“Have you ever had that moment where you realize you finally have everything you ever wanted in life and feel so utterly grateful that you can’t even put it into words? Like your heart is literally going to burst it is so full? I have. And less than a year after I felt that bliss, my life – as I knew it – was completely and utterly dismantled from top to bottom.
Myself and my husband – the love of my life – had been trying to stabilize my personality-disordered teenage son (from a previous marriage) for several months, after plucking him – suicidal and homeless – off the streets. My son struggled with behavior problems his whole life, and I had spent thousands upon thousands of hours to that point trying to get him help. When my father notified me in late June of 2015 that my son’s Facebook profile posts were becoming alarmingly dark, my husband and I sprung into action.
The months that followed our rescue mission were a blur of counseling sessions, court appearances, meetings with school administrators and probation officers, and endless amounts of conflict between myself and my son, me and my husband, and my husband and my son. Our home became a virtual war zone. With two other children in our home (my and my husband’s young daughter, and my teenage daughter from the same previous marriage), it was not an ideal situation. Despite the constant conflict, I had a newfound appreciation for my husband’s steadfast commitment to stick with it.
In early December, after months of endless and futile struggle, we made the impossible decision to remove my son from our home. Even though there were several group homes he could have gone to, my son chose to go back to the streets. As painful and awful as that was for me to live with, I had some peace of mind knowing we had done everything we could to help him. I had come to the painful realization that you can’t help someone who doesn’t want to help themselves. And the instant he was gone, the peace and harmony we had once known in our home was nearly completely restored.
On Christmas Eve, we were elated to discover we were expecting our second (my sixth) child, a conversation about which my husband had initiated right before we brought my son into our home, which was necessarily shelved as a result. We happily announced the news to my extended family at Christmas dinner the next day. We both felt this was a blessing, and saw it as an opportunity to get our lives and our family back on track after the considerable upheaval we had just been through.
In late-February, we discovered our baby-to-be was a girl, and that she had Down syndrome. Understandably, this came as a shock and was met with some sadness and fear on both our parts. And given the prolonged period of conflict and stress we had just endured, both our resources were pretty tapped. We each took our time coming to terms with the news in our own way. I did what I always do when I find myself wrestling with something big… I looked for hope. I spent hours researching the syndrome as well as searching online for stories from families in the Down Syndrome community. I wanted to understand the reality of what our future might hold, both the bad AND the good.
But I started to notice my husband didn’t seem to be coming to terms with it all. He had just… shut down. He wasn’t his usual doting, loving self. In fact, he hardly talked to me at all. I tried to engage him by sharing some of the stories I had found online and when that didn’t work, I gave him some space and trusted he would come to terms with the situation in his own time.
Less than two weeks after we received the news about our baby, while we were still grappling with her diagnosis, my older daughter tried to take her own life. She had also been struggling with some mental health issues, though they were nothing like her brother’s. Hers were more related to mood (i.e. anxiety and depression) than behavior. When her school alerted us about some concerns they had, we followed all of their suggestions – we had her evaluated, got her on anti-depressants and relocated her to a more supportive, inclusive school. She seemed to be doing so much better as a result, so when she swallowed 160 pills that Monday evening in early March, it came as a total shock.
The fires were starting to burn faster than I could put them out. We were still being visited frequently by police officers attempting to serve warrants on my son and being contacted by shelters when he went AWOL (he was still a minor and they had to notify us when this happened – and it happened a lot). And now, on top of trying to come to terms with the news about our unborn baby, my beautiful teenage daughter was fighting for her life… a life she apparently no longer wanted to live.
That first week was terrifying. She was in and out of consciousness, her vital signs were dangerously unstable, she had many seizures, and she hallucinated for days. Once she was medically ‘stable’ and transferred to a psychiatric facility, I decided to clean out her bedroom. As her mental health had disintegrated, so had her attention to cleanliness and hygiene. Her room was a virtual cesspool. As I was clearing away the reminders of her unwell state, I found her suicide note.
I discovered my daughter had been wrestling with her identity – her gender identity, to be specific – for some time, and that this struggle had become too much for her to bear. She didn’t want to live as a female anymore, so for her, the answer was to end her life. For several weeks, while she remained in hospital, we attended numerous counseling sessions, had many discussions, and learned about gender dysphoria, transgenderism, and how to ‘suicide-proof’ our home.
By late April, while we were anticipating my (new) son’s discharge from the hospital, I confronted my husband about his noticeable shut down. I knew he had to be struggling greatly with all the events that had unfolded, but I was struggling too, and I needed him. I missed feeling connected to him. I told him I could sense something was wrong, and that I had felt him ‘unlove’ me when we got our unborn baby girl’s test results. He confessed he didn’t feel the same way about this pregnancy as he had about our first. He told me he didn’t feel attached to our baby, and he didn’t feel like he loved me anymore.
His words shredded my heart into a million pieces and confirmed what I had begun to fear. I was so devastated by what he told me, I didn’t even try to stop him when he left.
