I feel like I have been remiss in my posts lately, because too many people have told me they have made them cry. As Christians, we are supposed to be a joyful people, so hopefully this post will seem more joyful. I will give it the old college try. I really don’t want this blog to become a bummer, because we are even supposed to bear our sufferings joyfully. So mea culpa, I will try and do better. Unless you all were crying happy tears, in which case, carry on!
My OB called me yesterday with the results of the blood test. As I had expected, she told me the test results were positive for Trisomy 21, more commonly known as Down Syndrome. I know this is the part where I am supposed to say I cried and heard the news with a heavy heart, but the truth is, I didn’t. I just didn’t. I was relieved that it wasn’t a terminal diagnosis, and I felt grateful to know this information early so that Scott and I can go ahead and prepare. When I told Scott the news, he took it the same way that I did. Her little heart is what is first and foremost on our minds, and really the DS seems pretty trivial in comparison. There are plenty of resources and support out there for children with DS, and we know plenty of wonderful families with children with DS personally. So, I know this may sound strange to some people, but we really didn’t grieve the test results.
I know that our society values intelligence, health, and success. However, a person could be highly intelligent, in excellent health, and the CEO of a Fortune 500 company and still be a horrible person. My primary goal with my children has always been to pass on the faith to them and that they be good people. And this can be achieved with any child God entrusts to me, no matter her intelligence or health status.
. . . for God sees not as man sees, for man looks at outward appearance, but the Lord looks at the heart.
1 Samuel 16:7
If there is anything sad about Regina, it is that her heart has a serious defect that needs fixing. If you feel the need to tell us that you are sorry, tell us you are sorry about that. Because we are too. We are not sorry that she has DS. She can lead a long and happy life with DS. Otherwise, we are just as joyful about her existence as we were when we first found out we were pregnant. And if her delivery goes well and her heart is looking well enough for us to take her home with us until her open heart surgery, we will be just as joyful at her delivery as we were for the deliveries of her sisters. We love her no less, and we have the advantage of knowing beforehand her health status and preparing for it.
I am grateful for Regina’s older sisters, because I know we can learn so much about how to love her from them. They, you see, are too young to have any of society’s preconceived notions and prejudices about individuals with DS and can love her unreservedly and unabashedly. Even in this trying time for Scott and me, our girls keep us laughing every day. They are such a blessing to us. And I know without a doubt that Regina will enrich our lives and be an enormous blessing to us too, no matter what happens with her health.
Mother Teresa, (who will be canonized on September 4th!!!) said to “love until it hurts.” Because love isn’t just something to make us feel good, it also entails sacrifice. Scott and I are more than willing to roll up our sleeves and sacrifice whatever we must for our girls, ALL of them. And I have asked Mother Teresa to pray for and intercede for our little Regina, because I know she always had a special place in her heart for unborn babies and their parents.
If any of you know of some good resources for parents of children with Trisomy 21, and also good resources for how we can prepare for her open heart surgery, I would be so grateful.
Also, if you are curious about the Catholic take on suffering in relation to kids with special needs, this post from This Ain’t the Lyceum is fantastic. Kelly’s sons have SMA and not DS, but the basic principle still applies, I feel.
Thank you, as always, for all of the love, prayers, and support. This world really does have so many good people in it, y’all. It is so reassuring to have visible reminders of that.