World Down Syndrome Day!

Today is World Down Syndrome Day! Momni is so proud to stand with mothers. And today, we are especially proud to stand with our mamas who have children with Down Syndrome. Rebecca Webb is one of these amazing Momni moms!

She recently shared her amazing experience with our Momni team and we are thrilled to share it with you today! She reminds us that life can be hard at times, but there are so many reasons to be happy! A Real Momni’s Experience As I was driving alone to my 20-week ultrasound for my fourth pregnancy, I was feeling sad my husband chose not to come along. “Sure,” I thought, “it’s just a routine appointment, and our babies are always healthy, but I still wish he was with me.” My husband and I had already been blessed with three strong, healthy sons.

We had already found out our fourth baby was also a son, and we had no reason to believe he wouldn’t be healthy too. As the technician was finishing up the necessary measurements, she became quiet and excused herself from the room to speak with the doctor. I felt nervous, and wished even harder that my husband was there. After a time, the technician came back with the doctor and cautiously told me that there was some fluid in and around our baby’s heart, that there may be a serious infection, that our baby may not survive the pregnancy or at the very least need open-heart surgery, and they recommended that I go in for further testing.

The way they spoke felt cold and sterile, and I was left not knowing what to think. A few weeks later and after a series of tests and ending with “the phonecall” that started it all, I was told my son had Down syndrome. I dryly reported the news to my husband at work, who also seemed to struggle to connect with the news. For several hours my mind was swirling with questions.

What? Why me? I told you God I never wanted a child with Down syndrome!! Did I do something wrong?

Am I too old to have children? Aren’t they scary-looking people? What do they even look like? Where did my REAL son go?

What happened to HIM? How do you take care of a child with Down syndrome? Will people like him? Will I like him??

God, could I even LOVE him?? When the full gravity of the news finally hit me the next morning, it was like a bomb shell exploding, and I cried and sobbed in my bed for two full days. I felt as if an alien had somehow traded places with MY SON! I was angry because I thought God knew what was BEST for me!

Clearly, he didn’t. After two days of tantrums, I decided to shower, dress, and face the day. Abortion wasn’t an option. This thing, whatever it was inside me, needed love, so I was determined to face this new adventure with hope.

Maybe it wouldn’t be so bad. Over the next several months I educated myself, and reached out wherever I could to find answers to my questions. Underneath it all, I felt God was telling me that this child was meant for me, and that I would LOVE him, and that it was RIGHT. I felt my fears mostly melt away, and when Jonathan Charles was born, with a miraculously healthy heart, I was IN LOVE!!!

Jonathan Charles We spent time in the NICU, and Jonathan did struggle with feeding and breathing on his own, but he was mostly healthy, and we felt so blessed to have him. Over the coming months and years (he will turn five just a few days before World Down Syndrome Day on March 21 st ), I spent much of my life keeping Jonathan alive. I pumped around the clock for months, thickened his milk and other liquids to nectar-thick consistency, stayed home from church and other public places, and rushed him to hospitals for IVs to treat chronic dehydration and constipation, colds and other illnesses.

We spent so much of our resources to care for Jonathan—money, time, and energy. We paid for childcare (for our other children), medical bills, special equipment, gates & locks (to keep him in the house!), therapists, etc. It took extra time to teach Jonathan to sit, crawl and finally– walk! We pay out of pocket for speech therapists so that Jonathan may one day be able to speak.

At the age of 4, he is just starting to say words, climb stairs and run. And he’s not potty trained yet… But what we have done for Jonathan pales in comparison to the emotional and spiritual care he feely gives us in return. Jonathan has always been a tiny person. My smallest baby, and now, almost 5, even 2T pants are often too long for him.

But I have never felt him small, for his spirit fills any room he is in. His smiles and hugs cross all barriers and melts all hearts. Yes, he cries, he tantrums, he even sometimes hits, but he has mended my broken, aching heart hundreds of times. I feel like he was sent to me to teach me about love, through loving me as Christ loves – unconditionally.

He is like my guardian angel, sent to me in the form of a son, to help me see others more as God sees them. Yes, caring for Jonathan is exhausting at times, but then he’ll climb into my lap, wrap his short chubby arms around my neck and pat my back, and say something I can’t understand. Then he’ll hop off the chair and dance and babble to Pharrell Williams’ “Happy” until I laugh out loud and join the dance party myself.

I’ll pinch myself and wonder how I got so lucky, until he again raids my make-up bag or escapes out the front door and disappears around a corner and I’m brought back into reality. It will be a long and joyous road I’m sure!