Introducing Isabella Marie Full

Sometimes....maybe most of the time....our prayers are answered in ways we never expect.


2 years ago in January a baby girl was born 10 weeks early in a hotel weighing 3 lbs 4 oz. Somehow (I think we all know how), she survived. She was placed into custody of child protective services, a social worker overseeing her medical care, nurses and doctors coming and going, but no mother to hold or care for her. Then, doctors discovered she had down syndrome. So far, its safe to say it was a difficult start to life. She overcame each health challenge and complication, slowly but steadily, sometimes with setbacks, but she slowly grew and got stronger.


We learned about her birth and began to pray. She is a biological sibling to our son Nathaniel, which made her feel like our daughter. I heard that she was tiny and clinging to life and alone in the hospital and I wanted nothing more than to race down there and hold her in my arms. But I know "the system" and it doesn't work like that. So we waited. And prayed. And waited. And almost went crazy thinking about her lying there alone. I didn't even know her name. That's when I prayed: "She needs a mother. If I cannot be there for her, Mary, please be her mother. Let her feel your peace and comfort." And I clung to that prayer that Mary would provide the comfort of a mother that I could not.


We soon found out she had been given a foster family from Sioux Falls who visited her often and loved her a lot. It was a relief to know she was being loved.

 

Finally, we got to meet her in May, still in the NICU.

It was love at first sight. Laying her back down in a hospital crib at the end of the visit and walking away though was not a feeling I ever want to have again.

Then we continued to wait, for paperwork that took MONTHS longer than it was supposed to. Nathaniel got to meet her a little later, still waiting...

Finally, in July she came to our house for her first visit, and permanently in August.

 

 *Ashley Stoel Photography & Design

We spent the next year in custody limbo and then prepared for her to return home to her biological parents but they decided after some visits to allow us to adopt her instead. (Thank you St. Therese!)

I didn't set out to adopt a child with down syndrome. Actually, a child with high medical needs was on our list of "probably cannot accommodate" for foster care. But God began to work on our hearts, and by the time it was our decision we knew He had already made it. She was our daughter.

On March 20 after 2 years of waiting, we finally got to hear the judge say that she would be "our own lawful child".  My sister-in-law gifted us with a beautiful lamp with her name and the phrase "For this child I prayed". It is beautiful, but when I put it up in her room, I lingered on that phrase. "Did I pray for her?" I wondered. Of course after I knew about her, but before she was born? I remember that I prayed for 4 years for Nathaniel, and for 3 years for Samuel, but Samuel had just been 5 months old when this little girl was born, I was wanting to expand our family but probably not so immediately. And I know I didn't pray for a daughter with down syndrome. But the more and more I looked at it I realize I prayed for her for a long time too, I just didn't realize it.

I prayed for patience, and she teaches me and stretches me in that way every day. I prayed for compassion and she requires it. I prayed to better understand the heart of Jesus, and she shows me. I prayed for my children to make a difference in the world, and she already has.
Tonight I read the book "You're Here for a Reason" by Nancy Tillman to my children. Please buy a copy for your kids or someone you love, because the words are so incredibly true: 
"You're here for a reason, you certainly are. The world would be different without you, by far. If not for your hands and your eyes and your feet, the world, like a puzzle, would be incomplete. Even the smallest of things that you do, blossom and multiply far beyond you."
The day after Isabella's adoption was World Down Syndrome Awareness Day.  There was a statistic shared that day that I cannot shake from my mind. The post was titled: "The most dangerous place in the world for a child with down syndrome is his mother's womb." It shared that 92% of babies with down syndrome are aborted and never allowed to live. When I look at my daughters beautiful face, that statistic rattles me. My heart grieves for those mothers that will never receive the gift that was meant for them. I hurt for the world that is different and missing an important part. Most of all, I hurt because it's like the majority of the world is saying Isabella is not a person, and how mistaken they are! She is sweet and so lovingly blows kisses and wipes the faces of her dolls like the most gentle mother. She is wild and crazy when wrestling and chasing her brothers. And she has attitude and makes sure we know it when she wants to get her way. She is the same as all of my children, life (just like it started for her) is just harder.

Over the past two years Bella has worked with Physical, Occupational and Speech Therapists. Low muscle tone from down syndrome makes it much harder to do things like roll over, crawl, sit up, walk, etc. Children with down syndrome have shorter limbs which makes a lot of things more difficult, especially climbing stairs. Speech and eating are difficult because of low muscle tone in the mouth and tongue. Often people with down syndrome understand so much more than they can communicate. Therapists work with us to give her the extra help she needs to do all those things.

I have watched Bella face incredible challenges. Everything for her in life is harder. We, especially as parents, instinctively want to decrease someone's struggle. We don't want things to be so hard. I can see how someone faces this diagnoses in their child and looks for a way out for their child. But I wish you all could see the joy in my daughters face each time she does something she's been trying for such a long time to do. I wish you could see that the things that are difficult are always the best things. Isn't it interesting that the people who life is "the hardest" for seem to be the ones who also smile the most? It's not coincidence.

I'm not a perfect mom and it isn't easy parenting Bella. She needs extra patience, consistency, and a lot of time, and I come up short on all of those things most days. I would never call it easy... but I always call it a blessing.

"You're here for a reason. If you think you're not, I would just say that perhaps you forgot - a piece of the world that is precious and dear, would surely be missing if you weren't here. If not for your smile and your laugh and your heart, this place we call home would be minus a part. Thank goodness you're here! Thank goodness times two! I just can't imagine a world without you." - Nancy Tillman