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.
My oldest son is truly in a bad bad place.
He’s a very angry child. We sought help from his therapist and psychiatrist, and finally, after weeks and weeks of fighting we got diagnoses.
It finally felt like we were getting somewhere.
Until…. that deep dark place got worse. Now we’re fighting every day to keep him out of inpatient hospital stays.
I walk on eggshells when we talk because I don’t know what is going to upset him. I’ve had a continuous migraine for the past five days because just thinking about him makes my own anxiety sky high.
He’s a good kid and has such a good heart – I just don’t know how to help him.
Does anyone have any ideas? I am all out of ideas myself and I’m mentally worn out..
He’s just so angry and mad at the world.
I just want my happy kid back.
One of those things that I always figured I’d do when I was bored and had scads of free time, which, you know, I’m just swimming in with my three kids and houseful of pets, was to learn to decorate cakes.
I somehow forgot when I was hatching my Great Plan, that I have absolutely no eye for detail and have about as much fine motor skill as my poo-eating dog. But yes, in my head, I was going to be the next star baker.
Just like I was going to be the next Rembrandt, Britney Spears, and uh, Martha Stewart, because all of those plans were SO SUCCESSFUL.
But when I saw that I could buy something that fit my “I never got an EZ Bake Oven” fix AND test my prowess as a Master Cake Baker, I was all over it. (if you have no idea what I’m talking about, go here)(then come back)(and you should know that I do love me some Pioneer Woman)
Really, I didn’t see how I could go wrong. Except that a 29-year-old woman with a full kitchen of her own had bought a toy cake bakery. That seems all kinds of wrong when you put it THAT way.
But let’s not dwell on the negative here, Internet!
Microwaving, AWWW YEAH!
Now, see, THAT is the kind of cooking I can do. Short and sweet. None of those wonky STEPS that I can misconstrue or FORGET because I’ve accidentally wandered off to see what happens when I put the cat in a box.
While I don’t know why someone would want a pamphlet of “DUFF” inside a box clearly marketed for children, I suppose that is neither here nor there. He seems a little, uh, CREEPY and vapid, doesn’t he? (I know he’s on the Ace of Cakes)
No accounting for taste, I guess. Which is why you read my blog.
While shit, man, that’s waaaay too many instructions. I don’t need to read instructions. Those are for sissies.
Why, isn’t that perfectly darling? A wee cake decorating set! I can’t figure out what most of the doo-hickies are for, but, you know, I AM READY TO LEARN. Providing I don’t have to READ WORDS and FOLLOW INSTRUCTIONS.
Well, THAT is fancy-pants. It’s either a toothbrush holder…or a sex toy. Kind of advanced for children.
If parents can get outraged by the Fresh Beat Band, why not providing our children SEX TOYS!!1!! OH THE HUMANITY!!
Guess you know what I’ll wander off to do.
BRUSH MY TEETH, YOU PERVERTS.
Here we go, with some mother-humping yellow cake. That’s wicked yellow and I stirred it approximately 4.3 times before it was mixed thoroughly. Because that is the way I make cake, bitches.
Well, now, here I have expertly poured two thimbles of cake into the microwave pan where I shall bake it for exactly 30 seconds. How can this be bad?
(cue ominous music)
Well. That…uh, looks appetizing. It’s really a shame that I can’t make this blog post scratch and sniff, because this smells like burning hair.
nom nom nom SOYLENT GREEN nom nom nom.
The Soylent Green patties are, I should note, about the size that one might expect to feed a wee field mouse. I am holding my lens cap up for perspective.
Cue the old joke… “the food was so bad….And there was so little of it!”
In an effort to cover up the horrible yellow color of the cake, I have chosen blue as my fondant color. Note my expert mixing technique. I should probably get a medal from the Mixing Olympics.
This fondant looks like a pile of, well, blue…poo.
I’m certain that I can roll it out and make it look better.
Oh. Well. Um.
Maybe I should have read the directions.
I know, I’ll read them now!
Okay, that looks NOTHING like what I’ve got.
Uh. Well. I KNOW. NEXT STEP.
Icing. I can cover this with icing. THAT’S ALL. I bet it’ll look as good as new in NO TIME.
That looks a lot like we’re about to artificially inseminate something. WICKED.
My pre-iced cake on it’s pretty little platform. Doesn’t it look like, well, someone with no thumbs decorated it?
Scratch that. People without thumbs could do better. BLIND people without thumbs could do better.
Aunt Becky’s Weapon of Mass Destruction. The ICING GUN. Prepare to meet your MAKER.
I genuinely do not know what I did wrong here. It appears as though my icing gun misfired.
I, um, I swear guys, this NEVER happens to me.
(cue inappropriate jokes)
UGLY CAKE, PREPARE TO MEET YOUR MAKER, uh, PART II.
Awww! Lookit my whimsical, drippy heart! With some balls thrown on it for good measure. Because everything is made better with colorful balls and icing.
(go ahead)(make your jokes, people)
Ladies and Gentlemen, this is the reason that you do not want me to cook when you come to my house. THIS is the reason that I order takeout.
Because while this appears to have been done for comedic value, it actually was not. This was genuinely the best that I could do.
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.