April 30 was Joyanna’s birthday and was the sweetest one we have spent with her in several years. The funny thing about that is it looked nothing like a “typical” birthday for a 7-year-old. This year, the Lord helped me to grasp the concept that Joy’s birthday wasn’t about me and what I thought a birthday should be like but a day that Joyanna would enjoy. There’s nothing wrong with celebrating in a typical way, even if it’s for our family’s pleasure, but I was able to see how special it was for all of us when I let go of the idea it had to look like other birthdays. The truth of the matter is she can’t eat cake, she can’t blow out candles, she can’t open her own presents, she can’t see balloons or streamers or gifts. There have been other years when I grieved these changes (and there’s nothing wrong with that) but that time has passed. I thought, why do I keep expecting this year after year. I began to think, “What would Joy like?” This is how her birthday played out. She had 3 doctor appointments scheduled for the day. That’s just how it worked out--one in the late morning and two in the afternoon. So many people said with slight sarcasm, Happy Birthday, Joy! However, the doctor's appts that day meant she was able to sleep in a little bit, compared to getting up early to catch the bus to school. When she had been awake for a few minutes that morning, I went quietly to her bedside and quietly sang Happy Birthday to her. As I started, a slow smile broke out on her face. That would have made it all worth it for me. It was precious! She obviously still knows Happy Birthday is a special song for a special day. In fact, she loves music so much that we sang every version of Happy Birthday we knew and several others we made up for her all day long. She loved it! As I got her dressed for the day, I turned on some of the birthday episodes from her favorite shows. She enjoyed birthdays from Little Bear, Curious George and Little People. About halfway through our appointments, I realized that because of these appointments (Ben tries to attend most doctor visits), the 4 of us had been together all day. Joyanna still loves that, and I love it even more. Plus, Joyanna got to see some of her favorite people all day long. Have I mentioned we have great doctors and nurses in our life? 😊 We had decided that evening we would make those perfect portions cakes (cakes in a mug) for Ben, Ethan and I but it never actually happened. We just didn’t feel the need. We did “open” her presents (none were actually wrapped) and cards and told her about what she received. Then, we ended the day with a group Facetime call with my family, which was great! It was a good day! Once again, the joy of beautiful things when released from the bondage of expectations.
On the next Monday, my parents came into town to stay the week with us. It was wonderful time together. That Tuesday, Ben preached chapel at Heartland Baptist Bible College, where he works, and the yearbook of the college this year was dedicated to Philip. So sweet! He has a spread of pictures alongside the dedication paragraph. That will be special to hold on to. My older brother and family came down for the dedication chapel. Joyanna had an infusion that week and the next day, May 9, we moved her into TCC for her summer stay. It was a blessing to have my parents watch Ethan for these times. They all agreed it was a good time. Ethan and Poppa built lego contraptions together, Granny and Ethan worked puzzles and read books, and they said he was the best hotel maintenance man they had ever had. He was responsible for emptying their trash and refilling the water bottles in their mini fridge, plus running up and down the steps and various other odd jobs. My oldest nephew, Tyler, graduated from high school that Saturday and my dad was able to preach the charge to the graduates. My younger sister flew in for the graduation and because it was also Mother’s Day weekend, all three daughters were with my mom on Mother’s Day for the first time in probably 25 years. Right on the heels of them leaving was the graduation week at Heartland Baptist Bible College. One of the reasons we moved Joyanna into TCC in May was so we could be more involved in the conference. I was able to attend the meetings and spend time with my youngest brother and his wife who were here for the 4 days of the preaching meeting. I was able to see my whole family within the space of a week--just not all at the same time. 😊
Now, about TCC. Joyanna is not in the same place at TCC as she was last year. The newer addition was having HVAC problems so she is in a unit similar to where Philip was originally. Now that she has been there almost a month, she is settling into her new routine with therapies, class time, and other events. It’s different than being at home but it will be good. She really would be bored at home all summer. I have to work hard at letting all the little things go; naturally I do things differently at home and sometimes want to make her stay there as if I was caring for her, but it’s really not possible. I have to take a step back and evaluate whether this or that needs to be mentioned. We want her to be comfortable and to have a profitable time, so there are plenty of things to manage; however, which scarf she is wearing and how her hair is done are not things to mention--it’s such a learning process. She has already done some fun things, like the day the teachers turned their classrooms into live game boards: Clue, Candy Land, and Hungry Hippos. Ethan and I arrived just in time to go through each one with her. We loved being able to do that with her. It was so fun! She has already seen the dentist and he pulled her 6th tooth. She is getting in the gait trainer 3 times a week and is taking steps each time. Speech and occupational are working with her too. Her OT said her arms are not as tight as the notes indicated from last year so whether that is medicine changes or something else, we are thrilled with it. She was happy when I picked her up for her infusion this morning. The infusions are continuing to go well. We are coming up soon to another approval for the infusion but it would be a surprise if she wasn’t approved now that she is taking steps again. She will come home from TCC on July 10.
