Sunday, November 24, 2013

Thanksgiving Week 2009

Makenzie was very underweight. She was malnourished and needed to gain weight. We were told the best thing for Makenzie was to get the feeding tube out of her nose and put a G-Tube in. Since we thought she had SMA we knew this would most likely happen at some point anyway and its best to do it now. Help her now and be able to get her as many calories as we could now. We could feed her even when she didn't want to eat, at any time of the day or night. 
We met with the surgeon who was putting the Nissen and GTube in Kenzie. He was a younger doctor. He was so sweet and made sure I was comfortable with everything. Ryan wasn't able to be there but when I explained everything to him he was on board. It was scheduled for the next day I believe. It was quick but I cant remember exactly how many days after we agreed and it was done.
The surgery was 2 hours. It was so long. It seemed to take forever. While she was in surgery I may or may not have done anything to keep our minds busy and crawled into a child's car and got stuck. It made us laugh.

After surgery she was out of it but doing great. We were learning all about this new gadget she had. I was so glad they started teaching me how to care for it right away. We had to change the dressings twice a day and make sure it was clean and healing right. At first the G-Tube worked great. The nissen was placed so that she couldn't reflux anything. Since she was on a respirator it was important that she not be able to throw up.
Here is the post I wrote after her surgery.

I miss that perfect belly of hers. But I miss that button as well.  just miss that girl. Every part of her.

Surgery was on Tuesday and Thanksgiving was Thursday.
I was NOT interested in doing anything. I was not leaving Makenzie so no one should even suggest it.
Ryan's parents understood but insisted we do something. So instead of cooking dinner at their home. They went to The Little America Hotel which does an amazing Thanksgiving dinner. Its only miles form the hospital but it was not in her room so I was not happy about it. Ryan insisted we go.
I waited until the last second to leave. We rushed to dinner. Ate a few things. I tried to enjoy myself but I didn't see anything but a room full of happy families. A room full of people with the ones that matter most. and there I was. Celebrating my daughters first Thanksgiving with her laying in a hospital bed and I wasn't with her. It was the most sickening feeling ever. We were there 45 minutes. I gave Ryan the look and he knew we needed to go. I know everyone wanted us to stay longer but I needed to be with my baby. I told Ryan to hurry back. That I was ready to completely lose it. He pulled out of the garage fast and not paying attention and riped his side mirror off. Yes Riped it right off. It was great. He didn't even get out to look at it. He just sighed and sped off. We rush back to Makenzie and I felt horrible for leaving. We spent the rest of the day loving on her, reading books and telling her all about Thanksgiving.
My sister brought us dinner that night (a second Thanksgiving dinner) and it was wonderful. It tasted amazing. Probably because I was eating it in the hospital. It was a reminder that I needed to do what was right for me and my daughter and not what anyone else wanted. There are times you do that. but not on this moment. Not on that day. I should have done what was right for us.

This week was a week with big decisions. We knew Makenzie was very sick and there was a lot of changing we needed to make in life. We lived in a 3 story condo and knew we couldn't bring our baby home. She would be in a wheelchair at some point and I needed to care for her so I needed to quit my job. Both of those reasons made us put our place up for sale. We also listed just about everything in our house to help with money. I told my boss I wasn't coming back to work and to find someone new. Thankfully he said I needed to give it more time and that he wasn't going to do anything until we knew anything for certain. Ryan was busy taking down all pictures in our place, listing items on craigslist and getting ourselves ready for a big change. I did my best to research everything I could about insurance- what would and would not be covered. What our options were. The support we could get. Etc.
The doctors decided to try and extubate Makenzie on Saturday but ended not being able to because her chest xrays were really bad. I was so upset. I wanted so much to be able to hold her without tubes.

