Tag Archives: PANDAS

One Chapter

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Books are divided into chapters much like life. We go through each one not knowing how it will play out. And how one chapter ends will determine if we want to continue turning the page.

When I wrote my book, Through The Eyes Of Grace, about the life of my maternal grandmother, my sister told me she had stopped reading. When I asked why, she said she couldn’t get past one chapter that was such a horrible part of her story. I told her she needed to keep going because this was the worst part of the story. Grace didn’t stay in this hard place, but God led her through the valley to green pastures.

The point is to keep going!

I am on a similar path. I’ve made it through a really dark valley the past three years:

  • We have a granddaughter who faced the fight for her life and sanity with PANDAS
  • Our grandson was born a micro-preemie with several mental and physical challenges due to CMV
  • We lost two parents
  • We lost my brother to COVID
  • A pandemic shut the world down for a season
  • We closed two estates and sold three homes
  • We moved three family members – two across state lines, one across town

And we’re not finished yet. I realized today that these are all chapters of the story God is writing of my life. I can choose to engage with it or withdraw. To be honest there are days when all I want is for life to go as planned, as I’ve planned. But this isn’t reality. Life is made up of ups and downs and they’re not for nothing. They have a purpose if I’m willing to do the hard work to find out–to turn the page.

Ann Voskamp’s new book is titled, Waymaker. It is a timely read for me as I’m finding connections all through her story to mine. One in particular is what she calls living SACRED lives. It’s an acrostic for

Stillness – to know God

Attentiveness – to hear God

Cruciformity – to surrender to God

Revelation – to see God

Examine – to return to God

Doxology – to thank God

Ah, just typing out this sacred process fills my heart with an expectancy. Like getting to the end of one chapter and diving right in to the next because you can’t wait to see what happens. I am realizing that God is leading me through the valley to green pastures, but He wants me to learn the lessons of the valley. This comes by spending SACRED time with Him.

I have one chapter left in Waymaker, and I’m hesitant for it to end. I have cried through page after page when her pain mirrored mine. I have anticipated the Word becoming real to her in her time of need. I have been thrilled as she connected the dots of God’s faithfulness to her in her darkest times. And I have nodded in agreement with the lessons she learned acknowledging it was all worth it .

We are all growing into the person God made us to be. But we can’t get stuck in one chapter–whether we love the chapter and don’t want it to end, or it’s a horrible chapter and we want to quit because we are weary and afraid of what will happen next. No. Read on, press on.

“But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus.” – Philippians 3:13 – 14 ESV

Tweet this: Looking back keeps us from moving forward.

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Interviews

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I’ve had two recent interviews that I need to share with you. They were both significant moments where time seemed to stand still as I listened to myself answer questions from across the screen or room. Stories of the last three years and God’s faithfulness in each step.

The first interview was with my husband. A friend who hosts a podcast, Counseling Over Coffee, asked if we would be willing to share what it’s been like to have a grandchild with special needs. I like what her daughter, who has two boys on the spectrum called him, not disabled, but different-abled. Elias has continued to surpass expectations. We had so much to share our interview quickly became a two-episodes. You can hear the first interview here.

The second interview was unexpected and one of those “connect-the-dots of God’s faithfulness to me” moments.

Norah is our second oldest grand-daughter. She will be 15 next month which in itself is huge! Almost three years ago she battled a wicked disease called PANDAS. It is a miracle she has survived these past three years. Most of you are aware of this part of her life. If not, you can read it here.

She was given an 8th grade assignment to interview a grandparent. She came up with all the questions and asked them to me over Facetime. We got off to a good start…

“What year we’re you born?” 1959.

“Where were you born?” Orlando.

“How do you come to know Jesus?” This is when time seemed to slow to a crawl.

I realized Norah was asking me all the questions I regretted never asking my own grandmother. She died when I was 19. I was her youngest so she was 90 and had lived a full life. I just didn’t hear the answers to these questions until she had died.

I regretted my missed opportunity. How I wished time had slowed in that season of my life to ask such questions.

“How did you and Papa meet?“ We met at a Jesus Festival held here in Orlando.

“Have you ever seen God do a miracle?” Yes! I’m talking to her now!

Just this exchange was a moment—me sharing with her the miracle we both saw from two different perspectives.

