I say I am confidant in the decisions we made.
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.
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.