No Matter What, CELEBRATE!

Last night I revisited a video on my phone, one that I visit often. It is of one of Lucy’s last really good days. She is alert and responsive, seemingly in very little pain and not struggling with her breathing. Indeed she was very weak, but she was still strong enough to engage with us. I took this video to remember the moment and the day that she had just had. Her cousins had come to visit as well as aunts and uncles. You could feel her peace and contentment, even with all the giggling and playing happening all around her, that almost seemed to put her at peace more. She just wanted to be held and watch her cousins play. It was a very very good day.

To end the day, at midnight we sang Happy Birthday to her, since she was 6 months old, we knew this would be the only birthday this side of heaven we would have with her, so I gave her a little bit of icing, to which she smacked her lips.

The days that followed, we watched her pain and the pressure in her head from the fluid continue to increase. With the ever-growing fluid gathering in her head and her tiny body getting even tinier, because she had lost her swallowing reflex, and no longer could take a bottle or eat baby food, everything got harder for her. Blinking, squealing, raising her hands, kicking-which she was REALLY good at! Days consisted of my mom and I making a Lucy Sandwich, and laying with her, watching her every move. My dad would answer the door and then come sit with us. We would sing and talk to her and she would just stare at whoever was talking. 😊

Hospice and KidsPath were a tremendous! Her nurse would come once or twice a day and checked her vitals, made sure she had the medicine that would make her comfortable, made sure we were informed on where she thought Lucy was in her “home-going,” which was a enormous mercy! What you don’t realize is that even if you have walked through a hospice situation with a friend, grandparent, parent, a child is just different. Some of the same signals are given, but on such a smaller body! And as much education as I had tried to fit into the adoption waiting: culture, hair, skin care, I still can’t find where I should have been educated or a resource on hospice signs for my sweet brown baby girl. This was a completely new hospice and skin care lesson. Another thing that is difficult in any hospice situation is giving the meds at home, no matter the age. I was a bundle of nerves when I did this for my grandfather, but giving the same meds, of course different dosages, to a frail six month old who is already not swallowing things correctly, but knowing that she was in pain and very much needed them, is something I wish on no one. Also a hospice social worker would come usually once a day and check in on us. We did a handprint craft over a few days that now hang in our house. My mom’s and Lucy’s, My dad’s and Lucy’s, and mine and Lucy’s.

As I wrote earlier, we celebrated her birthday, because of many reasons, but most of all, Jesus allowed me to have her for the very best six months and a few extra days 😊 I wasn’t going to pass up that opportunity. He called and He was faithful.

I love children’s birthdays, the themes, treat bags, decorations, excitement, the kids! It just brings so much joy! I looked forward and daydreamed about Lucy’s birthday parties and wondered what she would want. Although she is not here physically with me, I still have parties for her 😊 It’s not the same, but I refuse to let that be a reason to not celebrate her life and have a little fun to remember we are a family, her and I. Even if its just family, or if I just make something to remember the year- it keeps her alive in my heart and soul!

So if you are out there and missing a child, let me tell you this: Do what makes your child stay alive in your heart, soul, mind, and life. Don’t let anyone convince you otherwise! Celebrate them! No matter if their life was only lived in your tummy, or whether they lived in your arms for a few hours or whether they lived many years, celebrate them the way that brings joy to you!

Here’s just a glimpse of the birthday parties I’ve done for Lucy Scoops: 💕

I miss her like crazy cakes! And this doesn’t get any easier. But I do love finding and creating new ways to celebrate her life and share her with others.

I hope you will do the same with your loved ones who have ran ahead! Every story matters!

Picture today: Lucy with her size 18 months (because she was hitting at the 100 percentile in height and weight before diagnosis) birthday outfit on while we sang Happy Birthday!

Life Book of the Week: I have two this week 😉 The Memory Box, by Joanna Rowland. The Invisible String, by Patrice Karst.