His brain stem is deteriorating, a side effect of the chromosome abnormality he has. Twenty-nine surgeries haven’t been enough to save him, though they have bought him more time with us.
We are told that he’s the only child in the world who has his conglomeration of medical conditions (the chromosome abnormality, spina bifida, a connective tissue disorder, chiari malformation, intracranial hypertension, and another half-dozen minor diagnoses).
The amount of pain medication he receives every day is a drug-addict’s dream, is administered around the clock to keep him from experiencing pain. It is so beyond awful that I don’t have words to express my feelings. Watching him decline is the worst thing I’ve ever experienced in my life and that is saying something.
As if that isn’t enough, the two children my family adopted from Ukraine eighteen months ago have a lot more “going on” than we were told about.
My two-and-a-half-year old has Down syndrome, autism, and reactive attachment disorder. She functions at the level of a ten month old.
My four-and-a-half year old has Down syndrome, a heart defect that wasn’t repaired properly, systemic juvenile idiopathic arthritis, atlanto-axial instability, autism, tethered cord, syringomyelia, mild hearing loss, and is considered both medically complex and medically fragile.
We’ve been told repeatedly by numerous specialists, that she isn’t going to have a long life. She functions at the level of an eight month old.
Neither of the girls walks, talks, signs, eats (they’re g-tube dependent, just like my six-year old) or interacts well with people (they interact, but only on their terms).
When we adopted the girls, we knew they had Down syndrome and that the four-year old had a heart defect.
Everything else has been a big ‘ol surprise since we brought them home. Honestly, it feels like discovering new problems with our kids never ends.
We didn’t know our son had this chromosome abnormality and would die soon. If I’d known this, I wouldn’t have adopted him, or at least not when I did.
To top it all off, my marriage is falling apart. I know I should care, but I don’t have the emotional capacity to handle it. I just want him to leave me alone. I don’t want to have to deal with him on top of everything else.
I’m struggling in every sense of the word. I don’t know anyone that understand how this feels.
Yes, lots of people have a medically-fragile child.
Yes, lots of people have large families.
Yes, lots of people have multiple children with special needs.
But I don’t know any other people who have a large family with lots of kids with special needs, some who are medically fragile, with one who is terminally ill?
If there are, would someone please point me toward those people? I REALLY could use a friend, someone who’ll say, “This totally sucks!” along with me. I know people don’t know what to say to someone like me, but I still want them to say something – the silence is deafening.
His teacher was proactive – she moved his seat to a different group and talked to both the boy and his mother. While I hope it never happens again, I don’t know quite how to manage his feelings and my feelings.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.
It is through our stories that they live forever. These children were here and they mattered. They were loved.
They are loved.
I saw your pajamas last night.
No, they weren’t the exact ones, of course. I returned yours to the store, along with your bassinet and baby blankets.
These were the same though, your pattern. The ones I picked out to match your nursery. Bright teal, with lime green, hot pink, and bright purple flowers. And panda bears. Lots of pandas.
Is it wrong of me then, that I do crave to hold another baby in my arms?
I’ve given myself time, and I continue to mourn you. But I still have so much love to give. And Ian wants a baby. I want to give him this gift, to share this part of our future together. A part of me still feels I’m forsaking you to do so.
So tell me, my sweet Bella, what am I to do?
How long am I to go on missing the sound of your heartbeat, the feel of your somersaults?
How long before it’s “acceptable” for me to want another child?
We were married for 17 years, 6 months, and 2 days.
Up until day 6,217, when he told me he wanted a divorce, I thought we were the happiest married couple ever. I said those exact words to my best friend when she tearfully called me to tell me she was considering leaving her husband. I told her that she deserved to be happy.
So, when my dear husband told me the same thing shortly after, I knew he didn’t deserve anything less.
Up until the last day of our marriage (day number 6,394), I thought the divorce wouldn’t actually happen. I couldn’t process the concept that WE – my husband and I – were not going to be married.
. I do that sometimes when I have trouble recollecting events – I pare the story down to basic facts and repeat it until it sinks in. In this case, it made me realize what a shocking and kind of hilarious story it is.
This version is a little more than the nutshell – context is important – but it’s still hard to believe. Plus, some parts were left out for too long and it’s important that I’m honest about them.
So, right – back story.
I met him on my first day of junior college and we became inseparable. A year and half later, he enlisted in the Army while I was moving to continue my education. I couldn’t stand to be apart from him, so I broke up with him.
Kids are stupid.
He showed up out of the blue, all crazy and romantic, two weeks later. I agreed to get back together with him. Two weeks later, we got engaged over the phone. We planned a wedding for eight months later – that April.
Happy, happy day! Huge family event. It stayed a huge family event for more than 17 years. We had three kids, one failed business, somewhere around a dozen moves – including one cross-country and back.
This is where I leave out one part.
Well, where I used to leave out one part. After child number three, our beloved baby girl, things went south.
Meaning, The South wouldn’t rise again. He started having trouble getting it up.
Then, it didn’t come up at all.