One of the worst things this week was on Saturday night. Ryan got a call from his boss at work. A guy they work with through a different company was on his way to the hospital. His daughters little boy was really sick and was being life flighted from Pocatello. I had never heard of these people but Ryan had. He was worried about them and went to check on them in the ER.
Their little boy was brought to the PICU just down the hall from Makenzie. He was very very sick. He had cancer. They didn't know until now. I wanted to help this family so much. I felt like I knew the ropes around this place and I could help baby Rykers Mum. We talked to them a bit in the waiting room but this was not a time to make new friends. We shared dinner with them one night but they were in a whole different boat than we were. Their sweet Ryker was declining quick. Every little update we would hear I was just sick about. I wanted so much to go hold this Mum and just be there anyway I could. They were so incredibly strong and I was amazed at how they held themselves together as the news kept coming fast. I would walk by Rykers room and was overwhelmed at what an incredible little boy I could see he was. He had such a light about him. I was overwhelmed with love for this little person I just met. We heard on Monday- November 30 that sweet Ryker passed. We went to give this family our love and support. We hugged Rykers grandpa but wanted to give them space. I went back to Makenzies room and remember so clearly leaning over her bed. Kissing her face. Praying for this family. Asking God to hold them close. and in the same breath. Thanking God for not taking Makenzie. For giving me a life with her. because I just couldn't imagine losing her.

Life in the PICU

We were so so lucky to have such amazing people rally around us.
We had so many friends and family members come by. To give us a hug. Bring us some treats. Give Kenzie loves. There was not a single day someone didn't come and see us. Even the days when we asked for no visitors that didn't keep people away. and not in a bad way. We were so thankful. Ryan's sister Brooke organized for people to bring us dinner every single night. Primary Children's cafeteria food is actually really good- but you can only eat it so many times. I rarely ate unless someone was there making me eat but even those times eating in the cafeteria got a little old so these dinners every night were nothing short of amazing. It also gave us time to be with people 1x1 for even a few minutes. I remember a few different days where I was only in the room with Makenzie and people would just take turns coming in. No one ever coming in more than once and it lasted all day long. Only 2 visitors per patient (including parents) so when Ryan was there he would hang in the waiting room chatting with everyone there and I would stay in the room with Makenzie. I would usually tell the same update/story over and over. Making sure everyone had the latest information. and of course all those machines were interesting. The PICU waiting room has 2 tv's, a fish tank and lockers. We stored a good amount of our stuff in our locker but we had to have a whole other locker for the goodies people brought us. It seriously saved us. People brought us cookies and chips, juice and crossword puzzles, Pepsi and Dr. Pepper, magazines and little games. Just about everyone brought Kenzie a gift as well. From pictures to balloons to stuffed animals. We have saved everything. I have a small chest of every card or picture given to Makenzie. I have also saved her stuffed animals and remember just about where each one of them came from. That is something Tracker and I talk about. When we got them and why and who they were from and that they are his sisters but she will share with him.
Ryan stayed at the hospital on the weekends and if he had a day off during the week but he went home when he had work the next day. That poor man. I don't know how he did it. He didn't have more than 2-3 days off work the entire time Makenzie was in the hospital other than weekends. My sister Jill lived with us (actually just moving in right before Makenzie went to the hospital) and she was soo good to take care of Harley when Ryan wouldn't come home. I never left. I slept on the pull out chair next to her every single night. and sleep didn't happen much. For me or her. I will never forget the sounds of those machines. The nurses were always so sweet and tried their best to not make a lot of noise so I could rest. They were always so concerned about how I was and if I was eating or sleeping. We were offered to stay in one of the rooms they have there in the PICU for parents. but its basically a closet with a bed. As nice as that was I didn't want to be that far from Makenzie and Ryan was not interested in sleeping in such tight quarters so the nights he was there he slept in the waiting room on the couches. Of course not getting much rest because people were coming and going. The pull out chair was only so big. It was a chair so there was no way we could both fit. It somehow ended up becoming rather comfortable for me. Or anything would have worked. I just needed to be with my baby.
Our family was especially amazing. My mom and Ryan's parents came up just about every day. I think there was only a couple days they didn't make it. There were days they took the whole day off to be with me. It was so good to have that much support. That much love. I cant imagine what they must have been going through. I know how hard it was for me to be the parent and to watch my baby in that bed. but I cant imagine watching my child (the parent) hurt that much and then have my grand baby the one on the bed. It makes my heart just ache knowing how hard it was for them.
We had visitors come that we hadn't seem in a very long time. Most had the best intentions and wanted to lend support but there were definitely those that just wanted to come for the show. Its so sad to look back now and see that. At the time I didn't see it but I see it now.
I was told this by someone who had lost a child while Kenzie was in the hospital that we will soon learn who matters in our life because when the worst happens its like a car accident. Everyone is slowing down and wanting to take a look but as soon as they pass they go on with their life and never look back. We have unfortunately seen this many times. People being there for the accident and they soon move on and never look back. Its so sad and really hurt Ryan and I. but it also made us so thankful for those that stayed. Knowing they are ones that will be here forever.

