Well, the last post said routine is coming! I can’t say that “routine” exactly describes these last two and a half weeks that Joy has “been” in school. I had to put quotes around “been” because she has only been in her full school day maybe 3 or 4 times. The biggest issue has been trying to iron out the bus schedule, since we have bus pickup and drop-off scheduled for her. So, I have taken Joy to school many mornings or the bus has gotten to our house very late. Then, we had a pretty significant wind storm on Monday night of this week and school was cancelled Tuesday and Wednesday for power outages in some areas still. Needless to say, all my best-laid plans of having a structured home school time have proved to be lessons of flexibility. We have accomplished school every day. But only one of those days did we start when I had hoped. With that said, Ethan and I both have enjoyed school time. He is doing very well. Because we are just beginning kindergarten curriculum, we can finish in about an hour and a half, sometimes 2 hours if we play all the games and do all the extras. It’s so nice to be able to choose if we have time for the games and extras and not feel bad to leave them out sometimes. The two days that we have done school with Joy at home, I have put her in her wheelchair and moved her near where we are doing school. She has enjoyed our school time as well. She was trying to “talk” to us during school yesterday, especially during the numbers section. When I would count with Ethan, you could see her get excited and try to start talking. I’m guessing she still remembers her numbers. I believe she has enjoyed being back with her teachers and friends and despite the lack of solid routine, I can see her sleep schedule gradually moving to where she is not sleeping the entire morning.
Today, she is getting her infusion and has surprised me by being awake the whole time. I think the main reason is “Little Bear.” A couple of years ago, all the Little Bear episodes (early 2000’s cartoon) were removed from YouTube because of copyright issues. My children LOVE Little Bear. We purchased or were given some of the DVDs with episodes, but haven’t watched all the episodes, some of which were Joy’s favorites. This week, we realized that ALL the Little Bear episodes were back on YouTube. So, you can guess what Joy is watching during infusion today. She hasn’t closed her eyes once so she must really be enjoying binge-watching!! 😊 The nurse and I have laughed because the only time she moves is between episodes when there are either ads or the opening music for the show. I can’t remember the last time she didn’t sleep at all during infusion.
I’m just not sure what to expect for the routine in the next few weeks. I guess we’ll roll with it whatever it is. I still have mostly been getting up at 5 am and walking and am enjoying that time.
The college is back in session and it is wonderful to see the students back. We’ve already been able to have some of them over. We’re so thankful to know these young men and women who are preparing to serve the Lord. They are a blessing! Ben is busier now but we expect the school year to bring that schedule back.
The one-year anniversary of Philip’s passing was this past Sunday. In the week leading up to August 25, I was prepared for times of grief. Though there were two specific times of grieving, most of the week were precious memories of little Philip, baby Philip. Because he is our firstborn, he and I spent so much time in the beginning, just the two of us. I would make dozens of “photo shoot” setups and took hundreds of pictures of our sweet little baby. I remember him just laying sweetly (as long as he was fed) near wherever I was working--sometimes on a blanket in the grass while I worked in the garden, sometimes on my bed while I folded clothes, mostly in his swing, bouncy seat and jumparoo. But with these memories, I can honestly say there weren’t tears. There was precious peace and thankfulness for moments spent with our sweet boy. Most of the tears came from replaying the last days of Philip’s life. But I needed this. So this past Thursday, Friday and Saturday were the hardest days. There were distractions on those days where I was able to turn my attention to helping others. I appreciated that opportunity. While I realize that there were some emotions I needed to process, I didn’t want to get stuck on me. It’s so easy to get stuck on me and what I’m feeling. On Sunday, our church welcomed all the incoming college students with a meal in the afternoon and evening, which we attended. This made the day about the Lord through the church services and outside of services, about making incoming college students feel at home in a new place. Many times, God can heal our hearts if we don’t keep re-opening the wounds ourselves. I’ve worn Philip’s birth stone on a necklace for most of the days of this week. It’s been a sweet reminder.
Hope you are having good days in whatever your routine brings (or doesn’t bring). Thank you for praying for us.
9-17-2019
Our routine has indeed gotten better. Ethan and I have moved closer to a specific start time in school or at least a scheduled start time depending upon the activities we schedule around. I have learned that, depending on chores and breakfast as well as Joy’s appointments, I can set a start time aloud for Ethan and I, and we stick to it pretty close. That’s helpful. We are still enjoying school.
Joy is enjoying school too. We have finally gotten the bus routine down and it’s working. She did have Labor Day off and another professional development day last week. This week she is missing Tuesday-Thursday for a new infusion she needs to receive. Her doctor did a scan of her bones in the early summer and found she needed a little help with strengthening them because she is not bearing weight very often. The medicine that best helps with this needs to be given via an IV infusion. She will have a 4-hour infusion over 3 consecutive days every 3 months. She will have routine scans again along the way to determine if the medicine is actually helping her bones get stronger. So, today is the first day of the infusions. Ben is with me today (He likes to be familiar with a procedure at its beginning then he usually turns it over to me afterwards) and we decided to bring Ethan as well since we would both be here. Joy was awake for a while but is sleeping now. It has gone smoothly. We hope this treatment helps and we can avoid fractures, especially in her legs.
Most everything has been going smoothly for so long that when she developed two sores (one on her thumb and one on her heel), it seemed the most momentous thing in a while. These sores are still healing and thankfully have not gotten infected. Our nurse friend, Lisa, has been a great help in making sure they’re healing properly. Understandably, she doesn’t want to wear the brace for her left foot right now where the sore is, so we’re hoping that she doesn’t lose range in the ankle motion while it is off.
Ben and I decided that tomorrow during her bone infusion, I would try to do two days of school with Ethan at TCC so we wouldn’t miss so much this week. I have everything ready to bring and I hope it goes well. Thursday he gets to stay with a family friend. We’re relying on those around us just as much as ever to make the appointments she has go smoothly, for her and for Ethan.
Last Saturday, we went to Oklahoma Science Museum with other patients from the Jimmy Everest Center where she receives her Brineura infusion. That was the highlight of Ethan’s week. He only remembered one other time at the science museum and obviously loved this time even more. A couple we have become acquainted with through OU Children’s were the ones who hosted the event and it was great to see them. What a special event for the families who are walking a hard path. Most of the other families are dealing with cancer.
Soon, we’ll be involved in a few more things with TCC too. We’re trying to be sensitive to God’s leading of what He wants our journey to look like and how He wants us to impact others around us. This life is so short. Our assistant pastor preached on Sunday and reminded us how short this life is and how we should spend it investing in heaven rather than earth—things that will last eternally and not temporally. We pray that we, and you, will make decisions with heaven in mind. What will truly make a difference? The souls of others.
Looking Through His Eyes
Let me see this world, dear Lord,
As though I were looking through Your eyes.
A world of men who don’t want You Lord,
But a world for which You died.
Let me kneel with You in the garden,
Blur my eyes with tears of agony;
For if once I could see this world the way You see,
I just know I’d serve You more faithfully.
Let me see this world, dear Lord,
Through Your eyes when men mock Your Holy Name.
When they beat You and spat upon You, Lord,
Let me love them as You loved them just the same.
Let me stand high above my petty problems,
And grieve for men, hell bound eternally;
For if once I could see this world the way You see,
I just know I’d serve You more faithfully.”