. We talked about how they do simple chores or how they go on vacation.
We met with a sweet little boy who was also in the PICU who had SMA. His mom was the sweetest and really gave us great advice. It was good for me to see her beautiful son. He did not have much mobility but you could still see so much life in his eyes. I was grateful they gave me the opportunity to be apart of their families journey and to take time away from everything they are going through to help me.
That night we were pretty much 'ordered' by the Palative team to leave the hospital. For the hour shift change we ran to dinner. It was the most sickening dinner I have ever ate. I couldn't focus on Ryan and I. On the food. All I could see was people living. Living and smiling and holding babies and laughing. I remember thinking that should be us. We should be out to dinner with our baby. Not trying to decide when she might die. My sweet friend Allie was out of town and let us run over so I could take a bath in a non-public bath. We couldn't figure out how to turn on their heat to the water so I had a luke warm bath. but it was still lovely. I sat there. Not long. before we headed back to the hospital.
At the end of the night on Saturday I felt we were closer to making a decision. I actually did know but just couldn't say it yet.
I held Makenzie after Ryan left that night. I held her for the longest I had held her since we got there. I watched a movie on my friends laptop that she let us borrow and I just sat there. Wishing this wasn't our life. That we didn't have to make this decision. Wondering how I would ever possibly be happy again.
Right before I went to bed sometime after midnight I asked one of the doctors there about organ and tissue donation. I know she was surprised I asked about that since we hadn't made any decisions but it was something I feel very strongly about and wanted to know our options. Hoping that would make our choice a wee bit easier knowing we might be able to help someone else.
