This is her story.
My world is falling apart.
My just-turned-six year old is dying.
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 lost a child to death.
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.
This road I’m on is lonely.
I just want to feel like I’m not on it all by myself.
Fourteen and a half years ago, our lives changed forever.
We had already suspected that something was not quite right with Anna. She had stopped nursing after a few days. I assumed that it was my fault, and since I was afraid that she was hungry, switched to formula and bottle feeding. She did well with that for a few days, but then it seemed like a challenge just to get her to drink an ounce. We called the nurses on the maternity floor where she was born and were reassured that she probably just had gas and an upset stomach because of the switch and not to worry.
I was still worried, but we had our first postnatal pediatrician appointment the next day (July 25), so I knew we would get answers then.
In the meantime, I received a phone call from someone from the state of Michigan. I’m not sure – my memories of that are vague. I remember that she told me that Anna had potentially tested positive for one of the disorders in the newborn screening test, and we should go to the hospital to get blood drawn to confirm it.
I was concerned, but still focused on our doctor’s visit.
When we went to see Dr. Simms, her pediatrician at the time, as soon as we were called back to the exam room, she greeted me, looked Anna over, then excused herself to get one of the other doctors.
I guess she wasn’t sure how I would react to what she would tell me next.
When they returned, she explained that Anna had tested positive for maple syrup urine disease (MSUD), it was very serious, and she was very sick. T
he only specialist in the state who saw patients was located at University of Michigan: we were expected down there and we needed to leave as soon as possible. I remember that her southern accent was soothing and the other doctor gently held my shoulders and guided me to a chair, but my mind was in a fog. I didn’t understand… Anna was born healthy. Both of her Apgar scores were 9. That meant we were supposed to live happily ever after.
At the time, Lance was working at Hafer Hardware, and it was lunch time. Dr. Simms allowed me to use the phone in her office to call him. I called the store, but he had just left for lunch. And of course, this was before we had cell phones. I’m sure it was only a few minutes before he finally called back, but it seemed like an eternity.
After reaching him, Anna and I headed home to pack before we headed to Ann Arbor.
On the drive to U of M I poured over my “What to Expect” book. MSUD wasn’t in there. I had heard of it, but only as an ailment of a serial killer in a crime novel I had read, not as a real disease.
When we got to the ER at U of M, Dr. Allen, a neurologist who treated patients with MSUD, and a gaggle of med students crowded into the small room. I remember that he removed Anna’s diaper and passed it around for the students to smell. He then took a swab of her earwax for them to smell. We were completely flabbergasted… what did he think he was doing?
We didn’t realize he was doing it to show the students that both smelled like they had been smothered in Aunt Jemima’s.
You see, there were signs that Anna had MSUD, but we never picked up on them.
She had a very high-pitched, shrill cry, but we joked that she’d sing opera someday. By the time she was 3 days old, she tensed her muscles so tightly she rolled herself over. We bragged that we had a wonder baby who was months ahead developmentally. Her diaper smelled sweet and syrupy.
We chalked it up to being new parents, and being so in love we thought her dirty diapers smelled good.And what we thought was fussiness with the bottle and me not being confident in nursing was actually because her brain had swelled so much that she lost the suck and swallow reflex.
By the time we were in PICU, she had an IV in her scalp because she was so dehydrated that it was the only blood vessel they could use. She had an NG tube giving her nutrition. She was hooked up to heart monitors and pulse-ox monitors. She looked so tiny and helpless there in the bed. We’d never felt so helpless as parents as we did then.
That day is one of the few times I’ve seen my husband break down and sob.
What information we were given about MSUD over the past few days was overwhelming. Most of the official definitions included two very frightening likely outcomes: mental retardation and death.
The prospect of having a child with a restricted low-protein diet was daunting as well. Would we need to become vegetarians, too? If we wanted to eat meat, would we need to hide it from her, making late night drive-thru runs to satisfy our cravings? Those fears seem so trivial now, but they were so real to us then.
Over the next two weeks, Anna got stronger.
After she got out of the PICU, she was moved to a regular room. After she regained some weight and was able to take feedings by bottle, we were able to come home.
She was sent home with the NG tube, as she was still taking about a quarter of her formula that way. Shortly after we got home from the hospital, she grabbed the NG tube and pulled it out, flinging stomach acid all over me. I should have known then that it would serve as foreshadowing for how the next thirteen years would go!
