These babies are not even here yet, but life with our busy crew is moving so fast, there is hardly any time to process the reality of it all. I am going to be the mother of 6. I am going to be the mother of twins. I am about to publish a book. I am no longer sure what people are congratulating me on. My children’s friends help me to process it. They say things like, “You have two babies in there?” They hold up their hands, and invariably they put four fingers on one hand with the two fingers on the other, and look up. “You’re going to have six kids. That’s a lot.” They’re my reality check. “It is,” I agree.
Earlier this week, we had an ultrasound and learned they are both boys! They are such miracles on the screen, wiggling and kicking and already sucking on their hands. I am in awe every time I see them.
For the record, I still can’t believe it’s twins.
When we found out at 10 weeks that I was having fraternal twins, my response was my standard reaction to most challenges: Read Everything. I ordered 3 books from Amazon,
stalked searched other Instagram accounts of twins which was very helpful. (Yes, I will work out again. Yes, you can nurse them both but get a fridge in your room if it doesn’t work out.) I had just started to dream about the relationship these two babies would have with each other and their other siblings when, at 13 weeks, I got a call. A blood test revealed that one of the twins has a high (75-85%) chance of having Down syndrome.
My very first thought was how it would impact our kids. I had grown up with a special needs sister, who is such a pure spirit, and who taught me about unconditional love and differences in others. I was happy my children would have the opportunity to have love soften their view of people, to see that the world’s view of ‘perfect’ and ‘successful’ is so skewed when it deems someone with special needs or an intellectual disability as ‘less than’.*
But I know our kids’ schedules are demanding and they need our support, even with our limit of 1 sport per season. From having a sister with special needs, I knew how much work and time was required when she had an emergency or an issue. It seemed incredibly daunting to run our life with twins, let alone one who may need extra appointments or medical procedures. As I sat there processing the news, it seemed like a lot. It still seems like a lot.
I thought about my husband, who had just digested the news of a) a pregnancy b) twins. Now it would be another adventure that we couldn’t forsee at all. But his reaction has been simply amazing. I know I will have a lot of stories about this time – they seem to keep sprouting every day like flowers, and I feel like I am holding a bouquet that is so big, I can barely get my arms around it – but the biggest will surely be how the love I have for my husband, and our love for each other, has grown exponentially since we received this news. It is simply amazing to me that while we face what might be considered a really challenging future, we are the most peaceful, the most loving towards each other, the most hopeful we have ever been. We are busy figuring out vehicles and additions and logistics, but somehow in the middle of it all, we are living one of the best love stories I have ever known.
This story is still unfolding, but what has amazed me so far is how all of my fears and worries about schedules and time have been lifted up, and I am so reassured that we will figure it out. We will get through it. We will need help, but it is very clear to me that God is in the middle of this, and will give us what we need. He has been working on our hearts, and while He has set us on this very different and uncertain path, He has not left us alone in facing it. He is right there, heaping peace and love on my heart. I could never have predicted that such an uncertain path could leave us feeling so incredibly joyful.
How is it possible that I am facing what so few would want to face, what I am sure some may even feel pity or sadness over, and I am so filled up with good things? Love, peace, hope, joy. It can only be described as a gift from God.
What we are already experiencing is so tremendous, but I know I am still in the white-hot part of living it. In a way, the story hasn’t even begun yet because we haven’t even met the babies. I truly feel like Down syndrome won’t define them – the one who has it or the one who doesn’t. They will just be our sons. They will just be each other’s brother. And we will just be us. As one wise mom I talked with a few weeks ago said, “Remember that Down syndrome doesn’t define your family.” I love this advice. And just as becoming a mother changes you, the addition of each child changes you. I am still in the process of being changed.
But I wanted to share the start of the story here now, because I know how much it meant to me the day I got that phone call with our test results to see and hear other moms telling the story in its immediacy, as it unfolded. Pregnancy is long – there is not a baby in your arms yet, and there are plenty of fears and worries that can creep in. I am keenly aware of the fact that we have not reached the 24 week mark of viability. And we haven’t told our kids yet. There are still 20 weeks to go, and it seems harder for their little shoulders to carry uncertainty than it is for an adult. When we do, we will tell them the facts: one of the babies has a genetic condition, an extra set of chromosomes. This may result in some health issues, but we do know they will be sweet and funny and super lovable. We will point to people they know who have it – a family friend named David, a friend at gymnastics, the darling girl who sits in front of us at church named Mary whose smile makes me want to hug her every time I see her.
After I received the news, my standard reaction kicked in: Read Everything. I ordered three books about having a child with Down syndrome, pushing aside my books about twins. Even before our news, I have followed Sylvia’s pregnancy, birth and heart surgery of sweet Regina, like many people, on the edge of my seat. She shared with me that the pregnancy was the hardest part, the waiting, but they have had a rough week post-surgery too. We don’t (yet) have a full picture of the heart or if they will need surgery (50% of Down syndrome babies require open heart surgery to repair a hole or other abnormality). We will know more at 20 weeks.
Along with Sylvia there are so many hopeful mommas on Instagram like Kayla Craig and Oakley and Heather Avis who have shined a light on the JOY that their children who have an extra 21st chromosome bring to them and their family. I think of those who get a blood test report or diagnosis that their child has Down syndrome, and hope that they take the time to read these stories, and the books like Bloom and The Lucky Few. Each of these mommas felt the fear, and then felt the waves of love that came after. They have touched me so deeply, and I am so thankful they shared their stories.
I am very aware that the present is precious, and try to live in day-tight compartments. I am trying to be the best mom I can to our beautiful children as they finish up their school year. I am cherishing the time my husband and I have now on date nights or evenings home reading or laughing at TV, before two tiny babies are sleeping in our room and we are sleep deprived. I feel the babies kicking more now, and like most pregnancy mothers, I am aching to feel them in my arms, kiss the top of their sweet-smelling head, and run the back of my finger down their cheek.
Every moment, every day right now just keeps pointing to one simple truth: life is beautiful. Even with uncertainty.
Sometimes, I’ll see the Instagram accounts with twins that I started to follow before I knew one of them would have Down syndrome, and I feel a twinge that the dream as we first envisioned it is gone. The story has changed. But God has a much bigger dream, an amazing love story, and I can’t wait to see it.
* (Side note: I sadly read so many reports of women on message boards and FB groups I have just joined that said their medical personnel recommended abortion multiple times after they received the same results I did, even though in many well-known medical research reports, parents of such children report love, joy, happiness and high quality of life living with them. My hope is that one of the good things to come out of social media will be for voices of doctors and nurses to be balanced with real life accounts. For the record: my genetic counselor was wonderful and offered help and support. My OB nurse had so much pity in her voice, but seemed to come around when she realized we didn’t share her feelings. My OB was great, very matter of fact. But I had been clear we only did the tests to be prepared. Still, every book I have just read of a mom with a child with Down syndrome say that the statistic that 9 out of 10 children with test results that are positive for Down syndrome are aborted deeply affects them. It is perhaps the loudest message about how the world perceives their children.)