Tag Archives: Elias Angel

A Letter to my Grandson on his 3rd Birthday

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Dear Elias,

It has been 3 years since I first met you. What a journey you’ve traveled thus far. Through the NICU stay in Tulsa for 116 days, to your Cancer battle in the PICU and the Cancer floors of Advent Health, You have found a way into the hearts of all who know you.

You are still non-verbal, non-mobile and can’t sit on your own. The only food you enjoy comes through your gtube, something your body tolerates very well; You now weigh about 33 lbs. making it difficult for your Mom to lift you for long. I miss our close snuggles on the couch as you would slowly fall asleep in my arms. You have grown so much that you hang off on both sides of my lap and my arm goes to sleep before you do. You much prefer to snuggle with your weighted animals in your own big boy bed. Actually, you still prefer Mom and Dad’s big king-size bed, but they are working to get you to stay in your own bed now.

Your favorite movies are Sing 2, Toy Story 2 (Buzz Lightyear is the best!) and Encanto. Your favorite Children’s programs are Miss Rachel, Blues Clues and Mickey Mouse Clubhouse. You love listening to your Mom or Papa Tom play drums on any solid surface. When you laugh your whole body follows along lifting both legs up to your belly. Your laughter is contagious.

You are a coffee lover. Every morning you stare at Mom’s coffee hoping she’ll give you a taste or two or three on a spoon. I tried giving you some Cold Brew Coffee Ice Cream and I thought you would never stop smiling. You didn’t know something so good existed.

This week you will begin pre-school two days a week. Mom is a little nervous about leaving you for several hours, but she is ready for some time to herself. It has been a long time since she’s done much of anything without you right by her side, and she has loved every minute. Yet she is tired. We all need rest and this will be her time to do so.

Elias, your birthday yesterday was so much fun. You loved all the attention, the balloons, the karaoke singing, the candles, the opening of presents and most of all–life itself. You embrace every moment as if it is a gift, as we embrace you as our gift and inspiration. Keep pushing forward one small accomplishment at a time. We believe you will do great things.

I love you Elias Angel. Happy Birthday!

Nana

A Letter To My Grandson on His 2nd Birthday

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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

About Elias

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Yesterday I invited questions from readers, and I received some outstanding ones. Thank you all!

Tamara asked about our youngest grandson Elias.

Our daughter and her husband were expecting their first baby on January 29, 2021. Tom and I were so excited to finally visit them in Arkansas to see Heather pregnant. It was such a happy anticipation to welcome grand baby #9 and watch Matt and Heather receive the blessing of parenthood.

After our wonderful visit. I got a phone from her saying the doctor was putting her on bed rest. I flew out to take care of her and to help keep her baby safe and secure.

But what we didn’t realize was God was working to rescue Elias from a virus he had contracted during the first trimester called CMV. Babies that go full term with this virus often have very serious health disabilities including hearing loss, lung, liver and brain damage. Some don’t survive.

Elias Angel was born on October 14, 2020, at 24 weeks and 5 days. He was 1 lb 6.6 ozs and 12” long. Roughly the size of a water bottle.

Elias and Ollie Octopus at one month old

“For you formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well.”
‭‭Psalm‬ ‭139:13-14‬ ‭ESV‬‬

The NICU staff was amazing. Our daughter calls them God’s angels. They began Elias on medication right away to fight the effects of CMV. Everyday he surprised all of us making forward progress.

From his little NICU cubicle we were able to watch God do what He normally does in the “secret place” as Psalm 139 declares. We were in awe of this miracle being formed before us.

He was in the NICU a total of 116 days. When Matt and Heather were finally able to drive him home from Oklahoma to Arkansas (a two hour drive), Papa and Nana were there waiting to see and hold him for the first time. What a moment that was!

He was so tiny and quiet. The ventilator and his immature core muscles made his voice very weak. The only way we knew he was crying was when his heart rate monitor would go off. His care required 24 hour diligence with feeds and medications.

Fast forward to today, Elias…

  • Is still making forward progress, thanks to an amazing team of doctors and therapists
  • can hear well
  • can see and recognize people
  • Has the cutest personality
  • Loves to belly laugh (still quiet but now he’s audible)
  • Is trying his best to crawl
  • Is eating baby food
  • Has two teeth
  • Loves books
  • And kisses Mommy every chance he gets

His prognosis is wait and see. Every child in his condition is unique. There are no certainties. But one thing we know! But God! He has been leading every step of Elias’ treatment since the day He was conceived. He is our miracle baby and one whom we call our Tiny Warrior.

He now weighs over 14 lbs at 13 months of age.

I write a song for each of my grandchildren. This is Elias’ song, sung to the tune, Jesus Loves The Little Children…

🎶Nana loves Elias Angel. He’s as sweet as he can be. When he was born he won my heart, tiny warrior from the start. I thank God He brought you to our family!🎶

This is my 23rd post in The Ultimate Blog Challenge to write everyday in November.