MacKenzie Erin Thomson

September 30,1994 to February 4, 2007

(12 years old)

Daughter of David and Robin Thomson

Sister of Alex, Zach, Nate and Belle

About a year ago, my husband and I sat in a quite location and talked about our little girl, MacKenzie. We talked about the changes we were seeing in her. She was having such a hard time breathing, she was so sickly, so frail, getting pneumonia so frequently, her back was curving forward and sideways badly and it was compressing her lungs which didn’t help with her breathing struggles, she didn’t seem to have the content, happy look on her face that we were so accustomed to. We felt that our time with her was coming to an end. We talked about what we wanted our time left with her to be like.
For quite some time we had been leaving her at home with her grandma or a respite provider when our family went out. Sadly, for the last couple of years, we didn’t have as many pictures of her as we had used to, because she was getting left at home--to protect her. We were trying to protect her from getting sick. But, we began to realize that we could keep her home and protect her from getting sick and keep her with us for as long as we could or, since we were beginning to feel like our time with her could be running out, we NEEDED to start taking her out with our family, enjoying activities together, making memories and taking lots of pictures…even with the risk of her getting sick. We are so glad now that we made that choice. We have enjoyed this last year with her so much. We have many memories, many pictures and we are so grateful for that!
We had a lot of appointments with different specialists during the first part of this last year. She was sick so much of the time. We talked about all our options of treatments that we could do for her. We could continue treating her with antibiotics but even they would become resistant after some time. We could have a tracheotomy. But the surgeon that could do that surgery didn’t think she was healthy enough to even survive the surgery. He talked about a brick wall that we were going to come up against and that there would be nothing that they could do for her once we hit that wall.
We had an appointment to talk to a surgeon about a back surgery for her. He walked into the room to see her and with out even asking us any questions about her, he shook his head and said there was no way he would feel comfortable about putting her through back surgery. He said he had never done surgery on anyone as medically fragile and severe as Kenzie at all and he didn’t think it would be wise to put her through the pain, and even if we did try, he too was afraid she would not survive the surgery. He then told us about the pain that she was going to begin to have because of how severe her back was. She was not going to be able to even sit in her wheelchair anymore because it was going to become too painful. She would become completely bed ridden and need constant pain medication. Despite this pain that he was describing would come to her, he still remained confidant that surgery would not be a good option either.
So, faced with all of these problems, and no reasonable options, we decided that it would be selfish of us to continue to try so hard to keep her here with us. She was not enjoying life anymore. We went and talked to our family doctor and told him that we were ready to stop treating her with antibiotics to prevent future pneumonia. It was such a hard thing to say. We felt like we were just giving up. But, looking back now, I know we weren’t giving up…she had been telling us, with out any words, that she was ready to return to her Heavenly Father. But it was still so hard to let her go. I wanted to be selfish and keep her here with me!
Once we decided to stop treating her with antibiotics, she was amazingly healthy for a while! Not that she was back to the healthier girl that we used to know, but she didn’t get really sick for several months. What a blessing! The hospice nurse started coming even though she was stable, just so they could start to get her baseline readings. We even went to Disneyland with her to make some more memories. But, shortly after getting home from Disney, she did get sick again. She fought it pretty hard for a while until it did turn into pneumonia and it became clear that this was the one that she would not be able to get past.
As the days came closer and we saw the signs of her body shutting down, we moved her into our bedroom and for days she slept in the middle of our bed. It was just after midnight on February 4th that she took her last breath. I had played this moment out in my mind so many times and never really knew exactly how I would react or feel. It is the most painful thing I have ever gone through. When I gave birth to her, it was painful; physically….but I had her to hold to help me forget the pain. Now that she is gone, it is painful; emotionally….except now I don’t have her to hold and I keep feeling the pain again and again. I do have comfort in knowing that she is no longer in pain and that she is happy. I also know that I will have her to hold again someday and I believe that she will be resurrected and when she is her body will be perfect and whole. That belief does bring me peace.
Every time I have received one of the Aicardi newsletters, the first thing I always did was to turn to the Memorial page and look for any letters that may have been written from the families that had lost their angel. I wanted to know as much as I could about the day that they lost their daughter so that I could prepare myself and plan in my mind how I would want that day to be. I know it may sound silly but, I didn’t want it to be hectic and crazy, I wanted peace and I felt that planning for that day would help me have more peace. I think it did, so I will share with you some of the things that I have read in the past and share how our day went and share what really helped me make it as calm and peaceful as possible. Once we realized that she had left us, I held her and cried, held her and cried, held her and cried. We didn’t rush it. We took the time that we needed. It helped us to play some hymns on CD so that we felt close to God too.
When we were ready, we bathed her. I took my time here to. I wanted to remember every moment. We dressed her in a beautiful white dress, white tights and slippers. We combed her hair and put white pretty things in her hair. We took about 4 and a half hours to do all this. When morning came, we took our four other children in to see her. We had her body laid out so pretty in her bed. We took a white glove (representing the body) and slipped one of the kids hands (representing the spirit) inside the glove and talked about how the body is like a glove and when Kenzie was alive her body could move because that spirit was inside it. But, when you slip your hand out of the glove, the glove just lays there and can’t move anymore. Just like when Kenzie’s spirit slipped from her body, it can’t do anything anymore either. But that the hand that came out of the glove does still live, just like Kenzie’s spirit still lives even without her body.
The other children have done so well. They have each mourned too. But, I think that helping them to know that they will see their sister again is very comforting to them as well. We waited several more hours before we called the funeral home to come for her body. We wanted everyone to have plenty of time to say goodbye. When they did come for her body we all gathered together and sang hymns as she left our home. It was such a tender moment for our family.
I hope that some of you might find this helpful to know what it was like for us. I’m sure I’m not the only parent that has worried about that feared day. I hope that you can glean from us what might be helpful to you. I am greateful to the families from the past that have shared with all of us. I know that reading about their girls has been helpful to me.
I was never very good about writing into the newsletter. I think I did write in a few times when Kenzie was very young. But, I have always appreciated the newsletter and the support that it provides for the many families that have such wonderful girls in their homes. Years ago, I called an Aicardi mom that had lost her daughter. I had hesitated to call her because I didn’t want to make her cry, but I did have questions for her; about a medication that they had tried for her. I finally got the courage up and called. When I identified myself, she did begin to cry. I thought, I know I shouldn’t have called. But she then told me that the reason she had cried was because when her daughter died, people didn’t know what to say, so they didn’t say anything at all and that hurt her. I’m telling you all that so that you will know that you would not need to feel uncomfortable about calling or emailing me. If you have questions, I would love to talk to you.
We will miss our little Kenzie angel. We are so grateful for the twelve years that we were able to enjoy having her in our lives and for all the lessons we have learned because of her. We are better people and a better family because she was in our life.