Sure I thought I had been through "a lot". I thought I was a wise girl and knew much about life. I was fairly comfortable in my beliefs and after all I had my life planned out on a real fancy spreadsheet. I was a Mom. I worked full time and went to school. I was in what I thought was a successful marriage and lets face it people-- We had made the 2 year anniversary mark so we were good to go for the rest of our lives... right? Once that little girl of mine got sick. My confidence and knowledge of life suddenly flew out the window.
I had no fucking idea what to do. and those choices that you say you would make... You know like when you hear of another family losing a child and you say... Oh I couldnt handle that I would kill myself.
What so many of us... INCLUDING ME doesn't realize is when you are actually in those real situations, you really will have no clue what you will do.
You know up until days before Makenzie passed I was certain we would do anything to keep her here with us. We put our house up for sale because we couldn't live in a 3 story townhouse with a child who was on a ventilator 24/7 and had tons of other equipment that needed to be with her at all times. We put Ryan's prized possession at the time-- his truck-- up for sale. We listed just about everything we own online and got in the mind set that we would do anything to protect this little girl and keep her happy and healthy for as long as we could keep her. We would do anything for her.
We talked to other families who were in similar situations as us. Families who made the choice to bring their little one home with a trach and vent. I found so much strength from them. I felt like they made the right choice and they were hero's in my freshly awaken eyes. Their children were remarkable. None of those families that I talked to had the same disease as Makenzie. It was good to know how their life worked with a child on a ventilator 24/7 but at the end of the day we had to take all that information we learned and evaluate it compared to Makenzie. There was only 1 other SMARD family that I had learned about and for whatever reason I never could quite connect with this amazing mama. She kept trying to touch base with me and we emailed but whether it was a doctor coming in the room or a test being done I never got to speak to her directly on the phone. I did read her blog and talked to other doctors about her and her amazing son that were familiar with this family. The doctors did their best to compare our children and see where Makenzie was compared to this little man. Of course there was never a certain answer with anything. They could give their opinions but like most unknown disease they really couldn't go off much. Each case is sooo different that there is no way to know if our Makenzie would be like this sweet little boy.
What we did know was what we could already see. Makenzie was very sick. She was sick for a while and I think because she had so many problems getting the nourishment she needed for those few months before she finally got her GTube she wasn't as well off. It was almost daily that we could see her losing more and more tone in her arms and especially her legs. When she was in the hospital she was not getting better. She was getting worse. It was a constant struggle to keep her happy and to keep food in her. She would throw up, she would have extremely large gas bubbles that wouldn't vent on their own and with all of those things they would stop her feeds. It would take hours and hours for her to settle and the moment we would try to feed her again it would all happen again. Over and over. I know there are other families that have this struggle everyday with their child and I am just amazed at them and how they can do it.
With all of that being said none of that was our reasoning for feeling like it was Makenzies time.
Life is hard. really hard. and we are all given trials that we may think we cant handle but in reality when faced with it, especially with your child, you do anything and everything to get the job done.
Ryan and I were not afraid of the task. We were not worried about how we could handle this. We were not worried about what our life would be. It was not about us. It was about our daughter.
Like I said that hospital gave me some new eyes. A different outlook on this life and it was very clear to both Ryan and I that this choice needed to be made by us but that it was not about us.
When I finally got the courage to take myself out of the equation (Ryan had already, he was way ahead of me on this) we knew what we needed to do. It wasn't a choice we ever thought we would make. It wasn't a life we ever expected to live. but here we were. Knowing this little girl that we simple adored. This little girl who was wrapped up in every ounce of our happiness, our hope, our love, our future was not meant to be with us much longer.
To know my daughters life would end. To know I would never hold her. Never kiss her. Never watch her grow. Never see that smile again for the rest of my life. That choice was not made lightly. That choice was not a choice I ever wanted to make. That choice was a choice that if I was on the outside I could never understand. It just didn't make sense. My job in life was to protect my child. To fight for her. I didn't know what the future would hold other than the little information that was online and the endless hours we spend talking to specialists who honestly couldn't give us a lot of information. We were not certain of Makenzies disease when she died. Her diagnosis didn't come until a few weeks later. but we knew she had some kind of neuro-muscular disease and that she was at the best she would ever be.
