Could We Love Her? — a story of Down syndrome

Crisis pregnancy occurs for a host of different reasons. Difficult pregnancy decisions include those who have been told that their child may face disability and other health complications - the fears and uncertainties can be overwhelming. I met up with one couple who wanted to share their journey with their daughter Evalynn, on this side of the womb.

Images used with permission

Images used with permission

Andrew and Tara Doell live in a small rural community outside of Portage La Prairie, Manitoba with their 7 year old son, Edmund, and their 4 year old daughter, Evalynn.

My husband and I are privileged to know the Doell family. We rejoiced with them when their son, Edmund, was born, and we stood in a hospital room, heard some of their fears and shared in their tears when their daughter was born. Our hearts ached with them for the loss of their hopes and dreams when they were told their baby girl had Down syndrome, but we have also been so encouraged by this family as we watched them grown in love and grace. Today we celebrate the joy and sparkle that is Evalynn!

Tell me about the day that Evalynn was born.

Andrew: It started out pretty normal. We didn’t assume that anything was wrong. When she was born we were happy. They put her on the scale, asked Tara when her due date was, and how many weeks she was. Then they said it didn’t seem right and called for the pediatrician.

Tara: I was excited because I knew I was having a girl. Andrew had his boy, and now I was getting my girl — the perfect family, or whatever people say.

Anyway, she came, and I just remember the nurse picking her up and saying, we need to call the pediatrician. <tears> They never gave her to me or anything. They put her on the scale and what-not. I couldn’t see anything, and I kept asking if there was something wrong.

After the doctor looked her over, he came to the bed and told us he was 99% sure she had Down syndrome. I remember thinking, how am I going to love this baby? How am I going to look at her and find her beautiful? I was pretty upset that they took her away.

Andrew: It was a shock and the uncertainty of what she would be. So that day, we were most definitely feeling pretty crushed because it wasn’t how we thought the day was going to go.

Tara: And we didn’t know anything about Down syndrome or special needs kids. I didn’t know how to interact or anything like that. It was so foreign, and I was scared to be her mom. <tears> I just saw a little girl with no future. That’s really what I saw.

And then what happened?

Tara: And then I met her! <elation and laughter>

I saw her laying in her little cube in the NICU and all my doubt and all my fear of her future, it felt like nonsense. I looked at her, and I fell in love. She was the most beautiful thing I’d ever seen.
— Tara
Evalynn Doell, 9 days old, January 2015

Evalynn Doell, 9 days old, January 2015

How were the next few days as you tried to process?

Andrew: The thoughts changed from - what do we do, to - this is what it is. We had a desire to follow God’s calling for our lives with what He’d given us — to do what He wanted us to do. She was given to us for a reason, and we needed to love her and raise her as a gift from God. We were destined to have her. We had to refocus a bit and let go of what we thought she would be, and we had to leave it in God’s hands whether she would succeed or develop accordingly.

Tara: I didn’t know the reason why God gave her to us, but I accepted that I was her mom. And I knew I could love her.

We prayed that the tests would come back that she didn’t have Down syndrome, and that God could change it somehow, like it could be a miracle. It took a couple days for us to realize that the miracle wasn’t about her not having Down syndrome; the miracle was that she was born and healthy.

I took Edmund’s future for granted because I never thought I had to worry about it. And then when I had Evalynn, her future was so unknown to me that I had to rely on God for hope that she had a future. Even though Andrew was such a good person for me — strong and constantly reassuring — God was my ultimate strength and comfort.

Andrew and Tara Doell with daughter Evalynn in the hospital, January 2015

Andrew and Tara Doell with daughter Evalynn in the hospital, January 2015

what are some of the main differences you see between who you were before and after Evalynn?

Andrew: I didn’t think I was qualified to raise a child with Down syndrome. I didn’t consider myself good with kids in general, but she has definitely given me a deeper appreciation, not only for those with Down syndrome, but for kids with special needs. She has softened my heart. No matter what their condition, they are human beings, just like all of us.

I love her more than I ever thought I could. That would be one of things that I was most worried about - can I love this child? In hindsight, that was one of the easiest things to overcome.
— Andrew
Andrew with daughter Evalynn

Tara: I had such anger and no patience whatsoever. And then I had Evalynn. I still look at kids Evalynn’s age and think, you know, it would be so much easier if Evalynn was potty trained, if she was eating all the food that she could be right now, but I can’t say that she will never get there. I just have to be patient. And that’s definitely what she’s teaching me – patience!

