On August 18, 2012, our second child and first daugther, Ariana, was born. On September 12, 2012, we were given the life-altering news of Ariana's diagnosis of Smith-Magenis Syndrome (SMS).
As you can imagine, our family was shocked and terribly saddened by this news. Ari immediately began to have many doctor appointments (pediatrician, GI doctors, geneticist, occupational and physical therapists, etc.). Andrew and I started hyper researching SMS and even reached out to families with SMS kids. We spoke with family and child psychologists to help us better understand what life would be like moving forward. Of course, we had deep concerns about Ari's well-being and how to best provide the right (and ample) resources for the challenges that lie ahead, but we were also severely concerned with Asa's life as a sibling of a severely disabled child (both mentally and medically), who will inevitably require tremendous parental time, money, and attention. The old saying it takes a village to raise a child never had a more poignant meaning. Ariana would surely need a village and then some, but we didn't want that village to overshadow Asa and his needs.
Some background worth noting...Prior to my pregnancy with Ariana, Andrew and I spent years saying that we were "one and done" - that Asa was destined to be an only child. Then came a time when we began to question that decision. Both of us having our own siblings, we thought long and hard about what Asa's life would be like as a "lonely only." Andrew and I went to a therapist for a few months to really dig deep on this topic and make a definitive decision about whether to move forward and have another child. Among our greatest fears was having an unhealthy child, a child who would inevitably, though unknowingly and unintentionally, rob Asa of his current, wonderfully deserved carefree life. Among our greatest hopes, however, was to provide Asa with a fuller, richer life with a sibling he could call his best friend. It took a great deal of time and thought for us to move forward. If you know us well, you know we don't do much of anything without hyper analyzation and attention. I got pregnant - and we were nervous, but also relieved. We were no longer in limbo about what we considered at the time such a massive decision! I was pregnant and we were going to be a family of four and that was that! And we were happy. And then, I miscarried. A miscarriage that brought with it many more doubts and thoughts that maybe indeed we weren't supposed to have more kids. So, Andrew and I planned to get back to living with the beautiful boy we were blessed with after a long year of doing nothing but battling with our thoughts of another... but before we turned around, I was pregnant again.
My pregnancy with Ariana had many trials that didn't come with my pregnancy with Asa. I was told very early on to take supplemental hormones to "maintain the pregnancy" since my hormone levels were low and since I'd recently miscarried. We thought this might not be a good idea - maybe nature should be allowed to take place on its own again? Still, we hoped the doctors knew what they are doing and we went with their recommendations. The hormones indeed allowed me to carry through the first trimester. Then, at 13 weeks, I was given a screen that concluded I was at risk for having a child with Down Syndrome - a 1 in 49 risk. We were incredibly frightened and immediately decided to have an amniocentesis, a risky procedure to be sure, but one that we were told is the only diagnostic test that would definitively detect if the baby had Down Syndrome - or any other chromosomal disorder, so we thought. I felt certain the baby had Down Syndrome because the same screen when I was pregnant with Asa came back 1 in 5,000ish. I just knew the current odds were way too high. Nevertheless, my amnio came back normal, although it did take much longer than it should to get the results. I was told the lengthy process wasn't a big deal, but I kept thinking how odd it was that it took several weeks to come back when it should've only taken a week. But in our optimism and joy, especially since we learned from the amnio that we were having a girl, we moved on from any doubts or negative thoughts. Dreams of pink and purple filled my mind, as well as watching her Dad walk her down the aisle one day. We were relieved and back to being in bliss.
I didn't gain much weight while pregnant and I just knew the baby would be MUCH smaller than Ace. I also had a feeling she'd come pretty early. Well, a mother's intuition is really keen. While I seemingly ignored most of my instincts during this pregnancy (and maybe even some before it), I was very on point with all of them. Ariana was born weighing 6 pounds 5 ounces – that’s over 2 and ½ pounds lighter than Asa – and her height was 17 and ¾ inches – again, over 2 ½ inches shorter. She immediately began having trouble breathing and, subsequently, had problems eating. She stayed in DeKalb Medical’s NICU for 5 days and was transferred to Scottish Rite for another 2+ week stay. As I already mentioned, the outcome of her time in the hospital was her diagnosis of Smith-Magenis Syndrome (which is absolutely what the original 1:49 Down Syndrome screen was picking up on). I only give you all this background because it shows how amazingly evident it is that our little girl wanted to be here - that she is the most meant to be baby on this planet. What she has overcome even prior to her conception, during her time in utero, and following a very traumatic entrance into the world is beyond what most of us endure in a lifetime.
