Today is Tuesday but Joy is getting her infusion today—talk about changes! It’s only for this time. We had several things that were different this week and so I asked if we could move Joy’s infusion to Tuesday this week instead of Wednesday. It actually worked better for them here at the clinic as well, so that was Providence. The main reason is so that I can attend the graduation ceremony at Heartland Baptist Bible College tomorrow. This is usually a ceremony held in May but it was cancelled of course this past May and rescheduled for the opening week of the fall semester. Some dear friends are graduating and I’m glad it worked out that I won’t have to miss this milestone in their life. It meant I needed to find a place for Joy to stay for a few hours because we aren’t taking her into crowds right now. But then I thought of her sweet Sunday School teacher from a few years ago who loves Joy dearly. She hasn’t been able to see Joy lately and was delighted to spend some time with her. We’re planning on them to have some good time together tomorrow.
Today, it’s been 2 years since Philip went to heaven. I can’t believe how that time has flown. There have been tears today, but good, healing tears. There has, most noticeably, been peace. The memories of Philip and his death do not carry as much sting anymore. Christ has been sufficient in His grace and has helped us remember our firstborn with purpose and with joy. Parts of Philip’s life are woven into our daily activities and words. (We have Philip sayings that still are part of our regular conversation.) We talk about him to Ethan so he’ll know things about Philip but none of it feels forced. It’s a peaceful, regular remembrance of a sweet life given (and taken) by God. Sorrow is a beneficial emotion for us all, because it makes us consider the deeper things of life. I don’t dread it as I used to. Therefore, the sting is taken out of it. It’s become a familiar friend. If you struggle with my meaning, try reading a favorite read, Hinds Feet on High Places by Hannah Hurnard. It’s an old book but I feel as if the journey Hannah wrote about is my own life. I don’t wish for you to experience Sorrow and Sadness as we have but if you have, you know what I mean. All of that to say that today, there were things to accomplish (an infusion, care for Ethan coordinated, etc.) and the fact that it was the day Philip went to heaven didn’t have to demand all the attention or the first priority…and that is okay.
We did find out that the OKC public schools are planning to bring special education students back to school in the school building. That is a great relief! Joy will greatly benefit from in-person interaction and therapies resumed. We still don’t know the details of this but we are eagerly waiting to get on board with them. She was able to get into the gait trainer a few times since the last post. At least two of those times she did not pass out, but we did get some info on the times when she did. Unfortunately, we had two times in her stander where she didn’t fully pass out but very closely did, so we’re still in an exploratory state to give the doctor information. She also has had an increase in involuntary movement, especially in the evening, so we have increased one of her medications, hopefully just to adjust for growth and weight gain. It seems that increase has helped so far. She is definitely calmer. As the weeks are moving on, there is even greater peace in my heart about what God is doing with Joyanna right now. I know that He is guiding each step of her care. We try to daily place her in God’s hands.
We’re thankful for what God has done and is doing, and this journey isn’t over. He has showed us peace in the past as well as peace for right now, and that gives us great confidence that His peace will continue into the future. He is good!
Enjoy this great hymn as you go about your next weeks! Peace that passes understanding!
Wonderful Peace
Far away in the depths of my spirit tonight
Rolls a melody sweeter than psalm;
In celestial strains it unceasingly falls
O'er my soul like an infinite calm.
Peace, peace, wonderful peace,
Coming down from the Father above!
Sweep over my spirit forever, I pray
In fathomless billows of love!
What a treasure I have in this wonderful peace,
Buried deep in the heart of my soul,
So secure that no power can mine it away,
While the years of eternity roll!
I am resting tonight in this wonderful peace,
Resting sweetly in Jesus' control;
For I'm kept from all danger by night and by day,
And His glory is flooding my soul!
Ah, soul! are you here without comfort and rest,
Marching down the rough pathway of time?
Make Jesus your Friend ere the shadows grow dark;
O accept of this peace so sublime!