A Letter To My Grandson on His 2nd Birthday

Dear Elias,

Happy Birthday, Elias

I’ll never forget hearing your Dad tell me over the phone, “His name is Elias Angel.” He said it with such certainty that I took notice. Your Mom was still unconscious from an emergency C-section. I was keeping your Dad company by phone as he waited alone in the middle of the night for news.

Elias means The Lord is my God. Angel means Messenger from God. I can’t help but wonder if your life isn’t a message sent to us by our Heavenly Father letting us know more of Him.

Elias in the NICU – tiny warrior

When your parents brought you home after 116 days in the NICU, I couldn’t wait to see you in person. You see, you were born right in the middle of a worldwide pandemic caused by a wicked virus called COVID-19. No one but your parents were allowed in the hospital to see you. I stared at every photo your Mommy sent to me. I caressed your sweet face in my heart as I lifted my prayers to the One who created you.

Another virus caused you to have many health problems. CMV. It is a virus that is minor in its effects to adults, but most often fatal for unborn babies. At 24 weeks and 5 days God decided to rescue you from this virus. Once you were born the meds were administered to stop CMV in its tracks. But the damage done was irreversible. At least that is what we were told.

Yes. It is confirmed by MRIs that you have microcephaly and only 40% of your brain mass. (See Ultra-sound photo above)

Yes. It is most likely to be confirmed as you turn two that you also have Cerebral Palsy.

But God. When we see your cognitive ability, the way you look at us and react to what we do and say is nothing but miraculous. Yes. You can do more than they thought. But your limitations are also many: You can’t sit. You can’t talk. You can’t walk. You can’t swallow food. But God. He is writing your story to a watching world.

Hundreds all over the globe from California to the Bahamas, to the faraway country of Ukraine have leaned in to hear every update your Mom writes. They want to watch what our amazing God will do. We have prayed for miracles. We have cried on our knees for His will to be done in your life. And I just realized something huge–God has answered our prayers. You, my sweet grandson, are a miracle. Like Tiny Tim from A Christmas Carol, you are teaching all of us how to rejoice in long-suffering and how to have joy in the midst of pain.

When you cock your head to the side and smile at me the way you do, it’s as if you’re looking deep into my heart saying, “It’s going to be okay, Nana.” When I hold you and snuggle I pray for God to help us help you to the best of our ability. And He has.

When your eye began to bulge and your Mom asked if I thought it was bulging, I prayed, “Please, Lord. Don’t let this be cancer.” But it was and now we are walking with you through your silent battle with this beast called Rhabdomyosarcoma. You can’t tell us what hurts. It is hard not knowing what you need when you need it.

But God. I find comfort in knowing that He knows what you need and He is working miracles everyday that you continue to fight. The joy on your face comes and goes now, and it’s in those moments when all I see is your boo-boo face, that I want to cry and take the pain for you. But I can’t.

Your life is speaking volumes to all of us about perseverance and hope that doesn’t fade. And you haven’t spoken a word.

Two years now I have loved you, and I will continue to love you for all eternity. But my most important prayer for you, sweet Elias Angel, is that you will know the love of your Heavenly Father who dwells in the secret places with you. He is always there and comforts you in all your afflictions. You have a godly inheritance that will not fade. It is being kept in Heaven for you. So stay the course Elias, and I will be by your side to sing your song to you every day if you like. That’s what Nana’s do. “God bless us, every one.”

Nana loves Elias Angel

He’s as sweet as he can be

When he was born he won my heart

Tiny Warrior (Super Hero) from the start

I thank God He brought you to our family

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Pleasant Places

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.

https://www.gofundme.com/f/elias-angel-fight-cancer