Motherhood with a Special Needs Child | ashleydecollibus.com

Motherhood with a Special Needs Child

Family Life

Down syndrome, Family Life, Parenting

Shattering the misconceptions about special needs is one of my passions…

I love watching movies like “Wonder” with my kids and listening to them talk about how they would defend the little boy who was being bullied. I’ve always been very open with my kids and I love the way they view the world! They see humans. Not race, not color, not the disability… Just people.

With that being said, I’m excited to introduce a new series today! Guest blogger and super mom, Jessica Huerbana, has graciously agreed to share her journey, shatter our misconceptions and answer any questions we may have about life with a special needs child.

I first met Jessica when she was in search of a wedding photographer. The first thing I noticed about this amazing woman was her grace. She has a calming presence about her that draws you in. There is no judgment, only love. It’s a blessing to be able to journey through life with Jessica and Romeo as their photographer, capturing life’s biggest events.

If you or someone you know is struggling with what motherhood will look like with a special needs child, I encourage you to follow this journey…

The Day that Changed Our Lives Forever

OUR DAUGHTER ELEANOR WAS 11 DAYS OLD. I folded laundry on the floor of her nursery while baby and daddy napped together.

The phone rang. Her pediatrician had news to share. 

“Eleanor tested positive for Down syndrome.”

Those six words stopped my heart and started our unexpected journey. 

I covered my mouth and started weeping. Romeo ran over to sit with me. As he leaned in, I held back tears, whispering, “Eleanor has Down syndrome.” I gave him the phone while he handed me our newborn. 

The entire conversation with her pediatrician was a blur. All I could do was hold my sweet baby close and cry, secretly hoping there had been a mistake. “We’ll need to start running tests immediately”, she said. “This means that there is a long road ahead of you”, she explained.  

When the call ended, we wept. Hard. I was shaking and terrified. How could this little bundle have special needs? On the floor of our daughter’s nursery, surrounded by laundry, I crumbled into my husband.

Romeo, my rock, wrapped us in his arms and prayed over our family through tears. I will never forget when he said, “…Thank you, Lord, for entrusting her to us and finding us worthy of her.” 

Motherhood with a Special Needs Child

Here is my confession… 

The days and weeks that followed were filled with grief. Each time I looked at a picture of a child with Down syndrome, tears would flow. I would find myself crying over Eleanor when I held her… Even when I looked at her.

Not because of who she was; I love every single thing about our precious rainbow baby. But because I had to mourn the life I had planned for her. More honestly speaking, I needed to mourn what I had planned for my future.

We were told of a future filled with doctor appointments, specialists, and needed therapy. This overwhelmed me. That was not a part of my plan. “It wasn’t supposed to be this way,” the lie would scream. On and on they went. “Will she make friends?” “Will she be teased?” “What will life look like for her?” “For us?”

Motherhood with a Special Needs Child

I did not want the “extra”. I wanted a simple life tied with a ribbon; one that was planned. I allowed myself to be controlled by my fears of the unknown.

Then it hit me. No more doubts and barriers… My eyes were opened to the truth through Eleanor’s diagnosis. There is so much more to Down syndrome than people may tell you. If only I would have clung to hope and not fear during those first few months.

When Eleanor was two months old, she smiled back at me for the first time. And right then and there, that’s when I saw it. God’s immense love; His heart gifted to us. It was almost as if He whispered, “Now you can see the world through eyes of unconditional love.”

We were in uncharted, unknown waters. 

I think the Lord does that purposefully. Because should we know every answer to this life-changing event, we would have no need for His sovereign grace.  

Motherhood with a Special Needs Child

“But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weakness, so that Christ’s power may rest on me.” 2 Corinthians 12:9  

So here we are. Our first child on this side of heaven has Down syndrome. And now we boast in our weaknesses and shortcomings, all the more gladly, I might add. 

Because His grace is sufficient. Sufficient to get us through the night. To give us peace and comfort when we are unsure. Sufficient in guiding us through this unexpected journey. Sufficient in helping Eleanor grow and thrive.

The news of her diagnosis came two days before celebrating my first Mother’s Day to a child on this side of heaven.

At that time, I am ashamed now to say, I was so very bitter. I was angry and so afraid. I felt the joy of that day was robbed from me. Truthfully, I thought it was cruel. Why couldn’t the news have waited three more days?

And now, one year later, I know that was God’s gift to me. He welcomed me into the sweetest surprise of motherhood: to understand my daughter fully and to celebrate her life as a whole. He opened up this mother’s heart and gifted me eyes to see. 

Motherhood with a Special Needs Child

We prayed for a child, and that is precisely what the Lord blessed us with. Our daughter is a beautiful and joyful baby girl.

Please don’t feel sorry for us. We’re not. 

The day that changed our lives forever was the day, our eyes were opened.

Eleanor Fae is God’s favor wrapped in pink, with an extra dash of a chromosome.  

After all, the only difference between ordinary and extraordinary is a little “extra.” 


Guest Blogger - Jessica Huerbana

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hey, i'm ashley

Photographer, Dreamer, Entrepreneur

Specializing in Luxury Weddings, Elopements & Portraits. I never stop asking "why" or "why not". I don't believe in "can't" and I'm a realist who sees the glass half full. Just like Belle (where my Disney peeps at?!) I thought "there must be more to life" and after searching for "more" I decided to step out and create it.
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