Sleep, sleep and more sleep

Sleeping beauty

It is so hard to explain what I feel right now. Part of me is happy that Kaitlyn is still with us and a part of me is sad and misses her smiles and giggles and even eye contact. One of the hardest parts of being a parent is making decisions that effect your child's health and well being. Kaitlyn isn't in any pain (or at least any that we are aware of) due to the pain patch she wears and other medications she is on, but the trade off is that she sleeps almost all day and all night and can't even focus or see us for the short amount of time that she is awake. The vision part is most likely the disease itself but it really hurts my heart knowing that she probably can't see me, her dad or her little brother. I know it's best for her to not be in pain, but I would give anything just to have her old happy, smiley self back for just a minute... anything.

I am by her side in our master bedroom pretty much 24 hrs a day. It's quiet in here... too quiet. You would think that I would take advantage of the time and do things like organize or clean, which I did for the first week or so but now I'm at the point where I feel frozen. I am 110% on Kaitlyn's schedule for medications, etc. and don't even nap when she's sleeping because I feel like I need to be ready for anything that may happen and I also don't want to miss any of her meds or times when she is awake. She is really quiet now when she wakes up, you may not even notice it unless you were looking at her eyes.

When she's awake, we listen to music and I sing songs to her. I read books and show her the pages, even though I know she probably can't see them. I talk to her and put videos on that she is familiar with. Cole will come in and sit next to her and watch the videos. The other day he tried brushing her hair, it was too cute!

Watching a video together

Meanwhile, Cole is growing and learning so fast that I sometimes feel like an outsider looking in and am missing parts of his life. I know I am doing what is best for our family, but it doesn't always feel good when I am told the new words he is saying or what his latest antic is. Cole plays downstairs most of the day and comes up to see Kaitlyn and me when Kaitlyn is awake and even when she's asleep but it's not for long. I miss Cole too.

So sweet!

I pray that while Kaitlyn is asleep she is dreaming of heaven or of anything that makes her happy. I hope that in her dreams she isn't confined by her disease and is able to smile and laugh and play with toys like she used to. 

Thank you to everyone for your prayers for Kaitlyn and our family. Reading your messages and comments really helps to lift us up and know that Kaitlyn is making a difference.

She recently finished her antibiotic, azithromycin, for her lung congestion with high fever and then a few days later her lungs sounded "bubbly" again. She is now on Ceftin, an antibiotic that was recommended to us by another NPA family who had success with it in the past. Hopefully it will help kick any bacteria out of her system, although the congestion could simply be disease progression of fluid in her lungs.

Every day we have to make so many decisions. Through our entire journey, I think that right now has been the most difficult. Knowing that so much of her is gone but she is still here. Wanting to be happy and enjoy every moment with her but grieving the rapid loss of her abilities and awareness.  

I think about what she must be feeling inside and I can't even begin to describe the pain my heart feels for her. I feel selfish for feeling sad when it must be miniscule compared to what she is going through.

May God give us the strength to make the difficult decisions and to focus on the fact that Kaitlyn is still with us and is still making a difference in both our hearts and others'.