Primary Children's is just amazing with doing everything they could to take care of their patients and families. Makenzie "won" bingo prizes just about everyday. Never did we play but she always got something. A toy or blanket were the most popular. It was always a fun treat and one we didn't take for granted. For everyone of those items were donated by some amazing people in the world.

Right when Makenzie came into the PICU I started putting her leggings on her everyday. I had Ryan bring me every one of her pairs so I could switch them everyday. It didn't take long before this little trend became known and doctors and nurses would stop by just to see what pair she was wearing. I usually tried to match her bow with the leggings but she didn't always wear a bow. Thank God for those leggings because those rooms were freezing.

We made some amazing relationships with some of the staff. There was an overwhelming amount of love from everyone that walked in that building.
Out of who knows how many doctors and nurses and respiratory therapist and anyone else that was around Makenzie. There was only 2 nurses that we had to ask never to get back again. and it wasn't that they were great- but not for this uber controlling Mum. I am sure I was crazy in many eyes but I made it a point to be as involved as they would let me. I was her Mum and I wanted to feel it. There was so much I couldn't control or do with her that anything I could do (like change diapers) I insisted I do and wouldn't take no for an answer. I also needed to understand as much as I could. I didn't want to just accept what they recommended. I needed to know why. and honestly because of that- I knew more of what did and didn't help Makenzie and I think I helped not let things happen that were unnecessary. Such as the MILLION IV's blown. I know she needed an IV but she also needed breaks when every vain in her hands, arms, feet and legs were blown.

I never felt so young as I did when we were in the hospital. Mainly because I was mistaken as not being Kenzies mom by anyone that didn't know us already. There was more than once that they would be talking to whoever else was there that day instead of me and I had to tell them that I was her Mum. Ryan and I kind of thought it was funny because he didn't worry about shaving while she was there and he looks older than me anyway but looks even older with all his hair so me (not wearing much makeup) and Ryan looking all old. They probably had some interesting conversations about this crazy couple.

They had a public shower in the PICU waiting room. I would shower every morning at the first shift change. There was only 2 times I didn't get to the shower before someone else. I used that hour to shower, get ready and maybe grab a granola bar out of the locker. I was not interested in going any further than that or being gone any longer than needed. They make you leave at 7am and 7pm so the nurses can switch and give the update to the next nurse without the parent being in the way. They can also get acquainted with the patient and start in on their day with minimal interruptions. I understood why they did this but I hated leaving. The last week of Kenzies life they stopped making me leave. There were even times here and there that if by chance I was still sleeping at 7am (those nights I was up all night with issues Kenzie was having) they didn't wake me and they let me sleep but those days stressed me because then I felt like when I did leave her I was neglecting her and leaving by choice instead of the rule. Some of those days I ended up not showering and looked even worse than normal. The shower was actually not that bad. I think back and it grosses me out. There was a lot of random hair in the floor drain. but in the moment I didn't care. I didn't care that I was surrounded by several other parents shampoo bottles and i was standing naked where someone else just stood naked. It was a nice place for us to get ready. That hospital- really made it so much better for us.