I try to make it to see her every day at least for 30 minutes to an hour. I have made it at least once to class and two of her therapies as well as talking to her dentist. We provide her own clothes and do her laundry, so I must make sure the closet is stocked in her area--they all talk about Joyanna’s signature coordinating outfits, complete with scarf and hairbow. Ethan is usually with me; he is well-known at TCC. He has quite a lot of fans too. TCC is a great place! We enjoy seeing the people there when our children have been patients.
We went to Colorado Springs and back over Memorial Day weekend. My husband was in the wedding of a good friend. It was a great day to celebrate with them, but the surrounding days also gave us a chance to enjoy Colorado Springs for the first time. We made near to the top of Pike's Peak and the view was amazing; nothing like Ethan had ever seen before; it was a beautifully clear day. That Saturday, Ethan and I went to Focus on the Family while Ben got ready for the wedding. He enjoyed their 3-story slide and we got a World Famous Chocolate Soda (Wod-Fam-Choc-Sod) from Whit's End. There were other places to play and we saw a group of boys getting a chance to be the voices on a special version of Adventures in Odyssey--very neat! We determined we need to go back to Colorado to enjoy those things and others with more time to spend. It was a great trip! Joyanna did not have to make that trip with us and I'm thankful. It would have been too much for her.
This week we are having a grand time with my niece and nephew staying with us. Ethan loves having time with his cousins, on both sides. My nephew is 7 and my niece 9 so it’s even better that they are “older cousins”. As pastor, this is camp week for my oldest brother and his wife, as well as their oldest daughter. We were excited to be home and have the opportunity for them to stay with us. We have been to the cool new playground near TCC in Bethany, OK and to the college campus for a staff potluck lunch. They scootered around with new friends they met who are staff kids. They have had a blast splashing in the kiddie pool in our backyard, much like it was a great waterpark. They’re staying with a family friend today during Joyanna's infusion. Tomorrow evening, we’re topping off the week with a simple escape room game that I came up with for our guest room at the house. I’ll meet up with their parents on their way home from camp on Friday. Good memories are being made this week!
We have the summer ahead of us but it will fly by for sure. Recently, I pondered how I always get to the end of a time with family or vacation or whatever, and comment how it has flown by. I determined not to leave these opportunities with that sentiment. I’m going to try to just accept that it will fly by, but to enjoy every moment that it brings and leave with the beautiful memories created. I think we’ll always wish for more time, but we can enjoy the time we have.
I’ve also thought recently that I don’t actually feel like I’m in the middle of a storm anymore. Maybe I’ve settled into the sense of calm that has shaped our path for the last 9 months. I’m not completely sure. But this vantage point has allowed me to look back a little and evaluate the days and even years we’ve just passed through. I couldn’t even express all the lesson I’ve learned; I’m a changed person. I can’t say with earthly understanding that I would’ve chosen all the way this journey has taken us but my spirit within me cries out that I’m thankful for the journey and I can’t really say I would change it.
I was able to sing this song this past Sunday at SWBC. The words just grabbed my heart when I heard it. In fact, I felt like they were from my heart. I hope they are a blessing to you today.
Sometimes It Takes a Storm
Jessica King
When your waters are so troubled,
you think you can’t go on at all.
Waves may seem like mountains,
when your boat is oh so small.
But somewhere past the clouds,
waits a new day to begin.
Sometimes it takes a storm,
to calm your storm within.
Sometimes it takes a storm,
to know you need a shelter.
When the anchors in your life,
disappear without a trace.
Sometimes the wind will rage,
before you sail calm waters.
Sometimes it takes a storm,
to find a hiding place.
They were drifting in the darkness,
the sea was all around.
They cried out to the master,
please save us or we'll drown.
Jesus heard the cries,
and mercy stilled the wind.
Sometimes it takes a storm,
to see the sun again.
(Repeat )
Sometimes the wind will rage,
before you sail calm waters.
Lord thank You for the storms,
for I've found my hiding place.
I thank You for the storms,
Lord You are my hiding place.
Songwriters: Charles O. Isbell / Zane King