To be sure, though, after hearing the words "Ariana has Smith-Magenis Syndrome," all of my dreams for my daughter died in that very instant. It was the single most defining moment for our family. We immediately became different than everyone we know. It changed us forever. We lost "our normal." We lost our typical daughter. I lost a shopping buddy, a pedicure partner, an assuredly half-dressed, smart-as-a-whip teenage debate/beauty queen. Andrew lost his chance to scare away boys that would come calling and any hope of teaching her to demand respect and chivalry from a partner. We lost the opportunity to buy her a beautiful wedding gown and the chance to see our grandbabies grow up spoiled by their doting grandparents. This one phrase, "Smith-Magenis Syndrome" and its stupid acronym, "SMS," took (and still takes) our breath away. The fact that it exists at all makes us angry. The fact that it exists in Ariana makes us so incredibly sad. I don't think it's possible to feel more loss or more pain - except for the reality that we've continued to feel that heartbreak every waking moment.
It would be silly to be in denial, even though we were told by a couple moms of kids with SMS that many families make it through solely by slipping in and out of denial their whole lives. Without a doubt, Ari certainly exhibits most of the infancy characteristics, which to be honest, in our heightened NICU state of awareness, had us curious even prior to her diagnosis. Furthermore, we had her tested three times to be absolutely definitive that she had SMS. Shock wore off and acceptance moved in and so we tirelessly began thinking of how our family life would be significantly altered forever and tried to figure out how we could possibly create the life that we want for Ari, Ace, and us with this life-changing diagnosis. How can we dream big for Ari – giving her the best of the best treatment, care, supervision, education, undivided attention, a controlled environment to avoid triggers of frustration and unexplained meltdowns, etc.? How can we dream big for Asa – giving him the "typical life" that he so deserves, including the best education, uninterrupted time with Mom and Dad, extracurricular activities, more of an uncontrolled environment to explore his own independence, etc.? How can we ourselves dream big – stay true to our marriage, enjoy time alone, live financially stable, and provide the best for the two children that we brought into this world? And most importantly, how can we do ALL these things together at the same time?... all while not sleeping at night?
To answer these questions and concerns, after our dreams of a typical life with typical children ended, it was determined that we needed to dream a new dream. So, we turned to any and all medical professionals, medical journals, and medically-based research we could find. We've seen a child psychologist, our pediatrician, our geneticist, our own psychologist and general practitioners, and the list goes on, all of whom consistently gave us the harsh and grim news of our situation. We've read countless medical journals and articles (like this one) that all read similarly in regards to the immense challenges of this syndrome - stating that Ari's intellectual abilities won't surpass that of a 6-8 year old, but more importantly her emotional development won't surpass that of a 1-3 year old. Finally, we scoured the internet and read more than a handful of family blogs written by parents (and stepparents) of children with SMS. Each post on each blog brought many tears to my eyes... tears of way more than just sadness - fear, horror, sorrow, anger, rage, etc. It was maddening. But we didn't stop there - we know the internet can hinder as much as it can help in these types of situations, so it was time to make some calls to the folks that live this life every day.
We contacted families with kids with SMS. We hoped they'd bring some light (preferably huge rays of sunlight) to all the tough medical and research based literature we had read and heard from all the doctors. Unfortunately, that was not the case. They essentially confirmed that raising Ari will be an incredibly arduous task - frighteningly, one that may lead to the dilution of our marriage, if not for obvious reasons of immense stress (emotional, financial, mental, etc.), then more simply to share the care-taking responsibilities in two separate homes so that at least one parent (and siblings) can rest half of the time. More than divorce, they warned of sibling depression - that is a real concern for most siblings of children with SMS. Trying desperately to be the "normal one" is a hardship that no child should endure - and for most, it's so difficult that they slip into depression and introversion, hoping to stay out of the limelight that their sibling with SMS demands. It was eye-opening, jaw-dropping, and certainly devastating to hear the words of these mothers, to say the least, but they offered the realities of our situation - realities we could not ignore.