To get into the PICU you have to be approved. You first call a phone number and get paged in. They soon knew who I was and I never had a problem but everyone else had to check in and get visitor tags.

Saturday, November 23, 2013


It was a day or 2 after Makenzie was taken to the PICU that Dr. Swoboda came in to do some tests. There was a couple other people with her. One of the ladies looked like Christine off Greys Anatomy. That lady was the one that did most of the tests while Dr. Swoboda observed. They did an EMG and nerve conducting study with repetitive stimulation. I remember holding Makenzies hand and kissing her face while they did this test. It was not comfortable for her and she wasn't happy about it. I remember the test seemed like it took a while but I think it was only an hour or two. These tests helped identify muscular diseases, motor neruopathies and other neuromuscular disorders. After the EMG was done they did an SMN gene deletion test. They had to draw blood from the very inside of her hip/thigh. It was done with a giant needle and it made me sick to think about that in her. I sang to her while they did it but she was obviously in pain. I hated when she would cry because there was no sound. Just her face and tears. It was worse than any cry I have ever experienced. The results for this test usually took anywhere from 3 weeks - 3 months to get back. Dr. S. said she would try to speed up the process but it would take a while before we would know anything. Testing in the US was new. Its only been offered here in the last 6 months and only in Europe before that. The lab was in another state and they only did the test when they could test more than one at a time so they had to wait for another person to get tested for the same thing which is why the window was so open for when we would get the results.
Both my Mom and Ryan's mom came while they were doing these tests. We asked them to wait in the waiting room until it was done. After they were done Dr. Swoboda immediately had us sit down. We sat on my chair/bed thing. It was a tight squeeze. but we sat there next to each other. Dr. Swoboda sat across from us. She didn't waste anytime telling us what she thought was going on and what was wrong with Makenzie. I was not sure exactly what she was saying. but I remember repeating over and over in my head SMA. She kept saying those letters over and over. She said what it stood for a couple times and I tried to remember those words. Spinal Muscular Atrophy. I couldn't understand most of what she was saying to us as far as the medical side so I knew I was going to be rushing to the computer as soon as possible to do some research. She told us that SMA has different types. That they would not know what her type was until she either did or did not reach certain milestones. She could live a semi-normal long life. She maybe in a wheelchair and unable to walk but she would be alive. but the fact that she was already showing symptoms and weaknesses and that she was rather progressed in not having a lot of mobility in her legs led her to believe it was SMA1 but that there was no test that would tell us for sure what type she had so we would just have to wait and see.

After Dr. S ended our conversations assuring us she would be back tomorrow she left. Ryan and I sat there for a few minutes before we got up and went to Makenzies side. I remember so clearly looking at her. Kissing her face. Then turning to Ryan. I just lost it. I grabbed him and he held me up. I was shaking and my legs felt like they would give out at any minute. I told him over and over that I cant do this. I don't want to do this. I just cant do this. Its not fair. I don't want her to be sick. The Mum on the other side of the room left (she might have been a wee bit afraid).
Ryan told me to stop. That I needed to calm down.
At the time I was a little upset with him.
but I needed that.
It was not time for me to fall apart.
We had a very sick little girl in the bed next to us who thankfully was still alive.
Ryan told me that we could do this. That we were doing this. That its not just me. and that we needed to focus on Makenzie and not on us.
I needed to focus on what we had and what was to come instead of what we didn't or the unknown.

After I put myself together we went to the waiting room to talk to our Mums who were anxiously waiting. They were pacing the halls. We did our best to tell them what we were just told. So much of what Dr. S said went right over our heads but we did remember SPINAL MUSCULAR ATROPHY.