“What gifts has God given you?” In 1989 God impressed on me that He had given me a gift of writing. He said He wanted me to keep a journal. And I’m still writing to this day—I am currently on my 78th journal.”

“You have 78 journals?” I do. I realized that writer’s write and God wanted me to learn how to write by writing. She smiled.

Through all my years of journaling I learned how to write, and this allowed me to finally write my grandmother’s story in my book titled, Through The Eyes Of Grace. It took me 12 years, and my Mom was the first to read it. To say it was my life-long dream would be an understatement. I have recorded with words the story I never took the time to discover when she was alive. But God helped me uncover it one question at a time.

What questions come to mind when you consider the story of your life? Do your children know the answers? Do your grandchildren? I encourage you to write them down so when they finally think to ask, the answers will be available for them to discover.

I Hate Pandas

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Now before you click away, let me explain. I am an animal lover and panda bears are the cutest. I was even able to visit the National Zoo in Washington D.C. as a kid to see the two pandas China loaned to us in the 70’s.

So why do I hate PANDAS? It is an acronym for what our 12 year old granddaughter came down with in the summer of 2019. It stands for Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep. That is a mouthful for the most horrific time in our family’s life.

When we were given the prompt to talk about an adversity we had endured, I knew what I would write about. I’m just not sure I can tell the whole story–partly because this is my granddaughter’s story. It’s her’s to tell when she is ready and old enough to process it all. And partly because it’s hard to go there. So for the sake of getting the word out about this disorder and to help other’s who may be facing it and not know it yet, I will share my Nana’s heart on the matter.

I got a phone from my daughter telling me how concerned she was about her oldest daughter. She told me she woke up one morning paranoid, crying, in severe pain and unable to get herself dressed for school.

You must know a little background: she is a driven young lady, makes good grades, plays volleyball and loves the independence she is gaining as a pre-teen. But suddenly she reverted back to a 6 year old. She couldn’t write in cursive. She no longer remembered her multiplication tables and she stopped eating and drinking. She had an unfounded fear of water, so she wouldn’t wash her hair, brush her teeth or drink it unless forced.

In a few short weeks she was unrecognizable and we were all afraid.

Our daughter and her husband were frantically seeking the medical community’s advice through multiple ER visits and pediatrician appointments. But she was declining so rapidly it became impossible to get her to leave the house. She lost 14 pounds in just a few weeks time because she wouldn’t eat. She was fading from us. But God.

Finally while searching for answers, they found a 20/20 special on ABC that featured a story about this strange psychotic response children were having after having strep throat. Our granddaughter had just recovered from a strep infection a couple of weeks before this began. They were drawn to finish watching to find out more, and it was hard to do. The way this disorder effects different children is like having a front row seat to a horror movie, but the characters are children you love.

This show was the answer they needed that led them to a pediatric neurologist in Washington D.C. (ironic given my first paragraph). Miraculously they were accepted by the doctor and she cleared her schedule to see our granddaughter. She said that our granddaughter was one of the worst cases she had ever seen, but since they got her to treatment quickly she was confident she would recover. She also added, but it might take two years.

The most frightening part of all this was not being able to rely on the medical community for the help she needed. Several times the emergency room doctors wanted to admit her to the psychiatric ward. They even questioned our daughter and son-in-law’s quality of care. It was hard to know who to trust. Unfortunately, many still haven’t heard of PANDAS, and insurance doesn’t cover the expenses either. It was difficult on so many levels. This is why I tell my part of the story as often as I can and to whoever will listen.

It has now been two years and our granddaughter is fully recovered, like her doctor said. It took time, treatments and lots of donations given by friends and family to see her through. But God! He orchestrated every detail and every step. He carried us through this dark valley of the shadow of death and rescued her from the grip of PANDAS.

For more information on PANDAS please visit the Pandas Network website. And if you know of any children who suffer with strep on a recurring basis, make sure they get retested after their initial round of antibiotics to make sure it is gone. I hate PANDAS and will do anything I can to get the word out. Please share this post if you feel so led. This Nana is grateful our precious granddaughter has recovered. Not all children do; their nightmare continues…

This is my 16th post in The Ultimate Blog Challenge to post everyday in November.

Photo by Fabian Centeno on Unsplash