So, after weeks of astonishing research and then conjuring up many hypothetical life paths for our family, we came to a decision that will, once again, change us forever. We decided to place Ariana in another home. We met Jim and Heather through Bethany Christian Services, a non-profit adoption and family service agency. Jim and Heather have been married for 10 years and have suffered their own sense of loss due to unexplained infertility - a loss I've never known and don't pretend to understand, but can only imagine comes with a similar pain in so desperately wishing to bring home a child you are fully capable of providing for. Andrew and I can relate with that pain now. We firmly believe that the best place for Ariana is with parents that will make her the center of their world and they the center of hers. Heather plans to quit her job and caretake for Ariana indefinitely, homeschooling her when the time comes. They do not plan to have any other children, giving Ariana all of their attention, which due to her SMS she will inherently and relentlessly seek. Jim is an optician and Heather is a nurse and they are devout Roman Catholic and will raise Ariana as such. Heather's mother lives near Andrew and I and there is also a Catholic church located close that Jim and Heather have visited while in town. While nothing is set in stone, we are all hopeful to be geographically closer one day in the near future.
Yes, I said we! Andrew and I could never fathom not being a great part of Ariana's life. We gave her life. Our love for her is immeasurable, as is Asa's. It was never an option to place her in a home that closed its doors to us. We were explicit from the beginning that we are indeed a package deal. Jim and Heather would have it no other way - they, too, believe that the very best for Ari will be to have as many people loving, caring, and providing for her as possible. We are so very blessed to have met Jim and Heather - they are not only opening their hearts to Ariana, but to Andrew, Asa, and I, as well. We are all in agreement that we are now forever family. And it is the most beautiful and amazing thing, amidst all the pain and sorrow that also, of course, exists. We are beyond tortured and tormented by the news of Ariana's diagnosis - we are heartbroken in a way I never knew existed. And while the day that we let her go was absolutely my worst day on this earth... emphatically, it was Ariana's best day. Jim and Heather are going to provide for her all (and then some) of what she needs to be the best she can be in this life. I speak with Heather almost daily and we visit often. Andrew and I will be there for Jim and Heather when they need support and respite care, a must for all families who have children with special needs.
Never in our wildest thoughts did we think we'd be in this place - a place where we feel so remarkably ill-equipped to care for both our son and our daughter, the loves of our lives, in one home. To know definitively that we simply can't provide Ari and Asa with all that they will both need individually under one roof is a devastating and humbling feeling. It comes with immense pain, almost unbearable, except that we are bearing the pain and surely will bear it for a lifetime. While it seems unbearable - while it certainly feels unbearable - we're not allowed the luxury of it being unbearable because we're still here, we're still alive, we're still parents to both of our kids. We've no right to succumb to unbearable pain. The decision Andrew and I've made is without a doubt the best we can do for both Ariana and Asa - giving them both the best shot at life. Do we question that decision? Assuredly. But our questioning comes from a place of selfishness. We want her. We want to see her every single day. We want to see her every smile. We want her hear her first words (even if they do come when she is 5 or 6 years old). But these are the easy and surface wants. These are what our hearts can't imagine living without. But Ariana requires (and deserves) so much more than our simple desires for the small, sweet moments. She needs Jim and Heather. And Jim and Heather need her. They are going to take care of each other in a way that removes the "unbearable" from our unbearable pain. And Asa will have our undivided attention and affection. He'll have the life he deserves, which will include his sister, but not be subdued by her. Both of their lives will forever be changed for the best, even if it comes at the cost of our own pain, which is just short of unbearable.
As heart-breaking as it is that Ari won't be with us, there is true love and peace in our hearts knowing she will be where she will receive everything that she needs to thrive in this life that she fought so hard to have. It's now our job to fight with her. Jim, Heather, Andrew, and I are now "The A Team" - in support of both Asa and Ariana having remarkable lives as individuals and staying close siblings.
And so we begin "our new normal" – we know it's a normal that most will not comprehend, but it is to be ours, nonetheless. We have two kids, one that lives with us and one that does not. We will love both equally and give all that we can to each individually and as siblings. Our dream for them will be to have a relationship that they can depend on and appreciate. Our dream for Asa is that he will have a sister who he will know and surely continue to adore, as well as a life that offers the freedoms and joys of a typical childhood. Our dream for Ariana is that she will have a brother who she sees often and squeezes tight with each visit, as well as two sets of parents that are dedicated and determined to offer her the best they can - together as a team. Our dream for Jim and Heather is that they come to know and love all of our extended family as their own. Our dream for ourselves is that we can make it through the tough times so that we will enjoy all of the undoubted awesomeness that is to come with our new life. This new normal won't be easy ~ it won't be pain-free ~ but it will be a way of life that we intend to make beautiful for the sake of us all. We feel in our hearts that we will one day look at this as not just life-altering, but also life-fulfilling.
A picture book about Ariana's Beginning:
