At the end of last month, I wrote an entry about one of my little brothers and I wanted to share it here with other Pranksters. Normally this is not the type of stuff I share, so getting it down was pretty difficult. I knew if I didn’t do it, it would eat at me until I did. So here it is…
I was at a loss for words, which rarely happens, so I got my son (The Boy) ready for an outing. Which means I handed The Boy off, informing my husband (Gadget Guy) that he needed to take a break, so I didn’t go outside smelling like a gym shoe.
Given the promptness of Gadget Guy’s willingness, I must have smelled pretty bad.
Once I got cleaned up, changed a massive poopy diaper, and got in the car, I decided to go to the mall. I had to take my wedding rings to get cleaned and decided that walking the mall would be as thought-provoking as anything else. Plus, it’s still reaching the low 100′s here in the afternoon, so outside was not an option.
Normally, the mall provides lots of things for me think about: obnoxious teens, people who touch my child without asking, panic attacks in the elevator, using the family bathroom, and the list could go on.
However, this is what caught my attention:
It’s an ornament. I found it in Hallmark.
And this little thing was enough to make me start crying. I was bawling like a baby in the middle of the Hallmark store. My son, who is a 5-month old baby, looked at me like I was a crazy person and the Hallmark lady asked if I was okay.
I muttered something about stubbing my toe, picked up the ornament and paid for it. Then, I high-tailed it out of the mall, as to not make a bigger spectacle of myself. I’m sure you’re wondering how this tiny replica of a 1939 musical fantasy character made me break down like I did.
Sit tight, because I may not make a whole lot of sense here, as I’m already getting teary-eyed at the thought.
I’m the oldest of four children. I have/had two brothers and a sister. I say “had” because one of them died.
Little Brother #1 wasn’t even the one we thought we would lose, but Little Brother #2′s story will have to be shared another day.
Little Brother #1 was a little over two years younger than I was. We grew up together and were bestest friends until we hit puberty. Then we fought, argued and generally didn’t get along. All fairly normal sibling rivalry.
When I went off to college, things between the two of us improved. We appreciated each other a bit more and decided we just needed to agree to disagree and move on.
For the most part, this worked.
Little Brother #2 did things in his own time and in his own way. He had severe ADHD and at 14, decided not to take medication to treat it anymore. He graduated a year later from high school, didn’t go to college, and was (medically) discharged from the Navy. He bounced from one job to another. We were complete opposites in most of those regards, and I had a hard time relating to him.
And he always had a difficult time in social situations which was particularly hard on him. He was a friend to a lot of people, but didn’t have a lot of friends. He was easily taken advantage of. I didn’t understand why he would give so much of himself to other people when they didn’t give him the same in return.
He did excel in dramatics. He was one of the youngest students ever to be inducted to the Thespians Cub when he was in high school. He wasn’t cast often, but tried out for every play and he became the go-to guy for backstage production, lighting, and set design.
People referred to him as Tin Man. I’m not sure where the nickname came from, but he wore it proudly. He had it put on his Letterman jacket instead of his name. It was on his track jersey, the back of his drama t-shirts, and even on his class ring.
In the beginning of 2007, he died.
He was 21.
He was in a car accident, but it wasn’t drugs or alcohol, thankfully. He fell asleep at the wheel and rolled his car.
If there was anything fortunate about his death, it was that no one else was involved, and the freeway was completely empty when it happened. He was pronounced Dead On Arrival. The Medical Examiner said that it would have been quick and that he hadn’t suffered. I HAVE to believe that. I can’t believe that he sat in pain, I just can’t.
My parents didn’t handle it well. I stepped up to take control of things where they couldn’t. Gadget Guy was a live saver and helped support me while I tried to support them.
Little Brother #2′s funeral was epic. There were almost 400 people in attendance. It was amazing to see the sheer number of people crammed into the small chapel as I gave his eulogy. And after the burial we had a huge party in his honor.
In the end, all those people that my brother was a friend to came to say goodbye.
To honor his memory, and celebrate the one thing he loved the most, my parents had “Tin Man” engraved under his name on his headstone.
Now, I can’t watch the Wizard of Oz without crying. I can’t even look at an image of the tin man without choking up.
That is why I was bawling in the middle of the Hallmark. I didn’t even keep the ornament.
Instead, I gave it to my mom.
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.
He was diagnosed with co-morbid bipolar disorder, autism spectrum disorder, attention deficit disorder, oppositional defiant disorder, depression, and anxiety.
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.
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.
When I was young, I always hated gym. I was never good at it. The running and the throwing of things was just never my bag. I was always short of breath and sometimes even came close to fainting. I always chalked it up to being a fat little kid who was grossly unathletic.
I lived for ninth grade because I only had to take a semester of gym and then it would be over forever, or at least until I got to college. I finished 9th grade and gladly went on my merry gym-free way.
Fast forward to 2007.
I had been out of high school and was in my third year of college. I began experiencing back pain, the likes of which I had never felt. I finally went to the doctor, and while the Nurse Practitioner was listening to my heart, she looked up and asked “You have a heart murmur, don’t you?”
I had never heard such a thing.
After tests, including one where they sedated me, shoved a “probe” down my throat, and looked at my heart (after which I cried for want of a cheeseburger), I was diagnosed with a regular heart murmur with Mitral Valve Regurgitation (which I described to people as “my heart pukes”) and Sub-Aortic Stenosis.
