Benaiah’s Story

Site created on September 9, 2021

Benaiah’s Story

Benaiah Daniel Ramos
Born 9/16/2018

Our Sweet little boy spent his 3rd birthday very differently than was originally planned.

This unexpected journey started the last weekend in August, a mere 3 months ago…

It all started with Benaiah getting sick, it was originally thought to be gastro related but when it seemed to take a turn to something more serious we headed to St. Louis Children’s Hospital. Once there it was test after test to determine what the root cause was.

We have an amazing team of doctors. At that time they were determined to stay the course until they figured things out. During this waiting game we faced some very dark days. Since that time we have faced many more.

Our source of strength has always been in our deep Christian Faith. We put the word out for prayer, not just for our little boy and his needs but also for peace during the storm. We placed Benaiah into God’s hand before he was even born and have continued to do so each day.

For some this might have shaken their faith but for us it only strengthened, deepened ours. OUR GOD IS IN CONTROL. This means we get to rest, trust in His plan for Benaiah’s life.

This journey, Benaiah’s unexpected journey, has taken many twists and turns but we have never wavered in our resolve and belief that God has a very specific plan for his life.

Where are we today in the process? On Sep 2 he was diagnosed with Acute Megakaryoblastic Leukemia, AMKL with two rare genetic malformations. Benaiah has gone through 3 rounds of chemotherapy, we are preparing for the 4th round which includes a bone marrow transplant. On Dec. 1 he had a permanent shunt placed.

As we are walking through this we have had to make many adjustments to our life, one of which is moving our 12 year old daughter Elizabeth-Joy (EJ) in with Jenna’s parents in Northern Illinois. We cannot express how difficult it is to be away from her. We are a VERY close family and the pain we feel is real.

She is thriving and living the life of a 12 year old. She is working to keep her grades up (homeschooled), making new friends and staying in touch with old friends. We believe the God of comfort and peace is helping her daily.

One of our highlights is when Jenna’s mom brings EJ down for a visit. She has become very well versed in the hospital routine and brings a bright spot with her visits. Benaiah LOVES his Sissy.

As we continue this journey we stand on the scripture:

Fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10, ESV

Newest Update

Journal entry by Janice Maravillas

Away in a manger, no crib for a bed,

The little Lord Jesus laid down His sweet head.

The stars in the sky looked down where He lay,

The little Lord Jesus asleep in the hay.

The cattle are lowing, the baby awakes,

But little Lord Jesus no crying He makes.

I love Thee, Lord Jesus, look down from the sky

And stay by my cradle 'til morning is nigh.

Be near me, Lord Jesus, I ask Thee to stay.

Close by me forever, and love me, I pray.

Bless all the dear children in thy tender care,

And take us to heaven, to live with Thee there.

When I think of Christmas this year my heart hurts. My children and grandchildren, oh my heart aches for them. They are striving and pushing so hard to put God first, to trust Him and rely on His timing. 

This simple children’s Christmas Hymn suggests that Jesus is always quietly and tenderly caring for our dear children! This holiday season I rest in the trust and hope brought by that small baby, our Savior, so many centuries ago.

🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄

As we transition this week from Thanksgiving to Christmas, our hearts are full of gratitude for the way God has already moved in our entire families lives. We look ahead to this blessed season and all the wonder that it holds. We are so grateful that even though this can be a hard time it can also be a time of great joy.

I have spent time talking with Jenna and hearing of her discussions with Josh about how this Christmas will look. A few things are clear. The following statement is directly from them.

“We know that many would like to lift up Benaiah and shower him with blessings this Christmas. We are firmly secure in knowing he will be abundantly blessed through the Child Life Services here at the hospital. If you feel led to bless our family this holiday season, we would ask you to shift your focus to our daughter Elizabeth-Joy who could really use an extra dose of love this year. Much thanks, Josh and Jen”

I am including a “Christmas Wish List” Link with Elizabeth-Joy’s desires.

I know how much you would like to send a personal gift directly to Josh, Jenna and our brave Benaiah and they would love that. However, they have such limited space in their hospital room. Any extra items can begin to pile up quickly. The added requirement to change rooms every 30 days means they are packing and moving everything each time.

Benny the Brave T-shirts are still available for purchase

The best gift of all that you can give to them is to partner with them in prayer.

For any questions or concerns and EJ's mailing address, please contact me at k3queens@yahoo.com

 

Signed,

Janice (Grandma Mita)


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