I thought we were strong. We were best friends. I really thought we’d be together forever. I even had his name tattooed on my ankle in a big flaming heart. (It’s covered up now. No worries.)
If we talked about our intimacy issues, he just told me I didn’t do something enough. I didn’t initiate enough. I wasn’t there for HIM enough. I wasn’t enough. We tried Viagra; it didn’t work. We had sex a total of four times during the last seven years of our marriage. I gave up.
I’ll skip ahead to tell you how this turned out.
Between leaving me and marrying her, he visited a doctor. For her.
It turns out that years of untreated diabetes shredded certain blood vessels. He had liquid Viagra injected into his penis (OUCH!) and it still didn’t work. He’ll never have another erection without surgery. I have no idea if he got it or if he intends to.
But bottom line there is, it wasn’t – and never was – my fault. I never told ANYONE about his situation downstairs until I had to.
That brings us to Year 16; two months shy of our 17th anniversary.
In February, he found his high school girlfriend on Facebook. She requested him as a friend. He was perplexed and flustered; he asked me a million questions.
Should he add her?
Was she still mad at him for breaking up with her?
Could they be friends?
I was calm. “Honey,” I said. “Oh honey. We’ve been married almost 17 years. We have three kids. We live two states away. She’s married. It’ll be fine. Be friends.”
See how funny this story is already?
The emails, texts, and phone calls started immediately. At one point, I asked him to stop texting her. Emails were fine, stay friends on Facebook – just don’t text.
But I wasn’t built to be the text police.
So, you want to text? Fine. I trust you.
April was our 17th anniversary. We talked about having more anniversaries, staying married. I pushed for a quick answer; he said he wanted to stay together.
In May, there came a day he couldn’t stop pacing. Over and over I asked what was wrong. He couldn’t give me a clear answer.
I kept at it until he said the words, “I want a divorce.”
We both cried.
He moved out of the bedroom to the couch downstairs.
I cried. I howled. I screamed. At one particularly low moment, I was on my knees, sobbing, before him on the floor, while that stupid Sugarland song, “Stay,” was on the television.
He told me to stop; Just get up.
He didn’t want to talk. He didn’t want counseling. He was just done. Wanted his Facebook girlfriend.
At that point, he said she was still married; they were just friends. She “helped” him through this rough time.
In June, he took trips to meet her, the first in the city where we had our honeymoon because it was “more convenient.”
In July, I saw he’d been tagged in photos from a high school friend. We were still friends on Facebook. (I told you this story was funny.)
These photos were for his birthday party, to which I wasn’t invited, but there they were, arms around each other. Someone commented what a cute couple they were.
About that time, SURPRISE, I started dating. I’ll admit, I wasn’t just dating; I was down to fuck. After only having sex four times in seven years, I wanted some.
And I got some.
Never anywhere near my house – no one came over. He was still sleeping downstairs on the couch. He moved out in August.
At one point before our divorce, after he followed me to a park and took pictures of me partially naked and in an obviously sexual embrace with another man, he said, “You’ve got your get out of jail free card.”
At the time, I didn’t feel like our marriage had been a jail.
Of course, now I see that it was – we were both unhappy for a long time. Now, I’m thankful he gave me the card. When his business failed, we had to start over again and I didn’t see him the same way.
I lost respect for him, loving him a little less each day thereafter. I’m sure it wasn’t easy for him.
Our divorce was final in October.
At Thanksgiving, which our divorce decree states is always his holiday with the children, he took his girlfriend, her kid and our kids to his family’s holiday feast and announced their engagement.
They got married in January on the beach with our children in attendance. I made arrangements for him to take them out of state for the event. I bought clothes for them to wear. I spent hours convincing our eldest, then 16, to go with them. I thought I was helping our kids through the transition by accepting the situation and being positive about their relationship.
They’re still together. I don’t say negative things about them, not around the kids. Of course, I hate them.
If I could explode people with my brain, they’d be first on the list. Clearly.
Sometimes I look around this house we shared – our last home together – and it’s hard for me to think that he’s not here, that he’ll never set foot in this house again. That loss has left a scar on my heart. A sensitive one.
I’m still shocked. I don’t know that I’ll ever get completely over it. I’m taking a break from it right now, but I have happily dated A LOT.
Four guys I’ve dated have left me for their high school girlfriends. I started asking men if they were still in touch with their high school squeezes because if they were, they’d soon find those bitches irresistible.
I laugh about it – to hide my pain.
I’m broken, yeah. I’m working on doing better, on being better.
It’s been a long time since you’ve asked me to comment on the book you wrote about your mom’s suicide. I think you are amazing to write about it and I’m glad that you did. I don’t enjoy bringing that chapter of life to mind, given the chaos of those years, but I’ve thought about it often. Especially when I think about what it means to be a mother and uncovering fresh layers of fucked up that we both learned from our mothers.
I know it’s not fair of me to judge them now — but it’s hard not to.
Talking about my relationship with your mom is hard for me because I admired her very much — I was flabbergasted by the way that she slipped back into drugs and addiction.
I was shocked that she abandoned you like that. I was just shocked.