That evening during the shift change I went upstairs to the public computer. I updated my BLOG and I spent the next 50 minutes learning everything I could about SMA.
I had to be gone for a hour during shift change and I didn't spend anymore time than I had to away from Makenzie.
That night her nurses finally answered my prayers. What did Kenzie love more than anything? Water. Her baths. So thats what we did. Those amazing nurses figured out a way we could give her a bath. They said this never happens in the PICU. Lucky for us our baby was small enough she fit in the "barf bowl"

Monday, November 18, 2013

The next few days... Nov. 2009

I should have taken more pictures of her life.
I should have taken more pictures of her in the hospital.
The last picture I took of her before she went to the hospital was this.
The next picture I took was this one.

A difference of almost 5 days. From Monday night to Friday or Saturday.
I have a hard time remembering everything that happened during those days.
I do remember we were on the 3rd floor for only 2 days. I remember not leaving her side and unlike in the PICU where I had to leave her twice a day while the nurses switched shifts I didn't need to leave her here. I remember I got breakfast off the cart they had come around in the morning and Ryan had brought me some food when he came after he got off work. Other than that I didn't eat. The majority of the day was spent going from one test to another. From one machine to another. Hearing from one doctor to another that they were stumped. She was on oxygen and kept having to up the amount she was getting. She was getting worse. Her body was failing and no one knew what was going on. I don't remember the nights in that room. I don't remember how I slept or where I slept. I did hold Makenzie a lot. She was on oxygen but I could still pick her up and hold her as I please. Little did I know how that would soon change. Those oxygen wires were enough to drive me mad but they were nothing compared to what was to come. I remember we had people come visit those days but unfortunately I don't remember who. I don't remember how long they stayed or if they brought a present for Makenzie. I wish I could remember. I remember the day Dr. Swoboda came into her room. I was alone. Makenzie was really bad at this point. I was holding her when she walked in and asked if I would lay her down so she could observe her. I remember Kenzie immediately started going into distress. I kept trying to get closer to her because I know she just needed me. I could always calm her down and help her. Dr. Swoboda was observing her and doing a couple tests or something. There was probably 2-3 other doctors in the room, a few nurses and Dr. Swobodas assistant.
Dr. Swoboda didn't ask me many questions. I assumed I would have to say the same story that I have told about a billion times already to her. She didn't ask me much. I kept looking at Makenzie who by this point was crying but not making much noise as her vocal cords were paralyzed from the surgery she had a few weeks before. Her stats were dropping and she was arching her back so much while laying on her side gasping for air that her head was touching her back. Literally. I had never seen her that arched before. I was sick. I tried to move and I tried to do something. All while trying to listen to what Dr. S was saying to the people around me. I remember hearing that she was crashing and they needed to drop everything and get her intubated and to the PICU now. I didn't really understand what all that meant at the time. I was kind of moved out of the way as many more people came in and started to unhook all the machines. Dr. Swoboda didn't leave Makenzies side. She said something to the effect of I know you don't understand this and ill explain it to you when I can. She then continued shouting orders. She was not talking as quietly anymore. Another doctor came over to me who I'm sure saw the look on my face and explained to me that my baby couldn't breath and they needed to put a tube in her mouth to breath for her. That she would just need it until she was stable and they could figure out what was going on with her. A caseworker came in and grabbed my bags. I called Ryan who was off work and had just grabbed some food on his way up to the hospital. 
