To the parents without a happy ending.

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Before my son was born and throughout his short life, I would often search for inspiring stories of people with only one arm who conquered a sport or children with visual impairment who still made their dreams come true. I wanted my son to be the inspirational NICU story, who beat all the odds, and stands thriving today. But that’s not Joshua’s story. It’s not my friend Laura’s story who has two children with Batten’s disease, an always terminal illness. It’s not my friend Kristy’s story whose daughter Abby suffered a stroke in utero, and lives with brain damage, blindness and a myriad of health problems. It’s not my friend Heidi’s story whose baby Elliot died after five days in the NICU.

This is for you, mom’s and dad’s, of children who are warriors, who’ve had to suffer the unimaginable. The unsung heroes. The ones who are up all night dealing with emotional outbursts or a beeping oxygen monitor. The ones who tirelessly fight everyday for their children, enduring countless doctor’s appointments and surgeries and therapies, knowing that the end of this tunnel will just bring a funeral. An empty hole in their heart.

In your heartache, you may not be able to offer people the traditional happy ending, but in you I still see HOPE.

HOPE that despite the unthinkable, you haven’t given up. Hope that in Christ, our children will be healed and we will have a happy ending one day.

I still see LOVE. A love so deep, you will go through anything to give your child the best life they can live, no matter how much sacrifice and suffering it brings to you. People see your love as extraordinary, but this is your baby, your little boy, your little girl, your love at first sight, how could you not love?

I am still INSPIRED by you. It’s not the inspiring story that graces news headlines, but it’s inspiration that it’s possible to keep your faith in God NO MATTER WHAT. I’m inspired by your tenacity to get the best treatments for your child, and your courage in making decisions no parent should ever have to make. I’m inspired by your perseverance every single day as you watch your child lose abilities instead of gain them.

I only got a small taste of what some parents of children with special needs go through. The constant feeling of being on the edge of your seat. The endless doctor consultations and therapies and bleeping alarms. The feeling of not knowing if you can physically handle the news the doctor is about to tell you. The heartache of seeing your child suffer and being completely unable to help them. The worry that other children may make your child’s life harder by teasing and bullying. This is to you, my friends. Who have endured years of agonizing decisions, of just taking it a day at a time, and years of wishing your child didn’t have to endure this fate. YOU ARE AN INSPIRATION. In the words of my friend Kristy, “It’s going to be ok, even if it’s not ok.” Jesus gives us that hope, that in the end, we WILL have healing, our children WILL be whole and that the best TRULY is, yet to come.

7 thoughts on “To the parents without a happy ending.

  1. Thank you for these words
    Worry has been trying to conquer me this week. But Christ will not let it.
    Reading this morning has given me more of His hope thank you.
    We have a 11 year old son Elijah with Battens
    So much up hill climbing
    Thank you again
    Blessing

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    • Aaron, I can only imagine the up hill climb you face everyday. I’m humbled you could find some encouragement in this post today. Keep holding fast to Christ’s promises. It’s such a struggle to not let worry overtake us. Much love to your little warrior, Elijah. You are all so brave.

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  2. Beautiful ….I lost 2 children to premature birth a son and a daughter my daughter’s twin is a survivor he is blind suffered a stroke in NICU he has autism and spastic cerebral palsy he is 22 years old and God had walked with me every step of the way I was just going to comment beautiful but I thought to share how we are never alone no matter what Jesus is right beside us thank you for this very beautiful story.

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    • Barbara, wow, I am so sorry for your losses. It sounds like you and your son are warriors and what a journey you two have had to walk. You’re right, God is with us and it doesn’t make it easy, but I pray He gives you renewed strength and joy today. Thank you for sharing.

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  3. Pingback: Living life with open hands. | hope from heartache

  4. Both my boys (1 year 4mths apart) were born without immune system… Battled for years… Every week in and out of hospitals… They both got bone marrow transplant…. My eldest did very well but my little one syarted his battle ever since that day… And after very long time Jesus came and took him to heaven… He would have been mentally challenged in every way the specialists said… But God gave me and my husband strengh to do it if it was meant to be… Just as long as we could have ojr little one back… But it was not destined for us

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    • Katinka, I’m so sorry to hear about your loss of your brave boy. I know what it’s like to feel like you’d go through anything just to have your baby back here with you. I hope you and your family are doing well these days.

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