Ben
Ben is always thankful for the flexibility of his job. He’s often saying how God knew exactly where to place him so that the flexibility intentionally built into his job would allow him the opportunity to be available for the family when needed. He spent most of the hospital time with Philip last week. This week, he is involved in Alumni Homecoming Week at the college. It’s a busy week but a very good week, seeing familiar faces of those who return to the campus. My husband is ever our steady rock. God also knew what He was doing when He made him the head of this family.
Me
I still marvel that this is actually me walking this journey. I know me. Fearful, worried, emotional me. I ask myself about the me I know, ‘How did you make it through last week?’ It was a crazy, busy, emotional week. And yet, I made it. Not without some tears but certainly with peace and grace and many times a smile even. I don’t always know what to think about it. Most days, I’m able to read something from the Bible (but not always) and my prayer life is certainly more like a continuing conversation than a list that I am able to take 30 minutes to go through. It’s almost like now I know that in the craziest times, it’s more evident that Jesus is the one propelling me forward. I think what I’m learning the most is that we are nothing and He is everything. I have no power on my own to come through a week like that with joy. So, when I do, all the glory goes to Jesus. My load has been lightened in so many ways by Elizabeth coming to help Philip. She's also been an encouragement. I'm thankful for the Lord opening that door.
Philip
We think it’s becoming clearer that Philip is entering a new season in his journey. Last week’s seizure event and some returning chorea, as well as a new kind of seizure on Monday are just a few signs that the progression may be moving more quickly. With that said, we made medicine changes and the last few days he has been comfortable again. We certainly covet your prayers for the many decisions that we will need to make regarding him in the near future. We have already decided that when he needs 24 hour medical monitoring, we will move him into the Children’s Center at Bethany. It is an in-patient facility for children with complex medical conditions. Philip and Joyanna’s pediatrician is at this facility and Joyanna has some therapy there. It’s a wonderful place where the staff really love what they do and caring for the children. We don’t know God’s timeline for Philip but we do trust that He knows it and is completely in control of all things. I’ve been experiencing something similar to the months before we received a diagnosis for Philip. It seems in my spirit that the Lord is beginning to gently prepare me for his homegoing. It’s so many little things that I couldn’t even write them all here but they all add up to that still, small voice inside letting me know that the Gentle Shepherd is walking ahead of us and leading the way. As you can imagine, this brings times of sorrow. I’m praying for Philip to stay comfortable. The Lord has been gracious to give me another new perspective on Philip. By far, the majority of the time I will know Philip will be in eternity and there we will know a different Philip than we have known here. I think that it won’t take very long and we will completely forget the suffering and failing body of the boy now.
Joyanna
While processing all the emotions regarding Philip, Joyanna is steadily gaining ground. The balance of dealing with both kids is interesting. One going downhill, one moving forward slightly. Joy is still working to strengthen her neck muscles to hold her head up. She is gaining some strength in her core as well. She can now move her arms voluntarily but only slightly. She did stretch out her fingers some today. She is really working on saying some words again and eating a few different textures of food. She still can’t eat very much at a time (she gets tired) so she is still getting most all nourishment by feeding tube. We have a stander now which is a safe place to put her where I know she will get some good stretching and gain some strength. She has done well in it the last couple of days. We are still uncertain how well her vision is. She can still definitely see some but we have no idea how well. She is on a 2 week fall break right now. She gets so much stimulation and interaction at school. Please pray that she doesn’t lose ground while she is away. So far, she seems to be doing okay. I have been trying to specifically work with her a little bit each day so that she is working on some things to move forward.
Ethan
I certainly want to praise the Lord here because it finally clicked and Ethan is using the potty. I still don’t want to give any advice but we’ve made it at least. He rarely has accidents and is working toward his amazing goal of sleeping on the top bunk if he can stay clean and dry for a couple of months. After the summer time TV season and American Ninja Warrior, he wants to be a ninja and Ben even built him a “ninja course” in the backyard. He actually has pretty good skills for being 3. He must take after his daddy. Now that Philip has Elizabeth to care for him and Joyanna is in school most of the time, Ethan and I get to go and do some things. We’re planning a trip to the zoo soon. We’ve also visited several area parks to see which playgrounds have the best ninja things! He loves working puzzles and is learning to tell knock-knock jokes. So funny! If you get to see him, have him tell you a joke. Hopefully, it’s the Ivan knock-knock joke and hopefully you have a few minutes!!!! He’s a very energetic 3-year-old. I think that’s redundant! We go and find ninja playgrounds just to work some of that energy out in a profitable way.
And so our story continues. God has written it. We hope to follow along with His script. One day at a time.
My brother-in-law (and pastor) told a story from the pulpit a couple of Sundays ago. He was running a half marathon and the last half seemed impossible. He was listening to some music while running and the song below started playing in the middle of the playlist he was listening to. At the time, he was running beside Children’s Hospital, a frequent place for our children’s care. He began to think about Philip and his race. The beginning of his life seemed pretty effortless but this last half has certainly been difficult. What a good parallel. The song helped him to go on and finish the race. I’ve decided to begin every day now by listening to the song and meditating on its truth throughout the day.
Stay Close To Me
Lord, I knew a time like this would surely come my way
When in disbelief, I'd watch my whole life change
I thought I'd have the words to tell You how I feel
But the only thing my heart is telling me to say is
Chorus
Lord stay close to me, as I journey through the darkness of this great unknown
Lord, stay close to me, though I've placed my faith in You, I feel so all alone
My heart trembles like a child as I walk each scary mile
And the only prayer my lips can find to speak is Lord, stay close to me
I guess that I could ask You for some miracle
To even take away this trial that I face
But Lord, I know that You alone know what I need
So would You hold me tight as I journey through this place
Chorus
Oh Lord, when I'm so scared, please be there, Lord
So I can rest in the promise, the promise that You care
Lord I know that I can make it through if all I have is You
Chorus
LEGACY FIVE