"I've been lucky ___ times..."
Did you know many cultures believe the number seven is a lucky number? There are seven wonders of the world, seven days of the week, seven colors in a rainbow, seven continents, the seventh day is a day of rest, and there are even certain ancient beliefs that claim the seventh son of the seventh son was gifted magical powers, or something like that....
***
Growing up, I always wanted 5 kids. I thought that maybe they'd all be boys. Mila, of course, changed those plans (for the better!). Christmas after Mila was born had me pining for cute family stockings. Though premature (our family was far from complete) I was sure we wouldn't go over our magical number of five (if we even make it to that many, I thought), so I bought seven. I adored adding one more stocking to the fireplace every couple of years. The second we brought Aden, our fifth baby, home from the hospital, I just knew there was one more. Jack rounded us out at six, a perfect even number (thanks to eBay he also has a matching stocking), and we finally felt complete with our family of 8. I gave all maternity and baby items away, continued donating each size Jack grew out of, and we felt confident, after a decade of growing our family, to move on from the baby stages... until we didn't.
We were surprised for sure when our lucky little number seven let us know he was waiting to come down. In fact, the way it all played out was just as miraculous as he is, and Andy suggested looking at baby names with meanings of "God is gracious" or "sent from God" in those first few weeks after our positive pregnancy test because we were sure he had to be a strong and special spirit with a distinct life purpose to have squeezed his way in when we thought we were done. We found a name we loved and wrote it down. With my first six pregnancies I didn't feel movement until the second trimester; with this baby, however, I felt several quickening movements in those first 12 weeks, confirming my thoughts that this baby was certainly strong and special.
on January 3, 2022 we found out just how special he was.
***
After our oldest, Mason, surprised us at birth with a giant congenital melanocytic nevus, each delivery had me holding my breath for surprises not seen on ultrasounds. Our next 5 births brought equal amounts of joy and relief. Though I was admittedly a little nervous every time we decided to have another baby (should we press our luck after this many healthy and beautiful kids? I have already been lucky ___ times...), we put faith over fear and Andy and I were blessed, despite one miscarriage, to continue our pattern of a new baby just under every two years.
I'm not sure if it was because of Mason's birth diagnosis, or if we were being prepared ahead of time, but I always had a feeling that I'd be placed in a situation where I'd need to make the choice to see beauty in an unfamiliar situation. I'd even go so far as to entertain thoughts of me turning to Andy in a hospital bed and smiling while I'd say, "He sent us a perfect one". I'd always quickly dismiss these thoughts and never voice my concerns out loud because I didn't want to put it out there, accepting it as a true possibility.
Partly because I sensed a possibility of us having a child with different needs, but mostly because I'm an impatient planner who really wanted to know the gender as soon as possible, we opted for the NIPT panorama blood test for our last three pregnancies. The first two ended the same, a sealed letter we excitedly opened to see the word "male" along with low risk numbers before celebrations were in order. Our third test, however, didn't end in a letter at all.
We were at the park for Emma's birthday when I missed a call from an unknown number because I was on the phone with my Mom who was FaceTiming the birthday girl. Quite a few trips down the slide later, I heaved the stroller into Sarge, our new 15 passenger van, and smiled over the fact that this baby had already caused some significant changes. No longer would we be moving back to Utah in June as planned, and no longer could our family of soon-to-be 9 fit in our beloved B1RL excursion.
The kids were content watching Duck Tales on the portable DVD player we jimmy-rigged to the back of the driver's seat, so I took a minute to check my voicemail left from the unknown number earlier. From the second I recognized his voice, I knew my doctor calling me himself was not a great sign. He simply said he had some test results to go over and asked if I would call him back. My heart raced.
After Jack was born, I developed postpartum preeclampsia. Although I was reassured by my doctor that PP wasn't a a problem at all in getting pregnant again (just one baby aspirin a day), I had some less than ideal health annoyances that seemed to stem from this diagnosis, and considered them another reason to be done having kids. I had an MRI and other appointments scheduled when I found out I was pregnant, and even though I went ahead with the MRI without contrast (per my doc's orders, results came back completely fine), I still had a lot of guilt getting pregnant again knowing I hadn't ironed out some health questions, the minor concerns that they were.