Some time later (2010-ish) my dad, who has CHD, began having Atrial Fibrilation episodes.
He eventually got in to see the doctor his brothers go to, and we loaded up to see if he could fix my dad’s bum ticker.
The next phase of the story I wrote about earlier in this post. During this time I was re-diagnosed with a condition called Hypertrophic Cardiomyopathy or HCM for short.
All of the things that I had experienced as a kid, all of the shortness of breath while running, all of the blacking out in PE episodes – they all made sense now (granted, they still don’t account for my athletic abilities or lack thereof).
After my diagnosis, I was scared. I began taking my drugs like a good little girl and prepared myself. I scheduled an implantable cardioverter-defibrillator (ICD) implantation for July, the month after my dad got his. I recovered just in time to return to work for the school year, and I am feeling better than ever.
After all of that worry and fear I have come to realize some things.
Not every 25 (almost 26) year old can say that she is battery operated.
Before any of this happened, I used to tell my students that I had a plastic heart; now I (sort of) have a metal one.
I tell people that I am part computer, or even bionic.
I make sick jokes about being shocked all the time.
My dad and I even joke about starting a doo-wop group with 2 of his brothers who have ICDs called The Pacers.
I never knew that having HCM and an ICD could be such a source of amusement. I even love to freak people out by letting them touch it under my skin. There is nothing better than the slightly horrified look on someone’s face when they touch the hard, metal rectangle on my chest.
In the end, the laughter and the jokes far outweigh the fear and uncertainty that I had before I got the surgery.
Plus, I hope that in the 6-10 years that it will take for me to need a replacement, they will have integrated an MP3 player into the device.
So here I am, not yet 35, and wading into the nastiness of my second marriage falling apart.
I guess I could say that I got married the second time because it seemed worth betting that the first time was due to *him…” so a different guy could fix that, right?
But the problem – if you want to call it a problem – is almost certainly me.
My mom said it brilliantly in her recent email to me:
I guess it’s truth out time, and I’m about to be a bad mom.
Truth – Dad wanted to hogtie you and send you to Tijuana before you married Steve*, but I talked him out of it. He was really upset, but I thought he had Steve pegged wrong.
Truth – after living with Steve for two months, I agreed with your father. I wanted to bitch-slap Steve so hard his head would fall off.
Truth – he lied to you about stuff (mostly little things), but I never said a word because I felt it wasn’t my place. But one of those lies cost you 5,000 dollars. You have no idea how furious I was or how much I kicked myself.
This really isn’t the time to be landing this stuff on you, but Dad and I both are feeling very responsible for our little girl getting hurt (again) when maybe if we had just opened our mouths, we could have prevented all this. Of course, to be realistic, it may not have made any difference, but these thoughts cross your mind when you’re a parent.
We both agreed when you were little that whoever married you would have to be one hell of a special kind of guy. (In Dad’s words, “God help him”). But I always pictured you either a) single, and blazing through the world in a cloud of glory or, b) married to a guy who was your equal – smart, confident, strong-willed, motivated and out to make his mark on the universe, but at home would have to know just when to push and when not. NOT easy to find!
However this turns out, we’ll always be here – doors and arms open. Remember that. And don’t worry, next time, we’ll speak our piece – welcome or not – and hogtie if necessary!
By the way, your brother wants to kick Steve’s butt for hurting his sister. That’s his way of saying he’s there for you, too. And if you want me there, just call. I can grab a flight and work be hanged! I love you very much – we all do.
The beautiful part is that they said almost the same thing after my first divorce, although she left out the part about how she always pictured me single.
That would have given me a lot of strength, I think.
I spent my whole life thinking that I was a failure if I wasn’t married – or conversely, that being able to “get guys” to want to commit to me was some kind of major success. I think having a best friend for most of my life who was openly jealous of my relationships probably didn’t help.
But, hey Mom – THIS time I was obviously very hesitant about getting married, and I ASKED you all to tell me if you had any hesitations!
And good grief, Dad, why couldn’t you grow a pair? You knew Steve best, and if you’d said it was a bad idea, wild horses couldn’t have gotten me down that aisle.
Something tells me, though, that I’m not the only person here who bought into this assumption that women simply “should” get married; that getting married is always a victory, even if your (first) husband is half-jokingly gloating that “someone needs to get [you] under control”.
(He did, and so I compensated for that the next time by marrying someone who wanted ME to be responsible for everything. And I was, but it cost me everything I wanted to do for myself!)
I feel like I’m waking up.
Men attacked me when I was a child, so I spent all of my teens obsessed with them, but avoiding any actual contact with them; then I got married as soon as I could; then, divorced and terrified of single motherhood, I got married again as soon as I could; and now here I am fighting my way free again.
It’s been a day and a half since he moved out (temporarily, because things turned violent, though that wasn’t the pattern or anything – but can I add that having the ability to leave immediately if someone breaks that rule with me is something it turns out I REALLY value?), and I’m not in any way looking forward to the next steps, but I do feel like I can see a clear path for the first time in a long while.
You may have been a little (lot) late, but that helped a lot!
(And you can bet your hiney that when MY little girl wants to get married, I’m making her a laundry list of every reason in the world I can think of not to – if she still does, great, I’ll support her; but she deserves to know what I really think. I guess sometimes the hardest lessons you teach your kids are the ones where you show them how not to do things!)