Do I wish my choice was not what it was? Absolutely. I wish her body was able to stay strong enough to take her home. That I could continue being her mom and that I could give my whole life to giving her the world.
Our situation is not one that we can compare to another. There are other kids out there that have the same disease as Makenzie and they are thriving. I cant sit here and wonder if that would have been her. Would she be that happy? Would she be able to do that? I just don't know. We had to go off of what we knew then and what we knew was right for Makenzie. Just like these other incredible families had to make a choice that was right for their child. and none of us choose the wrong thing.
Choices... Every one of us has to make them. and no matter who you are there really is no reason for you to doubt or question another for the decision they make. I'm sure if you haven't already learned you will learn one day that every situation is different. There is much more than what you think there is and you probably have no idea why that choice was actually made.
A few months back I had some not so nice comments left accusing me of doing some horrible things to my family. I decided at that time make it so all comments have to be approved before they can be viewed and that was honestly for anyone else that is reading this blog. I know what has happened in my life. I know why we made the choices we did. and just because I don't spell something out on this blog doesn't mean you can read between the lines because you really don't know what else is there. Over the last few months there have still been some comments left and emails received that ask why in the world we would have made the decisions we have.
Some people are honestly very genuine and really want to understand. Its something you cant really imagine and so they are curious. I don't mind that. I get curious too. but there are more that are not so much curious and genuinely want to know but rather pointing fingers wanting to make sure I know I made the wrong choice. I have not published the comments that are not so nice and I have done that because those people really don't deserve to have a voice. but my reasoning for blogging about this once again is because I am honestly
Get off your spiritual high horse thinking you know any more about life than the rest of us and telling people around you that they are making the wrong choices in certain situations.
You really don't know what is going on behind closed doors and you have no idea what someones relationship with God is really like. Please just focus on your life. There are certain opinions that don't need to be voiced.
There is a difference between wanting to understand me and demanding I understand you.
For all those emails or comments I might receive, that's fine. Thank you for allowing me to take up such an important part of your life. but please leave those comments and email to me. Don't share them with someone else because you don't know what they are going through and how they feel about their person choices.
I have talked about bulling before and I wonder if these people really dont understand that they are being bullys? There is more than just me that has heard some extremely harsh words from not only strangers but people we know. Other people who are in similar situations as me. People who have lost children and had to make really difficult decisions.
I am thankful I have had, for the most part, a pretty clear understanding about what has happened. The reason I am comfortable in it is because of Makenzie. She knew I needed as much reassurance as she could give me and she gave it to me often.
She was done.
She was tired and she was ready to be free.
There is absolutely nothing else I could have given her. I sometimes wish she was still here only for the reason that I could repay her for all that she gave me and continues to give me because it doesn't compare. She changed my life. She gave me the best thing in the world and she is continuing to stay by my side. Her life is beautiful now. and I wish I could look in her eyes and thank her and spoil her rotten for being so amazing.
2 days after Makenzie passed away Ryan and I were running around town. Finishing funeral arrangements, buying him a suit and finding an outfit to bury our daughter in. I remember very clearly thinking that I just couldn't understand how the world was still moving. How everyone was living life like nothing was wrong. Couldn't they see how sad we were? Couldn't they see that our daughter just died? It made me stop and think about how many other people are in that same boat. Maybe not the exact same boat but that they are going through something that would be so much easier if everything around them would just stop for a few god damn minutes. That everyone could stop their silly issues, that they could stop worrying about every non-important thing in life and just stop judging.
Everyone is going through something. Everyone is faced with a choice they dont really want to make in life. and No one deserves to
You cant really imagine what you would choose in any certain situation. You don't know what other people are going through and I hope we can all learn to be a little kinder and more understanding.