I called Andy the second I finished the voicemail and told him I thought my doctor had found something wrong with me in my blood work. He told me not to worry, and to come home so we could call him together.
Back home in Andy's office, we called the nurse who told us my doctor was behind schedule and wouldn't have time to call until the end of the day. She said that he'd probably just see me at my prescheduled appointment the next day. I can't wait that long! Sulking there on the floor, wishing I could go read the test results myself, a thought came to me for the first time since I listened to my doctor's voicemail and I said, "Andy, what if something is wrong with the baby?" I took his advice to try not to worry until we knew for sure, and brushed the thought off almost as quickly as it came.
A few hours later, Andy and Emma went on a date ice skating. As luck would have it, my friend asked for the other kids to come over to play. It was a rare, quiet night, and I had just put Jack to bed when my phone rang. My doctor didn't waste any time as he unceremoniously stated, "I have the results from your blood work and it looks like you are having a boy (the 5 boys I thought I'd have after all!)... and, as you know, the main reason we give this test is to screen for potential abnormalities. I wanted you to know that your results came back positive for Down syndrome......." he went on with statistics, additional testing, and encouragement.
I thanked him for going out of his way to make sure I felt supported (he was so kind, I truly think he was placed in our lives for a reason, but more on that later...). I declined further testing due to risks I wasn't willing to take (which he informed me didn't really matter anyway because this test in the second trimester was over 99% accurate), and I think I remember answering his "do you have any questions?" with an overly positive voice saying, "No, I don't think so, we'll take that and run with it for now"... or something really dumb like that based off the way he sounded when he told me how special these kids are and that if I needed anything to let him know.
I was unable to carry on a halfway rational conversation with him because, while completely devastated on the inside, I was unwilling to let him to catch wind of my disappointment and heartache if it was the last thing I did. I needed to make sure he knew that although he changed my life with that phone call, my baby boy would be fiercely loved and protected no matter what, and a stoic, positive (albeit forced), mama bear, giving only a few (mostly incoherent, I'm sure) short replies, felt like the right way to endure the rest of the phone call which ended soon thereafter.
***
I'd love to be able to tell you that I was at peace in this moment. I'd love to tell you that (much like my earlier day-dreaming-self) I told Andy with a smile, "He gave us a perfect one", and that I accepted and welcomed this complete change to our future with arms wide open. I would like to tell you these things because of what I know now (I was completely uneducated on Down syndrome, never having had the opportunity of getting to know one of these beautiful children, and assumed the absolute worst); but I wasn't at peace, not right away.
I have dealt with guilt surrounding those first few raw and emotional days, especially when it seemed everyone was more excited about this diagnosis than I was. The only way I can begin to explain what I was feeling, is that I was grieving the loss of the baby I thought I'd have. The brother I thought I'd be giving my kids. The future, hopes, and dreams I spent the prior 15 weeks imagining for my son.
There is a poem entitled 'Welcome to Holland' that I found that night, and it beautifully describes the loss of the life you were planning for as it compares having an unexpected diagnosis with planning a meticulous trip to Italy, only you land in Holland. Holland is beautiful and wonderful and you have a good time there, but it wasn't the Italian trip you had carefully planned. The closing sentiment in that poem is this:
"But everyone you know is busy coming and going from Italy... and they're bragging about the wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That is what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very significant loss. But... if you spend your life mourning the fact that you didn't get to go to Italy, you may never enjoy the very special, the very lovely things... about Holland."
***
I hung up in a daze and somehow made it to my room where I fell onto my ottoman and entered into a gut-wrenching, pleading, questioning, and 'what did I do wrong', cry it out loud kind of prayer. I'll never forget those few sacred moments by myself, the only one on this side of the veil (besides my doctor) who knew. I know I was surrounded by so many angels; loving me, sustaining me.
I felt overwhelmed and scared, but even more, I felt insane guilt. Guilt that I may have done something wrong (was it my vitamins? Sitting in the hot tub all those times? The wellness formula pills I pounded in Boston when I felt I was coming down with a cold?), guilt that maybe I wasn't healthy enough to support a seventh baby (was it the preeclampsia? Am I really that old? Have I had too many babies?). I felt selfish for wanting this seventh baby so badly when I had been given six perfect babies already. Most importantly, I felt guilty for all the above thoughts and feelings I first experienced, despite our unknown future.