Thankfully, we were able to remove the tube after a week.
As I think back to those days, I also look ahead to what faces us.
When it comes time for her liver transplant, I know that we will face long days in the hospital full of tears, hope, fear, and prayers. The big difference will be that this time, we will be filled with hope.
Hope that although we will be entering a new chapter full of uncertainty, we will be free of the fear that MSUD has caused over the past 14 years.
His name is John; hers is Yvonne. He is 76 and she is 74. They dated all through high school. Then they broke up and married other people, had kids and grandkids, and all was well.
Then John’s wife got cancer – ovarian or cervical – either way, doesn’t matter. He took care of her, always believing he could do more. Then she died.
John got on with his life. He was sad, but dealing.
One day, John’s son looked up Yvonne and found out she lived only 30 minutes away. She was married to someone and had kids and grandkids and even a great-grandkid.
Some time later, John’s son showed him the obituaries. Yvonne’s husband had passed. Cancer. John went to pay his respects. After all, he and Yvonne had once dated. They talked a bit and promised to keep in touch.
John and Yvonne were married two years later.
They have been married about six years now.
Two years ago, Yvonne was diagnosed with cancer, cervical or ovarian – doesn’t matter. It was the same cancer that killed John’s first wife.
John said NO!
He wanted to fight the cancer. He wouldn’t let cancer take his wife again.
John goes to every doctor appointment. He keeps track of every medication and dosage and when and how she is supposed to take it. He sat with her while she went through chemo. He shaved her head – and his – when she started to lose her hair. He isn’t letting her go without a fight.
They don’t know what the future holds, or if the cancer has spread.
Cancer sucks…but it also made them stronger.
Cancer brought them together.
I don’t know if I’ll ever have babies.
Let me tell you what I do know:
I know that I’ll never birth a baby.
I know that my husband doesn’t create sperm.
I know that he’s ashamed of it and that makes me ashamed of him. He should advocate for all men out there who suffer silently through infertility, but he won’t, and I won’t “should” on him.
I know that I’ll NEVER do another round of infertility treatments because they make me crazy and hurt like hell.
I’m a wreck while on the drugs and a wreck when they don’t work.
I know I had at least one egg welcome donor sperm into her secret chamber and try to dig into my lining and hold on.
I know that the drugs made my lining extra thin so that her little grippers might as well have been coated in oil.
I know that the first pregnancy test came back MAYBE, as did the second.
I know that the day I went in for the REAL TEST, I started to bleed.
I know that people expect me to move on.
I know that the only way I will get a child is if I adopt.
I know my husband is worried about adoption.
I know we can’t afford adoption.
I know that I will find a way to do it.
I know that there are days that infertility defines me, and I can’t help but wonder if it is because God is punishing me.
I would give anything to have a child and can’t stand to be around people who suck as parents. Yeah – I’m judgmental of your parenting.
I know I can do it better.
We are enjoying a day off. It’s Easter weekend. Reflecting Christ’s sacrifice on the cross. He is cutting up vegetables. He cuts himself and is bleeding everywhere.
He can’t even let Jesus Christ take center stage.
He needs all the damn attention!
Why does he think his needs are more important than mine?
Now, I need to help him feel more comfortable.
Constantly complying. I am not a part of the equation. I have been SPEAKING for years, repeating myself constantly. I don’t ask anymore. I don’t ask for things. I don’t ask for affection. I am living in limbo. Boundless. Floating.
I am invisible.
I need to be released from this responsibility that I’ve been carrying for too long.
For the last eight years we’ve drifted apart, each of our roles were extremely different from the others.
I was primary care taker of the baby, he just worked to not be in pain. He was in and out of doctor’s offices, and in bed most of the time he was home.
He was cold to me. He couldn’t help it. I know.
To me, he had it easy: just relax, lay in bed, watch TV, take medicine, have another useless steroid injection.
Umm… when do I get the debilitating disease so I can sit on my ass all fucking day? I feel trapped, imprisoned.
I had grand expectations that he would complete me, complete my life and it would be this grand ball with dances and tea parties. Our roles are still tragically different, neither supporting one another, neither of us need each other. We are in different places, both have different goals.
We are in the same room, breathe the same air but we’re worlds apart.
The lack of trust and respect – it’s killing us. I cannot trust that he’ll be there. That he’s ALL IN. We’ve been having some good months lately… but soon, that chronic pain will take him and paralyze him again.
