Signs

When Rylee was getting sicker, and the Dr's were not sure what was going to happen, the word death came up. It hit hard in so many ways but, instantly I thought I needed to let Karen and my family know that if anything happened, James and I wanted Rylee brought home to NY. We did not want her buried in FL. NY is home, no matter where we live and, I didn't want her to be alone. While we sat on the couch knowing our daughters life was coming to an end, I found myself second guessing what I wanted. I didn't know if I could leave her. I felt this way until we were at the cemetery. I needed signs, silently begged for them. I did not want my baby to be alone. We decided to go ahead and bring Rylee back NY. The thought of having her here was worse then leaving her in NY but, still looked for something to tell me this was right. I'm going to back track a little. In October while I was in the hospital with Rylee a close family friend suddenly passed away. I was heart broken for this family, for my parents who wouldn't leave us to be there. I received an email from Mr. Reardons daughter saying that his death had to have something to do with Rylee and that she whole heartedly believed he was another angel in heaven fighting for her down here. I wanted to believe this so much and if it helped his family to believe he was helping Rylee I was all for it. We needed all the angels we could get. I hated that it had to be someone we knew though, and that they were hurting so badly. Now to bring you to the morning after Rylee passed away. I was not taking phone calls. Friends of ours came over and fielded the phones for us. I was upstairs and Terra came up and she looked at me saying "I'm sorry but she won't take no for an answer, it's a Maryann." It was Mrs. Reardon letting my know that she wanted us to use Mr. Reardons car when we got to NY. We landed late into NY so we were not going to Locust Valley until the next day. My parents picked James and I up in Mr. Reardon's car and off we went to the cemetery. After talking about what we wanted we were taken down to an area that had space available. My parents decided to get a plot and James and I would need two. When we got to the area that we could choose from all of a sudden I started to listen to everyone saying " I don't want to be up the hill, I don't want to be in the shade, I want sun, I want some tree's" As I was listening to this all I said was "I don't want her to be alone" Everyone was looking were there was no one around. I knew James Grandparents and my Grandfather were in the surrounding areas which was good but it still did not feel right. My Dad moved over to another area and said "what about here?" then he walked over to see who she would be near and all I heard him say was "Oh my God, I can't believe this" My Mom went over to see who it was. She turned and looked at me and I said "who is it" her answer was "Tom Reardon" We just started to cry. Our baby was not going to be alone. There we were in his car at his grave site and he would be with our baby girl. That was our sign. Sadly, he did not pass away to be her angel on earth but he is her Angel in heaven. James and I took great comfort knowing that Mr. Reardon would be with her. We found out we could not put her right next to him because his son had bought the plot next to him but we bought the 3 plots after that.It was fine, he was close enough. I knew she was in the right spot, God and Mr. Reardon lead us there. My baby is NOT alone!

Heart in the clouds

I just downloaded this layout and although it does not look perfect, the name of the layout is Heart in The Clouds, PERFECT!!!

Displaced

Displaced is what I feel coming back here. I left here to go to caringbridge because I felt I was dishonoring Drew by writing most of my blog post about Rylee. Now, Caringbridge is not the right place either. None of this feels right. A lot of what I write will about the journey of life into death and what I'm going through but I will also write about Drew and what our family is up to. Thank you for following us and for all your support and prayers, they are what keeps us going each day.

One foot, in front of the other.

Not sure how much I have to give, not sure this will make any sense but here's what I have. We ended up in the hospital longer then we thought. Our 3 day stay turned into 7 and half days, yes, I count that half day, and so would you if you lived through it. Most everyone knows how Rylee loathes the hospital and Dr's. We spend many hours walking the halls, I mean MANY!! Everyone knows us. The TPN is in and as of right now we are trying to regulate her levels. So far her weight has not really changed, still not walking and she is just plain miserable. I miss her smile, laughter, spark, I ache for it. I fear that I will never see it again. The other night I found myself going through pictures trying to remember the last time I saw it. I can't even remember anymore. I cringe everyday that she cries in pain "mama owie mama hurt" One foot, in front of the other, that's all I can think about. She spends 20 hours a day hooked to a machine and 6 of those hours she is hooked to two machines. She has a tube out of her chest and stomach. Right now it's all a lot of work. Taking care of this is so much different then the GJ-tube. I know that we will settle into a routine, and soon it will feel like it's nothing but, right now we are not there yet, one foot, in front of the other.