I swear I had to tell him all the bad news over the phone.
I followed her bed. Still trying to get close to her but not being able to because of everyone that was around her. I was lead by a few other doctors and we went down a floor into the PICU. I remember walking in those double doors. Walking past those kids who were hooked up to a lot of machines. Seeing a parent or 2 sitting next to their child's bed. It was an extremely sad place. but also one that gave me a lot of comfort. I felt like she was going to be okay. They would know what to do with her here. We were taken into a shared room. There was a little boy who had obviously been there for a while. He had a lot of things on the wall and toys, books and signs all over. His mom jumped up to come say hi. As if I was her friendly new neighbor on Jane street. I don't remember if I even talked to her right then. I was to focused on figuring out this place. What was happening and being introduced to a whole new team of doctors and nurses. I was surprised to learn Makenzie would have a nurse in her room at all times. That this nurse was just for her. That this nurse would only be watching Makenzie. 
I remember stopping the pull out chair which I knew would be where I would sleep.
Ryan came in a few moments later. Doctors were exchanging information. Makenzie was doing a little better. Everyone was surrounding her. Another doctor came over to us and asked if we could step out for a bit until they got everything in order. She said for us to go get some food and come back in like 20 minutes. She said they wouldn't do anything with Makenzie until we were back but they needed us to step out while they got her settled into this new area.
Apparently when Ryan got the call from me he sped here rather quickly and didn't bother to park in the parking lot. He left his car on a curb out front. So he went and moved his car and brought in the food he had just picked up. We sat down in the cafeteria. Neither of us saying much. We didn't even get a bite before we were paged over the intercom. Ryan and I both jumped up and ditched our food as we rushed back to Makenzies room. I was nervous but Ryan was in sheer panic. He still talks about that moment. He says that was the worst moment out of everything. We rushed back to her room and they explained that they needed to get her intubated right away and we needed to sign the consent forms. They again asked us to step out while they intubated her. This time we just stood outside her door. Another doctor came over. She knelt in front of us and just talked to us. Tried to explain what just happened and what they were going to do now. In the middle of her talking to us someone said we could come back in. We jumped up and rushed to Makenzie. They had given her some medicine-- don't remember what-- but she was out of it. She was kind of awake but not really. I do remember very clearly. Standing next to her bed. Lowering the side rail and placing my hand on her belly. 
Ryan and I looked at each other and we both thought the exact same thing without even saying a word. It was the most horrific sight yet the most amazing at the same time. Her belly moving normal. We didn't realize how bad it was until we saw how it should look. We saw her skin hanging from her body. She had lost so much weight that her skin was saggy. When she would breathe before this moment she would suck in her stomach so much it was almost completely compressed. We hadn't seen a belly on her in so long. I stood there and cried. I was angry and happy at the same time. I was angry I didn't do more. I was angry I didn't push harder for her to get help sooner. I was angry I didn't realize how bad it was. and then I was happy she was finally able to get some relief. 
That moment continues to make me physically ill. I cant get that image out of my head. Her belly.
I don't remember much from the rest of that day.