Also, I go out in public now, and I see people with Down syndrome all the time. And then I want to go introduce myself — I just feel that they should know people love them. It breaks my heart to think of them being mistreated or not even given the opportunity to be born — that they aren’t even given a chance. <tears>

AT Doell - 023.jpgDown syndrome Portage, Manitoba Doells 11

She’s changed you – how do you see her also impacting Edmund?

Andrew: For Ed, he definitely watches out for her quite a bit. He has a very strong connection with her. She’s definitely been a blessing to him.

Tara: Even how he interacts with other kids at school who have problems — there is this one girl that was being picked on, and <tears> he stood up for her, and it’s not that we taught him that. It’s like he just knows. I think he sees that everybody is equal. Everybody should be treated the same no matter what.

I don’t know if he fully understands Evalynn’s situation, but he knows that there are certain things his sister can’t do at her age that other kids are doing. But that’s normal to him. I remember speaking with him about Down syndrome, and he’s like, “Well, Evalynn is not Down syndrome, Evalynn is Evalynn Doell,” and I replied, “yes, yes she is.” <chuckles> She is just Evalynn Doell.

“Evalynn is not Down syndrome. Evalynn is Evalynn Doell.”
Evalynn with her brother Edmund Doell, February 2015

Evalynn with her brother Edmund Doell, February 2015

What is your favorite quality about her?

Andrew: <beaming smile> Endless joy is probably the thing I love most about her. She always has a smile, until you get her mad <chuckle>. Then she gives you a pretty good frown, but for the most part she’s always happy. You can always hear her giggling and having fun, as long as her brother’s not getting after her!

Tara: The fact that she can go into any room and make everybody happy. I think that’s my favorite quality of hers. She doesn’t care! “I’m gonna wave at everybody, whether they’re going to wave back or not!”

sister brother down syndrome.jpg
evalynn down syndrome.jpg

What does it do to your hopes and your fears when you see children older than Evalynn — teenagers and adults — With Down Syndrome?

Tara: My fears go away, really. There’s a girl I sometimes see that works at Walmart as a greeter, and she’s the girl I think Evalynn will be like when she grows up! She’s so nice, says hi to everybody, her hair’s always done, she’s always wearing this bright red lipstick, and I just think — that’s Evalynn! My doubts go away because I think she could have a job, she could live on her own, she could graduate, she could go to college…

I know the world will limit her, but her home and her safe place and the people around her who love her will never put those limits on her, and she will do amazing things.
— Tara

I never put any sort of expectation or lack thereof on Edmund, so why would I do that with Evalynn? I won’t ever tell him, “you are not capable of doing these things”, but, “you can grow up to do whatever you want to do”. We breathe the same air; we have the same organs, we are made by the same God. God gave her a heart; God gave her a mind. She’s more than capable of loving, and she’s more than capable of doing what she wants if she puts her mind to it. Just like Edmund.

down syndrome young girl manitoba
down syndrome young girl manitoba

If you were to meet another couple today who had A doctor say to them, “we think your child has Down Syndrome,” what would you want them to know?

Andrew: Whatever you are thinking about your child now, he/she will end up being the most precious thing in the world to you, and you really won’t look differently at them than any of your other children. It’s not hard to love them, and they love you right back. I guess there’s a realignment of what normal kids can do and what she can do, but it just takes a little bit more time. In terms of development, a little more patience is required. But it’s not that they will ever become a burden.

Tara: I would first say that the life of your child is important. They are special and worth having around. It’s going to be okay. And just trust God because He’s in control. The biggest thing for me was feeling alone and thinking that no one else knew what I was going through – not seeking help from people. Go out and find people who are going through the same thing that you are going through. They know how you feel. They know all your doubts and your fears, and it will be a blessing to also share your joys and milestones with them.

As we were nearing the end of the interview, a door slowly opened, revealing a sweet little girl rubbing her groggy eyes after a nap, little hairs sticking out of the loose ponytail on the top of her head, with her love-worn stuffed puppy (Buff), dragging behind her. And we got a big, drowsy smile.

Have you received what seems like an impossible diagnosis in your pregnancy? Does your world feel like it’s falling apart, taking with it all your hopes and dreams? We would love to hear your story and help you sort through all your questions and feelings. Contact us today.