I called Andy. I couldn't carry this alone for long and didn't know if I could wait for him to get home. I worried about how he'd feel, especially after knowing how I felt. I still felt selfish for wanting to add to our family again after having been blessed with a beautiful and already large family; now I had additional guilt because of this added stress.
When he answered, I told him we were, in fact, having a boy, and that he had Down syndrome. If only I could have recorded that call. If only everyone could have heard his excitement when he replied, "Our ticket to heaven! Oh we are so lucky. You know, I've always known I would be able to take care of someone like my Dad took care of his brother, I've known it from the time I was young." (Andy's uncle Steven was born with a nuchal cord injury which caused serious intellectual disabilities) and he went on. Only for a few minutes, because I did interrupt his date with the cutest (newly 5 year old) little lady.
I hung up and, for the first time that night, felt complete peace. Not that the overwhelm, sadness, and anxiety over the future completely disappeared after that call, but my best friend was more than willing to take on this adventure together, he'd been prepared as I had, and we'd be more than able to do this. Bring it on, I challenged.
***
It is currently St. Patrick's Day, March 17, 2022 (though this may be published later). I have known we would be bringing an extra special baby with an extra chromosome into this world now for just over two months. The same night we learned of his diagnosis, I ordered books on Down syndrome, followed beautiful Instagram families blessed by Down syndrome, and joined several Down syndrome community Facebook groups. We've been recipients of children's books, key chains, onesies, and most importantly love. So much love. From so many people. Prayers and calls and texts and fasting. This baby has one heck of a support system with so many people who love him to death, especially because of his diagnosis.
I was pleasantly surprised how inclusive and supportive the Ds community is and how we became part of another family in just one night. I have learned proper person-first speech, important celebration days and fundraisers, potential health concerns and precautions, how to give him the best start to life, and I am learning how to be an advocate. Most importantly, I found I had nothing to be afraid of.
I wish so badly that my eyes were opened before my diagnosis to the beautiful world of Down syndrome. I wish I could have known how our life will only be enhanced, despite the possible hills we'll get to climb (which is parenthood anyway!). I wish I would have known the potentials and possibilities, because once I knew, concern gave way to determination. I would have known how he will most likely be able to talk, walk, run, read, play, swim, become independent, hold a job, and maybe even get married (though selfishly I want him all to myself forever). Only two months in, I know there is so much more we will get to learn and love about the new path our family is on.
I opened Instagram early St. Patrick's Day morning to the sweetest video of a little girl with Down syndrome, whose Mama compiled a reel of her beautiful moments to the soundtrack of 'La Vie En Rose' with a voiceover comparing the extra chromosome of Down syndrome to the serendipitous way some clovers have an extra leaf and how lucky we are to be blessed with these beautiful babies with extra chromosomes. The poem reads as follows:
Who knows why Down syndrome occurs? Why does the extra 21st chromosome stick to the cell when the fertilized egg begins its first cell division?
It can be compared to what happens in nature, to a field of clover. Usually, we see three leaves on each clover. Once in awhile, however, we find a clover that has an extra leaf, making it a four-leaf clover. We don't know why God decided to add that extra leaf... he just did.
There is no obvious explanation for it. All of the clover plants grew in the same soil. All were exposed to the same sun and rain. God just decided to add an extra leaf to a few clovers in the huge clover patch. This doesn't make them any better or worse than the other clovers... it just makes them different. And it is widely believed that four-leaf clovers bring good luck...
It is much the same way with an extra chromosome. We don't know why God didn't let the cell divide evenly, but he didn't. He decided to add another chromosome to that baby's cells. It doesn't make that baby better or worse than the other babies... it just makes him or her different.
And, if you find yourself the mom or dad one of those four-leaf clovers... one of those extra-special babies... then you are truly lucky. For they are the most special babies who grow into the most special people. And... you are truly... the luckiest.- Anonymous
My Aunt Marilyn has often corrected me when I have said how lucky I was for something by saying, "you mean blessed". I wouldn't have called myself lucky or blessed listening to my doctor that dark night on January 3rd, but I can see glimpses of it now. And maybe, just maybe, seven truly is the luckiest number. We're gradually learning that we are seven times blessed, and on this St. Patrick's Day night, we definitely feel seven times lucky.