Sunday, November 17, 2013

November 17, 2009

Yesterday was our anniversary. 7 years. Ill write more on our anniversary later. It was a good day. I love my husband. He is so good to me. but every year the same thing happens on our anniversary. everyday for the past 3 years. Our anniversary was the last day Makenzie was in our home. It was the last day she was free from wires and tubes.
4 years ago was the beginning to our end.
Since the Laryngomalacia surgery she had at the beginning of the month I had been taking as much time off as possible with needing to go back to work and having Ryan stay home one day, a good friend watch her another day and finally it was today that my Mom got her. She had never babysat her before.  It was the first time. She came over to my place so Makenzie could be in her house, in her bed for naps and get as much rest as possible. She was not getting better since the surgery. She was getting worse. I had already taken 3 months off for maternity and had only been back a little over a month so I had to go  to work. I left my mom with strict instructions on how she should nap. What to dress her in. What she should and shouldn't do with her... etc... I look back and still think how silly I must have sounded to my mom who has raised 10 kids. but she listened and she assured me she would take good care of my baby and would call if there was any problem.
I was busy at work. Trying to complete a million different tasks. My mom called and said she took her over to my sisters house who lives down the street and they noticed Makenzie was turning a shade of blue. It wasn't really obvious but it was noticeable. I asked a million questions and hung up with her. Immediately I started to panic. This weird color she was turning was not new. I had already addressed this with the doctor that did her surgery to which he continued to tell me was normal and she was fine. I felt like I shouldn't continue to over react. I was doing plenty of that for the past 2 months. I had taken her to the emergency room several times. She had a few over night stays at the hospital. We had thousands of dollars worth of test ran and everything was normal. I knew something was wrong but because I kept being told she was fine I second guessed every feeling I had.
My sister called me not long after I hung up with my mom and said she really was concerned. She said if it was her kid she would take her in. I immediately went to my boss who told me to leave and figure out what was going on. I asked my mom to met me half way so I didn't have to drive the 30 minutes all the way home. I knew I needed to take her to an ER. and no the children's hospital because I know that if I took her to any other hospital they would want to transport her to the children's hospital and if we arrive via ambulance she would be seen much quicker. I decided to take her the ER that was in the same hospital as her pediatrician. I called her pediatrician telling her my concerns and asked if she could see Makenzie. She told me she was booked but she could fit me in the next day. I told her I was already here and in the ER and if she wouldn't see Makenzie I would continue to take her to the ER. After a few minutes she told me to come up. I walked from the ER up to her office. I don't know why this sound is so clear in my mind but I can still hear the sound of my heels as I carried her in my arms. Wrapped in a blanket through the halls. I got a little lost which seemed to take forever to get to where I was going. I kept looking at Kenzie and kissing her face and telling her that I love her. Her color was slightly off but it was not really noticeable but it was clear to me that I couldn't take "she is fine" as an answer. I needed to get her help. I got to the office and was immediately taken back. She hooked Makenzie up to the a pulse ox and right away her stats were in the low 70's when they should be no lower than 90's. Within minutes they changed their "she is fine" attitude and started hooking her up to oxygen and figuring out a way to get us to Primarys. Ryan got there right as the ambulance was loading her up. They put her in her car seat and strapped her car seat to the stretcher. I road in the front seat. The driver tried to make small talk to calm me but it didn't work. I kept my eye on Ryan who was following in the car behind us.
We got to the hospital and were taken behind a curtain. I was so thankful that they didn't treat her like she was "ok". I look back now and understand why they didn't but I was so used to the waiting, not seeing anyone, having the "you are a paranoid parent" look that this quick pace, several people in the room helping my baby was refreshing to see.
We were asked a million of the same questions we have been asked time and time again. We explained when and where and how all of the symptoms started. We explained our concerns and worries.
Tests were ran and we were there for a long time.
We were told Makenzie was not getting better and it was clear something was wrong and she needed to be admitted. We called family. Asked for a change of clothes. People offered food. and we were sent to the 3rd floor.
We got to the room and I tried to make it comfy for us. Not having any clue how long we would be there. Maybe a few days? Thinking it would be fixed. Whatever it is. and we would be fine.
She would be fine.
She was getting help.
That night I was thankful that she was getting help.
That she was bad enough that they took her serious.
I prayed.
I prayed a lot.
That night was rough.
I don't remember everything. I don't remember sleeping. I don't know what I did or who was there.
Those damn details are slipping away.
The things I remember are clear. but so much has gone away.
I wish I remembered it all.
I wish I could really relive it to really know everything was done right?
I will write more. I need to remember.
Lately I have been having such a hard time knowing I don't remember as much. That I don't hurt as much. You would think that after hurting like I did I would be happy to not have that pain. I don't. I even said it then. That pain is the constant reminder of her. Its the constant that I had of keeping her in my life. I am thankful for my son. For the wounds he healed. For filling my days and nights. For keeping me so busy with his mischievous behavior that I honestly don't have time to really miss her like I once did. I am thankful for him. but I do miss it. because at the end of the day. When we are saying prayers. When its quiet. I am reminded that I didn't spend the day with her on my mind. I lived. and that is a constant battle. The guilt. The happiness. The healing. The pain.
Its overwhelmingly painful.
All of it.
I need to write more of her. I need to dig out some of these memories. To remember more. To feel this pain. To live in this pain. and it wont make sense to many of you. but if you have ever lost. If you have lost a child. You get it.


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