Today my heart is once again clinging to God and His Word for strength, help and comfort.
Elias, our 22 month old grandson, is a fighter. He has been since he was born.
Born at 24 weeks and 5 days, after his water world broke at 22 weeks
He was in the NICU for 116 days
He was born with CMV which led to microcephaly and cerebral palsy
He exudes more joy than most of us on our best days
He is a miracle whom God rescued
Now another challenge has confronted him. He has cancer—rhabdomyosarcoma—behind his left eye to be specific. Of the two strands, his is the one less threatening, but still serious. He had a biopsy of his protruding left eye revealing a 1” tumor intertwined with nerves and blood vessels—inoperable. The pressure in his eye threatens glaucoma.
God rescued him yet again. Heather happened to read the story of a little boy who’s eye started bulging. It turned out he had this same cancer hiding behind the eye. After reading it, Heather thought Elias’ eye looked a little bulged. Her doctors all said to watch it and see if it changed. Most likely it was just swollen with allergens.
Had she not read this story we may not have noticed the threat as quickly. She has tried to go and find this article to no avail. Could it be God was leading her in a miraculous way?
Elias will have to do many more hard things to fight this beast. One happened yesterday when they inserted an NG tube through his right nostril. To say he didn’t like it would be an understatement! I am grateful I wasn’t there to experience his protest. Nana has limits. The good part of this, Elias will get all the nutrition he needs to gain some weight before chemo begins. It is also giving Heather the first break from around the clock feeds since he was born.
What’s next? Tomorrow he will have a bone marrow biopsy as well as a spinal to see if there are any cancer cells hiding there. He will also have a PET scan.
A two week hospital stay is likely this time. And once again we wait.
But God! He is not absent or indifferent. While I can’t say why He allows these things to happen. I can say that He has rescued little Elias for a reason. His joy is infectious, ask anyone who has followed his story—and there are many! He has shown us all how to keep going making the most of each day.
I love this little guy so much.
The Lord impressed Psalm 16:5-6 on me yesterday at church:
“The Lord is my chosen portion and my cup; you hold my lot. The lines have fallen for me in pleasant places; indeed, I have a beautiful inheritance.” - Psalm 16:5-6 ESV
My circumstances are not the boundary lines around me. If they were it would be hard to agree with David that my lines are pleasant places. No. God has also said in His Word that He goes before me and behind me. HE is the lines that surround me giving me boundaries of His grace. I can rest knowing He’s my Shepherd no matter what threatens.
Indeed, the lines have fallen in Pleasant Places!
If you would like to help, our oldest daughter set up a Go Fund Me campaign to provide for their many needs in the months to come.
As most of you know, all 7 of my grandchildren now live far away from me. It has been a difficult and emotional transition for me–one where I’ve shed many tears, and prayed often for God to help me see this new season from His perspective. And He has!
What I miss most as the Faraway Nana is being able to do fun things with them in my home–like baking, reading, picking flowers, going for walks around the block, watching their favorite movies while munching on hot, buttered popcorn, coloring pictures and playing Polly Pockets–to name just a few.
I was having one of those days when I was feeling particularly sorry for myself when God dropped an idea into my head.My four oldest grandchildren tell me often that they miss Nana’s House, which has always been like a jab to heart. But this time God gave me an idea, and a new tradition was born.
Nana’s House Newsletter
I told Bristol, Norah, Willow and Bradley that if they couldn’t come to Nana’s House, then Nana’s House would come to them. 🙂 I began publishing a monthly newsletter called Nana’s House. In it I put personal notes, little contests, crafts and something they can all enjoy from the 7 year olds down to the babies. When finished I stuff all the supplies needed for the crafts as well as candy treats into the Priority Mail Flat Rate small box and send it on its way. I take a picture of the receipt with the tracking number and text it to my daughters, so the kids can know when their little package will arrive.
This has helped me more that I could have ever imagined. I still get to go to the craft store and pick out something special for them to do. I still get to highlight funny things they’ve said or done. I still get to hear their voices squeal with excitement when they see another newsletter is on its way. The only thing I haven’t figured out how to do is hug their little necks and do nosies with them. Which brings me to the next thing I’ve done to help with the distance…
Skyping
What fun we have had Skyping, and now using Google Hangouts (which works better when you are connecting three phones). We have colored Easter Eggs together, baked cookies and read books. I’m currently reading a series of books to the girls titled, The Doll People. They color while I read to them, and it has been wonderful. I love how they have absorbed the story and beg me, “Nana, just one more chapter–pleeeaaassssee?” We’re currently on book two, The Meanest Doll In The World. After this there are two more, so I think we’ll be able to enjoy this adventure together for quite a while.
Facetime
My younger grandchildren love to talk with Nana on FaceTime because they can carry me with them to their room to see their new toys. I have had the best conversations with Stella (aged 2) all the while looking at the ceiling.
She takes the phone to her room, sets me on her kitchen set and fixes me the best cups of coffee. I’m always asking her to prop me up so I can see her face. 🙂 We are still working on that one, but I wouldn’t trade staring at her bedroom ceiling for anything. She’s precious.
Writing Letters
I love writing. I love penmanship. I’ve heard that public schools are no longer teaching handwriting, and it makes me sad to realize this is going away. I always loved learning to write my letters. I practiced over and over again, until I like how it looked. This gave me an idea to start writing letters to my grandchildren once they learn to read. I print until they learn cursive writing. Once they do, I will write to them in cursive. The younger ones who can’t yet read, don’t like that the older ones get this special treat. But, I pray it will motivate them to learn to read for themselves. Cards are also a fun treat for the younger ones when it’s not their birthdays. Such an inexpensive way to show them how special they are to me.
Final Thoughts
Being far away from those you love is not easy, especially since they grow up so fast. For a long time I resisted finding joy in the distance, but I’m beginning to see that there is much good that happens when miles separate you from those you love. In this day and age we can still connect in ways my grandmother would have never imagined possible. When she moved away from her family to Jenks, Oklahoma, she didn’t know if she would ever see their faces or hear their voices again. Their only means of communication was through snail mail–although back then, it was delivered by horse. We are blessed that no matter how faraway you are, you can connect in so many ways as often as you like. What a small world.
Are you separated from your little people? I hope my ideas will inspire you to embrace the distance and make it something special.
My younger grandchildren love to talk with Nana on FaceTime because they can carry me with them to their room to see their new toys. I have had the best conversations with Stella (aged 2) all the while looking at the ceiling.
Write from the heart 