Thank you to everyone who has been there for us:) We have gained many friends, we have lost some who we thought we were very close to us. It's amazing how many people change in your darkest hour. Those who should be there are no where to be found(if your are reading this it's probably not you so don't be hurt by this.) Thank you to our friends who have been putting food on our table every night since we have been home, for picking Drew up for school and asking for playdates with him. You all have made our lives so much easier. Thank you for just doing it because we all know how bad I am at asking for help. Thank you to the 3 south nurses, you are amazing. Love that we have had the same nurses for 2 years. Thank you to our amazing Dr's who have not given up.

Exactly what we needed:)

Yesterday was Drew's first soccer game of the season. He started off in goal. He did a great job. He is much more a defensive player then offensive. I see Daddy working with him in the goal in the near future. He will happily tell you no one scored the half he was in goal. It was pouring in the morning but the rain stopped in time for the game, thank God.

In the afternoon we went with the family and Stephanie to see Disney on Ice. My kids love anything Disney. I was a little worried about Rylee because when she's not feeling well things can go either way. They all loved it!! Watching their faces light up is priceless. Rylee kept saying "more ice" she didn't want it to end. She was clapping, laughing, sitting with all of us and in normal Rylee fashion feeding us. For 2 hours we had our girl back. I'm am beyond thrilled that we went. It made all of us so happy to see her like that, it has been a while. It was truly awesome and exactly what we needed. Drew was so excited when the cars characters came out. He loved it just as much as Rylee. Watching it through their eyes is so much fun.

A little chat about God.

Ever since my leg was hurt everyone would ask us "how we got through it?" Now that Rylee is sick we are asked all the time if we believe in God?How do you get through everyday? Don't we hate God for doing this?

I'm going to answer to the best of my ability how we feel about God. First off I do not believe God gave this disease to Rylee. God does good things, not bad. I do believe God chose us to be her parents. For whatever reason he thought that we had enough love, faith and ability to handle this in the best way that we can. I believe that he is there for us everyday. I don't believe that we could wake up in the morning if we did not believe in him. There is a stronger power that allows us to live and get through everyday, and that is him. We love when people prayer for her. There is nothing more powerful then those prayers. Dr's, medicine, food are all important but without prayer and belief there is nothing. I'm in no way a holy roller. I just have faith and this faith, good family and friends it what keeps our heads above water.

Anything but this. It's time:(

I want to write about what an awesome wedding James and I were just in or, about seeing most of our friends and family or, about Drew wanting to play on the big hill.

Not here to write about that though. I'm going to give an update about Rylee and Mito. I hate that mito is progressive. I hate that it has progressed. I especially hate that there is no cure. For a while Rylee has been on a downward slope. I wasn't to worried. I know that's how this disease works. We have been through a "crash" before. After 6 weeks she started to come out of it. This time though, she is not coming out of it. While we were in NY it became quite apparent that she is not well and she is not getting better. She has not walked in 6 weeks, barley gets off my lap and now can't even eat through the tube. Her stomach has stopped moving, she is in a lot of pain. When we could get her hooked up the food was coming back out the opening in her stomach. My baby is not well:(

Yesterday I took her to ACH to have her tube re-placed. They weighed her and she has lost more weight. Dr. W said it's time, there is nothing else we can do. Time for the TPN. My heart sank. This is the one thing that I have not wanted to do. All along I thought I didn't want to do it because of all the side effects. There are lots, and none of them are good. What hit me yesterday is that more then the side effects I don't want to do it because after this there is no alternative. This is our alternative. As long as there is no TPN there is hope. What if this does not work???? The up side is she will gain weight. One of my concerns is that when they take the TPN out she would just lose the weight again. She will lose it which is why Dr. W told me the TPN won't be coming out. TPN's are not meant for long term feeds. We have no choice but to take the side effects as they come and keep her on this for as long as we can. We are sad, we are defeated, we are in love with this precious baby girl and we will do whatever we have to. We are stronger then Mito and we will fight back.

The tube they put in yesterday is not working either. Monday Rylee will be admitted to put a central line in to start TPN.

Thank you to everyone for being there for us. We are so lucky to have a great friends and family.