We have been signed up with Hospice for just shy of a month. It has been a month spent making memories, getting to know the team, working through the logistics of transitioning her care to them, trying to battle the symptoms that keep creeping up, and settling into this new bend in the road.
This part of the journey has bigger emotions. More tears, more anxiety, more sadness, more confusion, and more pain. It also comes with a renewed sense of appreciation for one another and the freedom to normalize death as a part of life as much as that is possible. We have seen our other children blossom under the ability to ask a quick question about what is happening and then move on to homework or making lunches. We have seen them flip through a children's book about death, ponder it for a moment, and carry on. Being able to voice our worries and fears has allowed us all to wrestle the big things for short amounts of time, weaving it in to our daily lives. It truly is remarkable how making it a part of us has lessened it's grip on us.
One of the very first things Hospice did for us as a family was to come in and do hand castings of us all. It was an absolutely beautiful process. It was crazy and messy. It felt sort of yucky to put our hands into the plaster. We laughed, we helped each other stand still, and we prayed over our family. It was crafty, therapeutic, and spiritual all at once. Besides Keyan, the rest of us understood why we were doing these but it didn't need to be talked about at that moment. Our eyes locking in to one another's said more than words ever could have.
All five kids did the first one. Here they are practicing for the real thing!
Hands are in the plaster and no one is really sure how they feel about it! It was cold and squishy.
Keyan's body is never fully still and her hand needed to be for this to work. Without saying a word, Jamahl just reached over and steadied her arm so that she didn't continue to struggle.
Time is starting to feel really really long!
We took the opportunity to say a quick prayer for our family. It was just something short, thanking God for the day and the opportunity to be doing it as a family....there were so many words left unspoken!
The social workers also took impressions of everyones individual hands and then Keyan's footprints.
Next it was Mommy, Daddy, and Keyan's turn....you can tell how she was feeling about having to put her hand in the goo for a second time!
It was such a special time to just pause and focus on each other.
Just this week, our social worker delivered the final products. Photos will never do them justice. There are more than just these four. They are beautiful, intricate, so special, and full of emotions. They are powerful works of art that move me every time I look at them.
Even Maddie got in on the project!!! Keyan's foot prints are on of my favorite pieces.
One of the unique things about anticipatory grief is that no matter how far in the depths of it you may be, life keeps going on around you. Before we knew it, it was Spring Break time. We had no big travel plans but desperately needed a change of scenery and some time to just be together. Our special friends let us use their home in Indian while they were on their own spring break trip and it worked out wonderfully. We ate yummy food, swam, swam some more, tried an escape room (GO AND DO THIS WITH YOUR FAMILY!), watched ice cream being made, had family visit us down there, went on walks, swam even more, had an easter egg hunt with friends, took a day tip to the planetarium in Chicago, and just plain enjoyed out time together. It was perfect, except for Paul getting quite sick and us doing the nursing for five nights straight....I have to keep reality in here a little bit!! The end of the week brought sleepovers with Grammie and Poppie and Aunt Roo and Uncle Jay while Mom and Dad took care of Keyan at home, I am learning how essential it is that the other kids have some sort of life outside of these walls and am so grateful for the people who offer that to them.
Our very first destination was Chick-Fil-A for dinner as soon as we drove south enough to find one. As we sat there and ate, we ran into 5 other families from Holland heading south as well. Of course, most were heading much further south than us but it was still very ironic!
Our friends have a beautiful indoor swimming pool that got a lot of use over the five days we were there! The kids spent hours every day in the pool playing all sorts of crazy games.
The different craft supplies were a hit with everyone too!
We couldn't be away from home and not keep track of April the giraffe!
Easter egg treasures!
Seriously, the escape room was one of the best hours of our trip. We had to work together to solve several dozen riddles, puzzles, and clues in order to escape. We needed about 10 more seconds and we would have been successful! We had so much fun despite the failure!
Our time in Chicago was brief because Keyan's body needs to sleep a lot but we packed two shows and several of the displays at the planetarium in and even found a yummy burger joint not far away. A big city is not easy to navigate with a wheelchair and large family but we did it and were pretty proud of ourselves!
And I guess that brings us to this week...Keyan is keeping us guessing and on our toes. Her GI tract has had significant decline and her disease continues to progress. We are driven by her quality of life and right now are struggling with that somewhat. She is needing to get up about every two hours all night long to use the bathroom. The diarrhea and pressure in her tummy keeps her up and on the potty for over an hour at a time sometimes. It is relentless. She is getting very fatigued by it all. We did start using a little pump to give her a constant drip of medicine to help control the nausea and it is working wonderfully. She can also give herself additional meds when she feels like gagging and she literally has not gagged and wretched in almost 2 weeks. We are beyond thankful! That comes with a price though...a needle poke every four days, another dressing on her skin, two other lines that she is connected to 24 hours of the day and another pump in her backpack. She cried and cried last night when I changed the needle sight. It is heartbreaking. We are searching for better pain management as her tummy still hurts her all of the time...please pray that we can come up with something. We have a meeting with the Hospice team tomorrow and there is lots to be discussed.
Please continue to pray for Paul and I. We need so much strength to make decisions every day for her. We need stamina as we care for her without nursing some nights. We need fortitude to continue this race. We need patience and grace for each other and towards our kids. We need prayer for sleep and that our brains will give us a break from the constant churning. Please pray that Keyan can get good rest and that her pain will subside. Please pray for her spirits as she is often confused about the changes in her body and frustrated by the intrusions of symptoms. Some days, she just has a very low tolerance for life around her. The noises, the lights, and the activity is all too much. She is such a fighter and that will continue to carry her thought this path but pray that we can all know how to balance the days ahead.
No comments:
Post a Comment