That anxiety keeps me in the crazy.
And… so here’s the state of our union. I’ve become accustomed to not including him in my day. He’s had so many limitations, so many special needs. He’s never been able to engage, so I forget that he’s there sometimes.
Somewhere between the chronic pain, taking days off for doctor appointments, disappointments, missed opportunities, we disappeared. I stopped trying to make the structure we live in a home. He was too busy or too sick to care. He didn’t want me. I got used to that.
I became hard, and cold. I worked so hard to leave my father’s house only to end up exactly where I started. I try. He tries. We both feel the unbecoming of us though. It was a slow fade to black.
I’ve veered on a divergent path and, if I’m being honest, I don’t care if he follows or goes in the opposite direction.
How the fuck did I get here?!
I didn’t say no when I was victimized as a child. It happened on more than one occasion. He made me feel special and important.
Years later, I realized I was just his prey among many.
My brain started to split. There was the good me and the bad me.
Then I started cutting to feel something. ANYTHING. Then I would only feel anger, resentment, bitterness, shame.
Then I would drink myself to oblivion to be numb again.
And round and round we go….
I watched my father beat up my mother countless times. I was powerless. The only thing I could do was disconnect. Detach from the situation, go off in my imaginary world.
These days, the only real way I can relate to men is if they are anonymous, objectified, and made common.
Maybe if (they or) I become more anonymous, objectified, common, I don’t have to engage. I can pay to play. I can pay to heal in a way. I can acquit myself of the emotional debt.
I would have room for… selfishness.
I am neglected.
I’m the product of parents who didn’t know how to fulfill my emotional needs. I have an eating disorder,
I alternate between believing both that “my parents gave me everything; I had a happy childhood; I don’t have any reason to be this messed up,” and “my parents emotionally neglected me; I had an awful childhood; no wonder I am this messed up.“
I fantasize about being in the hospital because that seems like the ultimate (and only) way that people might finally see me and care about me. Logically, I know that it’s not true, but my emotional brain is convinced that being sick or hurt is the way to get the love, attention, and care that is not present in my daily life.
I am ashamed.
I’m a 22-year old who is still desperately attached to my mangled childhood stuffed animal, Lambie.
I surreptitiously, but uncontrollably, pull out my own hair. I know have trichotillomania (and dermotillomania while we’re at it), but it’s one of my most shameful “secrets.”
I eat spoonful of Nutella straight from the jar, and sometimes that will be the only thing I eat for the majority of the day.
I am depressed.
I am pained getting out of bed in the morning. It’s hard to relate to people who casually say, “Yeah, I didn’t want to get up this morning,” but may not understand the gravity of depression. It hurts to the bone.
I have trouble taking my daily antidepressants because a hidden part of me doesn’t believe I’m worthy of feeling better.
I am obsessed with filling my brain with as much information about mental illness as possible.
And yet, no matter how much I read books, articles, and studies about eating disorders, depression, eating disorders, anxiety, or impulse-control disorders, I struggle to control my own mental health.
I have a hard time with “I’m depressed.” Maybe because I don’t believe that the real me is just buried under mental illness. It’s more like “I’m a person living with depression.” It has taken so much of my personality and soul out of me, but without depression, I am a lively, joyful girl.
I am taking care of myself (or I’m learning to).
I practically begged my parents to see a therapist, nutritionist, and psychiatrist, when I was only 15 years old. It certainly wasn’t easy, especially because we didn’t talk about anything “emotionally charged,” but I knew that it was a step I had to take in order to alleviate my pain.
I reach out to others when I need it most. Even though I isolate, too, I also know that in moments of desperation, I do instinctively ask for help and support from those I trust.
I treat myself to occasional manicures, special purchases (a dress, a pillow, some art supplies), and a lazy Sunday.
As much as my brain tries to trick me into thinking that I am worthless and unlovable, I try to actively do things for myself that remind myself that I deserve care.
I am brave.
I share my story with very few people, but when I do, it is the most rewarding experience. Sharing real experiences and thoughts is how I create deep connections with people.
I moved to Denmark for my first job out of college. I don’t speak the language, I’ve never been away from home for more than four months, and I left my entire support network at home.
I am working full-force in therapy at facing the demons and insecurities I have hidden for years. I am taking charge of my life by learning to be vulnerable, accept my flaws, and love myself in spite of them, and find happiness for the first time in my life.