The next morning, when I awoke in our empty bed and reality came crashing down around me, I completely shattered. It had been almost a year since I walked out on our back deck and breathed in the gorgeous fragrance of the fruit trees in full bloom, felt the warm sun on my skin, and took a big, deep breath as my heart swelled with gratitude. But now, my (new) son was in the hospital recovering from a suicide attempt that, for all intents and purposes, ended the life of my daughter, my older son was back to living an extremely high risk lifestyle on the streets, my unborn daughter would be born with special needs if she survived the 50% risk of stillbirth I faced with the pregnancy and to top it all off, the love of my life, my partner, best friend, and soul-mate had left me when I needed him most. I couldn’t believe the massive, incredible, sustaining, consuming love he once had for me had evaporated into thin air under the strain of it all.
I was devastated beyond words. Every minute felt like an eternity and was puncutated by an exquisite sort of pain that I cannot describe. I vascelated between trying to repair things with my husband, screaming at and fighting with him, and trying to find reasons not to completely give up. In that process, I nearly lost myself. I cried buckets and buckets of tears. I was unable to work. I spent many days just laying lifeless on the bathroom floor, unable to find the strength or the will to get up. I secretly hoped I would die in childbirth.
I was hopeless and despondent for the rest of the pregnancy. After I gave birth to our daughter alone, the hopelessness and helplessness continued. I didn’t know what to do. I couldn’t stop it. I couldn’t change it. I couldn’t ignore it. I couldn’t erase it. And, at the time, I couldn’t accept it. All of the trauma, tragedy, and devastation were intertwined in such a way that I hadn’t been able to process the events as they had occurred. It was such a massive ball of horror that it felt truly unsurvivable.
But somehow, I knew I had to survive, even if I didn’t fully want to at times. Over time, I was able to grieve the loss of my older son from whom I am totally estranged now. I miss him dearly and think about him often. I wonder what he’s doing… how he is… what the future will hold for him and for our relationship. I want so badly for him to be happy and healthy.
I also grieved the loss of my daughter who died that night and was replaced by a new son. I am so grateful to have him, and loving him is easy. But by no means has this journey been easy. The hopes and dreams I had for my daughter also died that night and I had to greive those losses as well.
And I grieved the loss of a typical, healthy new baby and instead, embraced the innumerable challenges that come with down syndrome. This, too, has been an interesting journey. My daughter is three-and-a-half now, and she is the light of my life. I wouldn’t trade her for the world. But if parenting a child with special needs is challenging and frustrating at times (which it is), it’s even more so when you have to do it alone.
Additionally, I had to grieve the loss of my beautiful, comfortable home, and our former intact family. These were particularly difficult to let go, considering how hard-won they were and how much I valued them. But I’ve come to learn I can make any house a home, and a family can come in many forms. I wouldn’t say being a single mother is my ideal, but it’s the only choice I’ve got.
But my hardest loss of all, the loss of my beloved partner, I am still grieving. The torture that comes from knowing it’s probably best to let go when everything in you wants to hold on… well, it’s indescribable. I’m not sure there will ever be an end to my grief over this loss.
People tell me I’m strong. Stronger than strong. But the truth is, I feel weak most days. I feel broken and battered some days. When the vortex of pain and suffering threatens to pull me in, it takes everything I have to resist it. Some days are easier than others and on those days, I focus on being grateful. And every step I take forward I feel a micro-unit stronger than I was before.
People ask me how I’ve survived all this. I’m not sure I know the answer. I don’t feel I was given a choice, honestly. Though, when I was admitted to hospital and put on suicide watch I guess I truly did have a choice. I chose to survive, I suppose. Even when I felt I couldn’t bear one more minute of the pain, I chose not to give up. And I’m still healing and rebuilding, years later. This process will take a long time… perhaps the rest of my life.
Even if I don’t know precisely how I’ve made it this far, I do know I’ve learned many valuable lessons along the way. I’ve learned to reach out for help when I need it. I’ve learned to be patient. I’ve learned how to accept the unacceptable. I’ve learned that control is an illusion. I’ve learned to cut things down to a perspective I can handle… even if that means just focusing on the next hour. I’ve learned to let go of the things that no longer serve me and hold on to the things that do. I’ve learned to be authentic and humble. I’ve learned what really matters in life. I’ve learned that perfection is an unrealistic standard and that sometimes, good enough is as good as we ought to expect, and that’s okay. I’ve learned how to forgive… others and myself. And I’ve learned that survival is choice… a choice that is made day-to-day, hour-to-hour, and sometimes minute-to-minute.
I know my story isn’t over. It is constantly evolving, just as I am… just as we all are. I don’t know what is yet to come. As they say, we have the good fortune of not knowing what lies ahead, for if we did, we just may be unwilling to take another step forward. But, with everything I have already endured, it is likely that I will survive what ever happens next.”
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