Saturday, May 26, 2012

Choices

Life is sure full of choices... Some are choices we would rather never make in life but are faced to do it anyway. Up until Makenzie got sick I was always one to try and put myself in someone elses shoes. I seemed to always have an opinion on the matter. I would always have a... Oh I would never do this. Or a if that was me I would make these choices different... It wasn't that I felt that person was necessarily making the wrong choices but I just didn't always understand their reasoning and felt I was oh so wise and would make better choices... You know because I know everything and all. and I say I did that until Makenzie was sick because that was the biggest moment in my life where I realized I know shit about anything.
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 asking begging all of you out there to please stop judging.
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.

32 comments:

caseyp said...

Beautiful post!!!! I know MRW is so appreciative of you and your choices.I pray that these jerk face, self centered,high horsed,horrible people never have to make life choices of this magnitude. Please know that you have soo many people behind you encouraging you and rooting for you and your future family!!! You and Ryan are true inspirations to me... xoxoxo

Alissa said...

You are such a sweetheart, and your family has been through so much. I still pray for you guys all the time! I can tell you are so full of love as Kenzie's mom! I've had to make difficult decisions too, at the time I definitely was not happy about those choices, but I knew they were right for my family. I beg people to not judge too. Hang in there, I can't wait till your little man is born, yea!

Alissa
ripleyadoption.blogspot.com

Blogger25 said...

I wish people knew when NOT to say something. Didn't their parents ever watch "Bambi" with them and teach them Thumper's infamous quote..."IF YOU CAN'T SAY ANYTHING NICE DONT SAY ANYTHING AT ALL." I hope those people read this post and realize what they have done.

The Dean's said...

This is such a beautiful and honest post. I remember being judgmental and thinking I knew it all and had all the answers, BEFORE I had a child. Now that I'm a mom, I see things in a whole different light. I had a very difficult pregnancy and almost lost our little boy a couple of times. It wasn't until I was starring our situation in the face that I was able to see things in a totally different light, completely different from what the "old" me would have thought or done. Not everyone understood our decisions and decisions we have to make about future pregnancies, but we are doing what is best for us. I was so guilty of feeling that my opinions were justified based on beliefs whether they were religious or political, but actually living through some hard times has opened my eyes and while I wish I could have had a "normal" pregnancy without the the fears, tears, and what not, I think I am a better, less judgmental, more open to new ideas type of person because of the trials. I am so sorry for the harsh words and bullying you have experienced. It is sad that they feel they need to interject their opinions onto you. You are strong and such an inspiration. I wish all the best for you and your family.

Melinda

Jeff and Brandi said...

Very well said! Not only do I work in an ICU and see families have to make difficult decisions so frequently, but I also had my first child at 28 weeks and we spent almost 4 months in the NICU. It is so horrible to watch your child suffer. We were lucky and still have our little guy with us with a few gastrointestinal issues and a G tube that we deal with. It's unfortunate, but I have learned in these last 4 years that there is always someone that is going to judge the choices/decisions that we make. If people would just worry about their own lives this world would be a lot happier! I recently started reading your blog and have loved your willingness to share your feelings and journey of your fmaily. I'm so excited for your little man. What a lucky guy to have you two for parents!

Amanda said...

One thing I would tell my students is that 'sticks and stones can ONLY break bones; words can shatter the soul'. I'm sorry to hear that anyone would send you any comments or emails that are less than respectful and supportive.

Brittney said...

Very well said!!! It is unfortunate that people judge others, I firmly believe it is because they are consumed with fear. I completely agree with you that people have no idea what they would do until they are in that position. I will admit, I judged so many mothers before I had children of my own and now I understand...sometimes your day is so busy and crazy that things happen, out of your control, and it does not mean your a horrible mother or anything else. I used to hate it when I would see people in Wal-Mart with their toddler in a diaper, I used to think it was so trashy. UNTIL, that is I pulled into wakmart on a busy day and my son had pooped through his diaper and all over his clothes. I had a diaper but not a change of clothes...what mother in her right mind is going to drive all the way home just to get a pair of pants and then drive back to walmart...not this mother. I changed him and walked into the store with my child only wearing a t-shirt and diaper and I smiled and how quick I was to judge those other mothers.

Simply Shannon said...

Yes to all you said! We all have our burdens, pain we wouldn't wish upon anyone. Yet we keep moving forward, backward or sideways. No one can know the pain you feel from losing your child, not even others who say good-bye too soon. Every loss is profoundly personal.

Rafahi Family said...

