You are not alone.

I wish I could be there to hold your hand and listen. I wish I could be there to give you a hug, pray with you and tell you it will be alright and that I understand.

My son Stephen was 3 ½ years old when he suffered a traumatic brain injury due to a rare disease called Isovaleric Acidemia (IVA) that could have been detected at birth through newborn screening. It left him with severe disabilities and complex medical issues. I have come to realize that life is not always fair, but my family is blessed and our Stephen is a blessing. His life has taken us on a path far from what we imagined, but one where Christ was waiting to walk by our side. He did not promise that the journey would be easy, but that we would not be alone.

Life has been quite different, one full of fears and uncertainties amidst the joys and milestones. The hardship and sadness of raising a child with a life-threatening illness is real as we endure what I call an eternal grief… Grief of what we lost in Stephen, grief of all of the things we missed out on with him, and fear of one day losing him. What has not changed is God’s presence in our lives. He has always been with us… Every step of the way. Know that He is with you. He even sent His own son to be with us.

I reach out to Christ during the most difficult moments knowing He has full control of every aspect of our lives, especially Stephen’s. God is there and it takes great strength to feel Him and trust in Him. Oh, how comforting it is when we can truly hand it all over to Him.

Clinging to faith in God allows me to see His presence and greater purpose for my son’s life and how perfect Stephen is in God’s eyes.

As a mother, I will always worry, but while I worry, I will pray and I will pray for you. Prayer helps us draw strength and brings us back to hope, which enables us to feel God’s perfect and unconditional love. God bless you.

~ Jana Monaco
Mother of Stephen Monaco


Heavenly Father,
I ask You to please lift these parents You have chosen for Your most precious and vulnerable children, created in your likeness.
Help them to feel Your loving arms around them during the most difficult and sad days.
Open their eyes to the blessings You bestow on them each day.
Strengthen them when they are physically and emotionally weak.
Fill them with Your grace, peace, love and mercy.
Please comfort their hearts and minds. May they feel Your everlasting love and presence each day.
In Jesus’ name,

Isaiah 40:31

But those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.