I couldn’t believe your mom would die by suicide.
I still can’t.
I remember the first time I met your mom, I was playing in the front yard while she moved in across the street. She introduced herself from over the fence and told me that she had a daughter just my age, with my name: “I have a Sarah too.”
By the time you came to visit for the summer she had already arranged that we would be playmates. She even arranged a phone call between us before your visit.
When you showed up at my front door, I knew we would be lifelong friends.
My mom worked a lot and my dad was physically or mentally absent most of the time, so your home was like a second home to me.
During these years, your house felt like a Norman Rockwell to me, though now I see that it was far from it.
My mom remarried a man who was addicted to heroin, while at your house, your mom packed lunches, set up the tent in the backyard for us to “camp,” and made goody bags filled with candy. She took us to the zoo, the mall, and the flea market. She prescreened movies, took us for mint chocolate chip ice cream cones, and insisted that you wore a bike helmet. I remember going with her to an NA picnic in the park and how proud she was of her sober chips. We’d to admire the shiny metal coins she earned for racking up months and years of sobriety.
I envied the amount of time and attention that your mom spent with you when she was sober As a kid, I saw your mom as kind, fair, the type who would take the time to listen.
It was very late and your mom answered the phone and insisted that I tell her what was happening. My stepfather hadn’t started hitting my mom yet, but the yelling was really over the top. She gave me a speech about how adults sometimes argue and it can be scary for children to hear and explained that my mom and step dad would never want to do anything to scare me. She told me to go downstairs and tell them that they were scaring me and I couldn’t sleep. They told me to go back up to my room.
Many nights of fighting followed with growing intensity and I tried to call you but ended up talking to Beth.
Beth eventually called my mom and told her that she was concerned about me – I was in big trouble. I was forbidden to speak about “private family business.” It worked: I didn’t speak of the violence again until after his death.
The violence escalated and my stepfather began beating my mom and my brother when he was angry. We moved on several occasions to get away from him.
The emotional abuse from my stepfather became our new normal and we began spending school nights on random people’s sofas, hiding our car down the street.
I spent as much time as possible at friend’s houses and took up babysitting to get out of the house on weekends.
Beth was the only person who knew what was happening; I’d assumed that she would be the person to help me out of that situation. I’m no longer sure she understood how bad things had gotten. She provided me a safe place to go whenever I needed one and a reminder that there are kind people in the world. She told me that I should become one of them. She affirmed that there were a lot of fucked-up things in the world and they would probably never make sense.
Honestly, I don’t know how I would have turned out without Beth as a moral reference point during those years.
Beth became addicted to codeine cough syrup and her behavior changed: she didn’t take us on outings she slept all day everyday. One occasion when she woke up, I remember her running down the hallway singing “boo boop be boo.” This is when I learned that there was something wrong. I was pretty sure that people with bronchitis didn’t do that kind of thing normally.
I knew things were coming unhinged for you, but was too young to appreciate the full weight of what was happening.
I lived in Beth’s house twice, once for a short time when I ran away after my stepfather died and for the school term after that.
By the time I officially lived with Beth she was pretty far gone in her addiction. She slept or was gone most of the time.
It seemed that you were on your own, too.
I still cared what Beth thought of me. She seemed one of the few people who didn’t see me as a lost cause and so I didn’t see myself that way when I was around her.
On Fridays, Beth would take us to the grocery store. She taught us how to grocery shop and some very basic cooking skills.
Things went sour when my mom suspected Beth was using the money she gave her for things other than my upkeep. You and Beth were at odds more often than not. I decided it was best to move back home. Home was a sort of hell, but it was my own hell and I knew how to navigate it.
I didn’t see much of Beth after that.
I’d spend weekends at her apartment while she agreed to leave us totally unattended. The last time I saw her, she’d picked me up from my house to bring me back to your house for the weekend. I remember her being warm and chatting with me for the ride, though I can’t remember what about.
I remember her smiling and I remember that she mentioned that you were unhappy with her these days.
The next time I saw her she was in a coma.
Atrophied hands, hair cut short, dead to the world.
No warm smile, no more sun-kissed freckles, no more frizzy bun atop her head.
She was gone to the world and she couldn’t recover. That’s the last I saw her.
I couldn’t talk about her death with you. It didn’t seem like you wanted to and then you were gone I knew that she let you down and ultimately abandoned you with her suicide. You have every right to be angry with her; hell I was angry on your behalf.
I was just shocked and sad. I think I felt abandoned too.
The next few years were hard for us; the one person I saw as a safe adult had succumbed to drugs and took her own life. It didn’t add up.
Suicide was cruel and yet I remembered her as such a kind person.
There was nothing I could say that would lessen the pain for you so I said nothing.
You remind me of her because you look so much like her now. If you want to talk about what happened, I’d let you start.
What is there to say now, after all of these years?
That was fucked up. There is some fucked up bad shit in the world and it will never make sense, but there is some wonderful stuff too. I think that, despite it all, we both turned out to be people who contribute more to the good than to the uglyl.
I hold you close in my heart, my sister and my dear friend.