Oh I wish that people would listen to you! If they would take this advice to heart, there would not be so many rude, ignorant people out there! This post is just great, simple and honest. I love it! Can I ask you--in the photo of Makenzie @ 3 months on your blog. She is wearing a white headband with a blue flower. Where did you get that? It is just so adorable!

Carolina said...

It's very interesting to me how some people can be so downright RUDE in the name of "religion" or "spirituality" without even thinking to put themselves in someone's shoes for a second. You would think they would stop bothering you, especially after you started moderating your comments, but some people seriously have no decency and no consideration towards a woman who's gone through so much and is PREGNANT. Do you have any idea what it's like to be pregnant and STRESSED out and hormonal and emotional?! STOP IT! It's not your place to judge someone that has lost so much especially when you have no idea what it's like to be in their shoes.

Sherry said...

Just had to add my two cents :)Very.Well.Said.

SJW said...

I know you have a ton of people who ready your blog - me included. Maybe you should post some of the comments, so me and everyone else can go to those assholes blogs and exercise our right to free speech. When dealing with a bully, sometimes you have to go and get an even bigger bully to kick their ass! Yeah, I'm immature; I could say, 'turn the other cheek' or'ignore them'......but whatever happened to just a good plain ole, 'FUCK YOU!'? I'm just saying.

Jackie Koll said...

Great post. Some people make themselves feel better by hurting others. I find it so sad that they would say things to you about your choices - you absolutly did what was the best thing for your family and I, for one, have never thought anything else. I cannot imagine having had to walk the road you walked - my God continue to give you grace each day and hope to face tomorrow.

Auntie EM said...

Such wise words, Kendra. Life is hard enough without someone making light or making judgements about our choices. All of us, at some point in our lives, will make choices that will change us forever, make us question everything. Maybe some haven't had to make those hard choices yet but they will. Until then, I too hope others will just stop judging and try to be more understanding. I hope I will do the same. Many who comment on your blog seem so sweet and understanding. It makes me smile when I read their comments which are so kind and uplifting. But we know some people have to give their opinion no matter who it hurts. We are entitled to our opinion but we are not entitled to hurt or judge in a negative way. I love Kenzie. I miss her. She is part of us and she will always be my niece. You and Ryan just live your life the best way you can and make the choices that are right for you. There will always be naysayers, people who will say mean things, but pay them no mind. You are strong and you are doing what is perfect for you and Ryan is right there supporting you all the way. I love you Kendra. Hang in there and remember what a wonderful mother you are and will be with your little guy. He will bring smiles to all of us and I for one can't wait to see him, hold him, and love him. Love Aunt Mary

Jocelyn said...
This comment has been removed by the author.
Jocelyn said...

I have blog stalked for a long time but will comment now. I love this post. We really do not know WHY us as humans make the choices we do. We each make them based on who we are and the experiences in life that we have.

May you have peace from those who are not so kind. I am SO happy for you to have a new little one to love and hold. Enjoy him and all he will bring to your family.

Trinity said...

I am unsure at this point how I even came across your blog. However, your blog is amazing and you are an amazing person. I cannot imagine being faced with some of the 'choices' that you have personally been faced with. It seems from your story too that your daughter had the same choice in mind. I read that her tube fell out hours before you had decided. I truly think you were blessed and being prepared for that day to deal with it as best as possible. I am so grateful and humbled to read blogs such as theis. Your story is inspiring. It helps me to want to be a better mother to my boys and to take each day in moments and understand that each day is a gift. Thank you for sharing your thoughts. If it is okay I would like to share your baby legs project on my blog and possibly facebook? I just felt really inspired by your story and would love to help you get as many baby legs as possible. It is nice too because I feel like I can do something locally. I worked in the medical field for a few years and my husband will be a paramedic by the end of the year. I have seen how little gestures make a large difference. Just let me know where to send all the items to be donated. I started with buying 7 pairs to make and my sister in lawas want to help out also. I am hoping to get friends and neighbors to help out as well. Thank you again for sharing your story and inspiring others. -Trinity

Trinity said...

If it works better you can email me at trinitypowell@gmail.com. If you would mind not approving this comment I would appreciate it. Don't want everyone to know my email. :) Thanks.

The Little Martz Family said...

Well said. I am so sorry that people are so insensitive and cruel. For me you nailed the message that I have been thinking a lot about lately, "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." Your blog has changed me. Your honesty and vulnerability has made me into a better mom, friend, wife, and over all person because YOU with the help of Makenzie has reminded me to stop for a few minutes and focus on what is REALLY important. Every night I check your blog. Every night I cry. Every night I thank God for my son and then I sneak into his room and give him a thousand kisses and tell him that I am thankful for him. So, for every bullying comment made to you, PLEASE know that you have changed not only me and my relationships with my loved ones around me, but your words have changed hundreds of lives for the better.

