Pink and Yellow and Minnie

Hannah has had a pretty mellow day.   We were given the option of going up on the valium from every 6 hours and using it every 4 hours if she needed it.  Because of this, we were able to keep her from getting agitated for a good 24 hours.   As a matter of fact, we didn’t use chloral hydrate for 18 hours, which is a record.   Of course, that record ended this evening when we had to use it just 4 hours after the previous dose.

I don’t know if it was the timing of the meds or if she is developing more of a tolerance to the valium.

My sister-in-law came over to hang out last night.   She wanted to get some lovey time with Hannah while she was sleeping.    What I love about her is that she asks questions that people are afraid to ask and makes comments that people are afraid to make (reminds me of my friend, Heather).

One of the questions she asked was about the funeral.  She wanted to know basically if it was going to be a mourning or celebration service.  Black or colorful.

Months after losing most of her fine motor skills, she used all of her energy and enthusiasm to reach out and touch Mickey Mouse! I cried with happiness right then and there. Best moment ever!

I told her that Daddy and I actually had already discussed this when we met with the funeral director a few weeks ago (has it already been a few weeks?!).    We want the service to be a huge celebration, lots of pink and yellow (the colors that remind us most of Hannah), and lots of Mickey and Minnie Mouses, music, ladybugs, and monkeys.  No black mourning dresses or suits.   A true celebration of Hannah’s life.

It is surreal and bizarre to think about stuff like this when Hannah is sleeping only 10 feet away from me.    She is sleeping on her Minnie Mouse pillow that was made for her for her Make-A-Wish trip back in the spring.  She is surrounded by lots of Minnie Mouses actually – from a big 3 foot one to various adorable little ones.   She is snuggled in her bed, covered by her Minnie blanket given to her by some good friends.  Her balloon Minnie is also near her, watching over her.

Minnie and Mickey have made her so incredibly happy ever since she could recognize them.  Watching the Mickey Mouse Clubhouse for hours on end.   Spending the best time of our lives (literally) at Walt Disney World and seeing Hannah reach out to Mickey with the biggest grin ever on her face.  I love seeing her surrounded by them now.  I think Minnie will always have a soft spot in my heart forever.

Her breathing is more shallow than it was a few days ago, but right now she is comfortable.

Time for me to crawl into bed with her and get my snuggle time on.

Comments

  1. I love that you are planning a celebration. As we talked about it, I was so proud of you and Robert for planning ahead. Not that anything about the funeral will be easy…. but having the plans in place will ease some stress and allow you to focus on each other and celebrating Hannah’s beautiful spirit!

  2. We will celebrate the day from afar.

  3. I hate that you have to make these decisions. But I am proud of you for choosing the celebration service. That’s what we did for Gage and I would not have had it any other way. There were balloons and we decorated the tables at the front of the room with his toys, blankets, clothes, etc. I wore a bright yellow shirt. He was such a happy baby, even through his transplant and I wanted everyone to know how beautiful his smile was. That picture of Hannah with Mickey brought tears to my eyes this evening. I wish I could do something, anything to help you. Please know I think of you daily, and have done so for the past couple of years now since we “met” through our babies rare diseases. Sending you strength and hopes for a peaceful evening.

  4. Sometimes I dread when I see a post, posted on FB. I worry is this the begining of the end, my heart squeezes until I start to read, and then I cry tears of joy knowing her Micky’s and Minnie’s are close by and make her so happy. I have never met Miss Hannah or you guys but I pray for you all every night and during the day. No parent should have to go thru what you walk thru each day. Its not fair, its not right. I have no right words to tell you to make you feel better. This journey (road) sucks but I am here when you need me. Loving Miss Hannah from afar.

  5. I think a celebration service is a lovely idea. When the time comes, I wish I could be there – I can’t, but y’all will be, as always, never far from my thoughts and prayers.