I woke up on Sunday, May 8 feeling absolutely pulverized. Since September, we have been trying our darndest to live a semi-normal life while searching for answers to Hannah’s health issues. If you’ve followed along, you know that our college-sophomore daughter got sick just after classes started at Pepperdine University last fall. After three weeks of illness in Southern California with no answers, I had to help Hannah withdraw from classes, come home and begin searching for answers here. To make a long story short, our 20-year-old daughter was diagnosed with a rare, neurological auto-immune disorder (CIDP — Chronic Inflammatory Demyelinating Polyneuropathy) and began regular IVIG treatments. In late November, she began having seizures. We’ve been to countless doctors (including Neurology at Mayo Clinic), had the gamut of tests run, and still there are more questions than answers. Currently, Hannah is seeing a cardiologist, who just hooked her up to a 30-day event monitor (Hannah’s heart will be monitored at all times for 30 days), has scheduled an echo cardiogram and tilt-table test, and has us keeping track of her blood pressure multiple times a day. She also had another EMG test this week after being off of IVIG for the past 3 months (per Mayo Clinic’s suggestion). That test still points to CIDP, so Hannah will begin regular IVIG treatments again next month.
The hardest part about all of this has been not knowing what we’re dealing with. And, It. Has. Been. Hard!
So, Mother’s Day was coming. A few weeks before, Hannah had nearly one week of a reprieve from most of her symptoms. I was hopeful.
Lord, please be finished doing whatever work you’re doing. Please do NOT let the numbness and tingling return. Please give Hannah strength back in her body. Please HEAL OUR DAUGHTER!
I even went so far as to remind the Lord what day was coming.
Lord, you know Mother’s Day is right around the corner. I WILL be content with whatever you have in store, but oh, Abba Father, you know the desire of my heart. All I want is for Hannah to be healed. Would you see fit to give me this gift for Mother’s Day?
Hannah had spent an entire week sleeping, resting, saving up her energy so that she could attend a home school prom (ages 15-20) with her brothers and some friends. That special night out happened to be the night before Mother’s Day. Hannah had a blast. Her numbness and tingling had returned, but she danced and laughed, and danced and laughed. A great time, but the night took everything out of her.
There I was, getting ready for a Mother’s Day breakfast (cooked up by B and sons for Grandma and me) and for church immediately after, when Hannah came into my room.
Mom, Happy Mother’s Day.
I know we all planned to be together today, but I’m not sure what to do. I just don’t have it in me to get out of bed yet.
All I could say was, I know, Hannah. And I understand. Go back to bed. We’ll spend time together later.
Mother’s Day breakfast was delicious. There were nine of us around our table, laughing, sharing, talking. And all I could think was…
There should be ten of us.
After breakfast, seven Shultzes entered the doors at Cherry Creek Pres. and filed into a back pew (breakfast had gone late and church was packed by the time we got there). Worship began and I tried to look down the row and thank the Lord for my family — the gift of worshiping together. Almost all eight of us. But, not quite. And all I could think was…
There should be eight of us.
We are in a season of life in which there is a darkness over everything. The Lord comes along side and gives us joy in the midst of the pain. He has rallied some of His people around us. He has given my husband a full-time coaching position. He gave us (in advance) two extra cars for this year, knowing our need and meeting it fully. He has provided monetarily (sometimes many times at the 11th hour). He has given the gift of amazing friends for our sons and a theater program that we are all blessed by. He has given our youngest two a passion for soccer, and allowed us to watch them play with other soccer parents we love. He has given our oldest daughter a good job and an even better man who will become part of our family in July. He has given Hannah rest, and a college scholarship that’s being held for her.
We recognize all of these things as gifts to us, and honestly, I think the Lord just knows. He knows the pain we feel. He understands the darkness that is pressing in on us. And, He knows how weak and frail we are. He gives. He gives Himself daily. Momently. And we miss it. In our humanity, we need something more. Something tangible. So, He gives more. He gives tangible. But He doesn’t give that exact thing that we want so badly.
So there I was on Mother’s Day morning. I did not feel like worshiping the God who chose not to give me the gift of a healed daughter. There was this part of me — this very ugly part of me — that wanted to run to the front, grab a microphone and shout a warning to all who would listen:
It’s a SHAM! God is NOT with us! He is NOT good! He is NOT faithful! He does NOT love us!
Thank the Lord that ugly part didn’t win out, but I knew I had a choice to make in that moment. I did not feel our Savior’s presence. I did not feel His goodness. I did not feel His faithfulness. I did not feel His love. But, I know Him. And I know His Word. His Word tells me He is with me, He is good, He is faithful, He is love. I had to remind my heart of these things, so as we began to sing, I looked up at the cross and said, You are with me. You are good. You are faithful. You do love me.
And then, right there in the very back row of our church, I did what I did not feel like doing. I worshiped the God who chose not to give me the gift of a healed daughter.
With tears streaming down my face, I raised my arm (I’m a presbyterian, so it was just one arm. Ha! 🙂 ) and praised the God I know.
Are you in a season of darkness? Do you cry out to the Lord only to hear the sound of silence? Are you waiting and watching and wondering? You are not alone!
What I have come to learn in these days of grief is that I cannot follow my heart. I have to lead it! When I do not feel His presence, His goodness, His faithfulness, His love, I have to remind myself of those things. I have to say aloud, You are with me. You are good. You are faithful. You do love me. I must declare those things or I will get lost in this darkness. And, I must…MUST…continue praising the Lord, even when I do not feel like praising Him.
Brothers and sisters, may the Lord give us the courage to do these things. May He bolster us to live these words out:
Though the darkness has not lifted, YET, I will praise you.
I will extol the Lord at all times;
his praise will always be on my lips.
I will glory in the Lord;
let the afflicted hear and rejoice.
Glorify the Lord with me;
let us exalt his name together.
I loved this blog post. My heart has felt this way a lot in our season as my 9 year old daughter was diagnosed with CRPS earlier this year. It has been a very dark year. So challenging. So hard. But He is faithful. He is good and the just shall Live by faith in Him. He will never utterly forsake. Thank you for sharing your heart. I promise to pray for you and your daughter. I write just a little of my heart at sacredinthechaos.blogspot.com if you
Ever want to visit. May the Lord bless you and keep you and make His face to shine upon you and give you peace. ❤️
Thank you, Theresa! I appreciate your encouraging words. I’m sorry to hear about your daughter’s diagnosis, but you are absolutely right! This year has been dark. This life can be so hard, but He IS faithful and good! May the Lord bless you and yours, as well. I look forward to reading your blog. Much love from our family here at Families Alive.
Love your heart and encouragement to walk in obedience to trust Him…regardless of how we are feeling. “Lead our hearts, don’t follow them.” Love that. Praying often for you and for Hannah’s healing.
Thank you, sweet friend!