The Mueller Family5 said...

It's so unfortunate that there are so many people in this world that judge the actions of others. It is even more unfortunate that many of these same people raise children to be the same way. I can't understand how anyone can look at your situation & blame you for making the wrong decision for you little girl. I hear your story & read your posts and only feel your sadness. All I want for you & your husband is for you to find some true happiness. I am so excited that you are having another baby! So, be happy to know that there are so many of us out here who do genuinely want good things to happen to good people :) Forget about all the other stupid, ignorant other people! They need a life of their own!!!

~Erin said...

Wow. Amen to you. I applaude you for sticking up for your family.

Stefany DeLorme said...

You and your husband are two of the bravest and least selfish people I have come across. You are a wonderful mother who did what was best for your baby. I truly hope that you dont ever let someone's comments make you second guess a decision that was right for your family. I wish you the best of everything.

Jane said...

I'm so sorry that anyone has been questioning your choice and judging you. I can't imagine having to make the choice you two did. Especially to feel the love in your blog then try to second guess...I don't get it. But you hang in there and keep blogging. I love your blog, I'm always inspired.

Melissa Medrano said...

What a great and beautifully written post. Praying for ya'll

Ryan,Erika,Kaylee and Khloe Pettersson said...

What a beautiful post Kendra. You are such a good example to so many. I'm really glad that you are so strong and confident in the choices you have made that mean and judgmental comments don't bring you down. Although I am one that will hopefully never understand how can one make a decision of taking their child of life support because just the thought of how it has to feel shatters my heart in million pieces, I admire you for putting your daughter before yourself. Because that's what motherhood is all about. You put your kids and what's best for them before your own needs an wants. I don't doubt that you did the right thing. Not for you or Ryan, but for Mackenzie. You truly are an amazing example of selflessness and love and I'm beyond happy for you to welcome this little boy into your family and life. Love, Erika

Maxie's Mommy said...

I have wondered if there aren't just internet jackasses that troll the web looking for bereaved parents to lecture and insult. Like our grieving, our pain, our guilt and our longing aren't punishment enough - we need these assholes to write us and tell that the way we handled our children, our handling our lives without them, and our grief aren't the RIGHT ways to do it. THEY know better! At first it hurt me and I started moderating comments as well. Then I started feeling protective of my readers (especially my family members who were reading). What you wrote here is beautiful. You did everything you could. There are no right answers. I had to take my sweet boy off life support and it was the worst effing moment of my entire life...and I am sure it will haunt me for the rest of my days. I can't know where you have been...but I have been somewhere similar. For those who haven't been where we have, they are lucky that they will never know. unlike others who hope they will never have to experience the pain we have - I sometimes (against my will) do have fleeting hopes that those who sit in judgment will have to experience it. Then, I will be first in line to judge them right back.

Lisa F said...

You're a star, Kendra!

Lisa F said...

You're a star, Kendra. I've always loved most about you your courage!

Jen said...

Very well said. Although I have never been through something like that, I can't imagine having to make that choice, and even more so, I can't imagine judging someone who was in the position to make that choice. Shame on those who make ignorant, nasty comments. I don't know you personally, but from your blog I can tell you are such a loving momma. All I can say is, karma is a bitch. Hang in there, and good luck with the rest of your pregnancy! I have an almost 9 month old son, and little boys are wonderful! xoxo Jen

Brynnie said...

I will keep this short and simple. I LOVE THIS POST!!!! Well said and there are many who need to hear it. You never know how strong you are until being strong is the only choice you have!!!!!!

Mary Jane Ven said...

I think you are beautiful, loving and strong. When I first read your blog, I too was trying to understand why? But you are right, until you have walked in that person's shoes, you don't know. The choice you made was an unselfish act--you put Makenzie first. I get it now. I am so sorry that you have to "explain" yourself to complete strangers. I am a mother of two and I don't think it was an accident that I came across your blog. You are teaching me to be a better mother and to not take my kids for granted. Thank you for sharing such personal part of your life. I believe that these blogs are a great way to spread awareness. God bless you.

Ginger Benedict said...

Thank you Kendra. I have been through some tough times in my life. And have faced criticism similar to what you face. My oldest son is 17 years old now and has muscular dystrophy. He has become so weak this year that I know we will face some of the same decisions you and your husband have already struggled through. I do not want to lose him but I know his quality of life fades with each decline in his health. Thank you for sharing your feelings. You have helped me. I will be praying for you and your expected baby. Miracles do happen, I have a 7 year old miracle who is free of the muscular dystrophy.

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