feeling sad tonight

It's 12:56am and I really should be in bed, but I found myself missing Scarlett and wish I could be holding her right now. But since that isn't very possible I did the next best thing and that was to look at the pictures  we took of her these last few days.

Today has been somewhat of an emotional day for me. As I sit here with tears in my eyes, I just think life is really unfair sometimes. Scarlett is not expected to live very long. Maybe a year, or maybe just a few more weeks. It all depends on how quickly the disease progresses. I don't want Scarlett to die. I wish somehow this was all a dream and I could just pinch myself and wake up. But I know that isn't going to happen. My heart is aching. I want her so badly to get better and come home and I find myself asking "why" again. I feel like that is what I have been praying for these last few days. I just want to understand why Scarlett was born this way and why she can't get better. I don't even care if I have to take care of her 24-7. I just want her home and to be able to go and hold her when it is 12:56 in the morning.

Everything is becoming so real to me now. I was talking to my other kids the other day about how we needed to plant flowers in our yard next year like the ones at temple square and that got me thinking that Scarlett may not be with us then and that made me sad.

It's been kind of crazy these last few weeks and it feels like every night I say to myself, tomorrow will be the day that I pull myself together. It feels like I don't even have time to listen to myself think anymore, but tonight I got to do that once the kids got to bed and once Jon was doing his winding down rountine before bed. And maybe that's why all the sad emotions are starting to come out. But before I go on and on about that, I better stop and talk about the good things happening.

First off, Scarlett has had a really good week. She is finally back to full feeds, is gaining weight little by little and is still breathing comfortably. Jon and I love every minute we get to spend with her. I feel so much peace when I am with her. Sometimes I forget that she has so many health problems because she seems so perfect in my eyes. 

I love Primary Children's Medical Center, and so do my kids. They have been so kind and helpful through these last couple weeks here. My kids love the "Forever Young Zone", which is a huge play room filled with every imaginable toy on the 3rd floor. 

Hunter is usually found in this dark corner of the play room playing Lego Batman or Lego Indiana Jones, and usually there is a male volunteer (they supervise things and do crafts with the kids) playing right beside him.

Grey and Jaina love making crafts. I think they've made homemade silly putty about 5 times now and have painted so many wooden toys and ceramic figurines I had to start tossing some of them. 

This past Sunday, we thought we would start a new tradition while Scarlett is at Primary's. On the Sunday's Jon doesn't teach Sunday school, we go visit Scarlett in the morning, go to the 30 minute Sacrament meeting held at Primary's (it's short, but seriously so sweet to see all the children who are sick come in and sit down with their families), then we visit Scarlett again afterwards, go on a picnic to temple square and walk around and then go back and visit Scarlett some more. It's been so great to get some extra family time in since it's been slacking a bit lately.

The day after we learned of Scarlett's diagnosis, Jon and I felt we needed to go to the temple. We were both emotionally drained and needed some spiritual refueling. When we went up to the counter to pay for our temple clothes, the man before us offered, out of the blue, to pay for them. He said he was feeling generous. I don't know if he could tell or not that Jon and I were pretty beat, but we were so thankful for his kindness.

As we sat with all the old folks doing sealings (it was early in the afternoon on a Tuesday, and we realized this is where they all hang out), a lot of thoughts were racing through my mind. Why is this happening to our family? Do I really believe in Heavenly Father's plan? Is it true that all the things I learned from my parents and from primary and Young Women's that families really are forever? 

After we were finished with the sealings and left happily smiling at all the cute elderly people, we walked into the Celestial Room. I was expecting to have some revelation hit me, but the only feelings I got were affirmation of those truths that I had been taught all my growing up years. 

That heaven is a beautiful, marvelous place and that Scarlett's body would be made perfect one day. And those were enough thoughts to comfort me.

This is the spot where Jon proposed to me on a nice Spring day in  2004. Little did we know the happiness and hardships that we would face together. But there is no one else in the world I would rather face them with.

I love our other children as well. They are still able to make me smile and laugh and get frustrated and  impatient. Those kind of feelings still make life so normal. They have been so resilient these last few weeks. They just go with the flow and don't seem to mind that all we do anymore is hang out at the hospital. It's been kind of hard at times, though, to know what to say to them about Scarlett. They don't know yet that she is going to die and I don't know how to really tell them so they understand or so it doesn't make them feel sad. All they know is that she is sick and that she can't come home right now.

We have a fantastic ward, and when I say that, I mean everyone has been helping us. From tending our kids while I go see Scarlett during the day or so Jon and I can go together at night, to mowing our lawn unexpectedly or sneaking into our home to clean it better than I ever have. Countless times have friends dropped off treats or offered to help in any way they can. 

One of the cute girls that babysat my kids this week made all these little frogs for Jaina. We are just so thankful for all the kindness and generosity everyone has given us

Last night, the nurses and RT moved Scarlett to a family waiting room so that she could have a lot of friends from our ward come visit her. This was a special night for me- to be able to have Scarlett meet all these people who love and care about her. 

These women are some of my dearest friends. They have been there for me every step of the way. They've watched our kids, cleaned our house, brought us (literally) cart loads of snacks and goodies, made Scarlett bows and have given me lots of needed hugs. Everyone needs friends like these women. I truly love and admire them.

Sorry, Kate- your face was covered, but you are still beautiful! And, wow, I just realized how HUGE I look in that shirt. 

Scarlett started music therapy yesterday. The therapist said she responds well to music. They asked if we wanted to make up a song for Scarlett yesterday so I said sure, why not? thinking it would probably be super cheesy but maybe the kids would like it, but honestly- this has been one of the highlights of this whole experience.  I love the way the song is coming together and it helps us think of the things we love about Scarlett. They are putting it to a beautiful melody and I can't wait until it is done so we can start singing it to her.

Scarlett is also receiving Physical Therapy for her contractures and the PT is teaching us massage techniques to help relax Scarlett.

Something funny happened here, but I can't remember what. I just love Jon's face.

Maybe I ought to go to bed now, but it felt good to let some of these emotions out. I just pray that I'll have the strength to handle what the future will bring.