It’s been a crazy 3+ weeks since our Moriah was born. I’ll spare you the details, but early on, nursing her was terribly, terribly difficult for a number of reasons, and I wondered how we’d ever make it through those tortuous, tear-filled trials. I am happy to report that things have been steadily improving, and she is now gaining weight.
I have been working hard getting her to nurse well, as those same muscles exercised in nursing will be used for speech down the road. And improving facial muscle tone for proper speech articulation is especially crucial in babies with Down syndrome. Still, when she is too tired or unable to nurse well, I give her expressed milk in a bottle, which is so much easier for her. All of this takes a fair amount of time, but my milk supply and her feedings are top priority right now, and I am thrilled with the progress we have been making.
As you can imagine, Google has been my best friend since Moriah’s birth. There is so much to learn, and thankfully, there is plenty of information available out there. I feel tremendously blessed and well-networked already. I’ve linked up with other moms who are friends or friends of friends, or even friends of strangers—all who are all farther along on this journey we’re now on—to learn how best to care for our new daughter.
It’s all interesting information to me right now, as I knew virtually nothing about Down syndrome except the genetics of it prior to Moriah’s birth. I learned that Down syndrome is named for John Langdon Down, an English physician. It was he who first noted the distinct set of common features associated with the condition, back in 1866.
Other facts have been heavier on my heart. I learned that in 1929 the average life expectancy of a person with Down syndrome was only nine years. By the 1970s that age increased to 25 years, still far short of full potential. Today, thanks to medical advances and the tremendous power of a LOVING FAMILY, that number is 55+.
All that, of course, is provided that one survives the womb, which is a most dangerous place to be if you happen to have Down syndrome. And that brings me to the most sobering, staggering, sorrowful statistic of all—92% of those prenatally diagnosed with Down syndrome do not survive the womb. May God have mercy on us.
So my mind has been going back and forth pondering two opposite views. The above paragraph, with all its ugly implications vs. everything I read from parents of a child with Down syndrome—parents who have learned that an extra 21st chromosome is not the end of the world, that having a special-needs child has given them unspeakable joy and taught them profound life lessons and molded them into better people because of it.
It’s been a range of emotions for me—shocked and angry at the immensity of the devaluation of life and God’s blessing of children, but also hopeful and encouraged for the future because of medical advances, the efforts of advocacy groups, and the hope-filled, joy-filled testimonies I’ve read from countless parents of children with Down syndrome.
I know our family is on an amazing journey with Moriah, and we’re so thankful to have her with us.