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.
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.
Those tables, forever missing one, are each welcome to share their loved one with us so that we may never forget.
I’m asking you today to pass this post around to anyone who may need it, you can use it if you need it, and you don’t have to have been the parent to feel the loss.
The way I generally organize these precious names is pretty easy:
Name, Parent’s Name, Date of Birth, Date of Death, Cause of Death, a Picture or 3, and if you feel like it, a bit more about your child. Who they were, what they loved, what they hated. Anything you’d like.
You can either send the information to me, firstname.lastname@example.org or you can use the online submit form. Or, you can lurk. All are acceptable and all are welcome.
I know I have a better life than a lot of people, and I try to be grateful for it.
I feel guilty when I dwell on my problems: other people have it so much worse: how can I complain? How can I mope around or be depressed?!
Oh how I wish I could talk to someone, to sit in a group and swap stories about burning the inside of our mouths, or panic attacks, or how much it sucks to have to lug all your belongings around in a garbage bag.
But I just can’t.
I have walked past the building where NA meetings are held probably a hundred times, looked at their website again and again, memorizing their schedule, but I can’t bring myself to go.
I’m afraid that people won’t like me because I’ve been clean now for four years, that because now I have a car and an apartment in a slightly decent area of the city, I’ll be told to get over it, to stop whining.
On the other hand, I think, what if I go to a regular counselor and I scare them? What if, when I admit to the time I smoked crack with my pregnant best friend, it’s too much and they kick me out?
What if I get the cops called on me when I admit to all the illegal things I’ve done?
Now I’m surrounded by people that, if they knew what I used to be and what I still am, would go running in the other direction.
I even tried to become an alcoholic for a few months; I drank myself into a stupor everyday, forced it into me until my brain chemistry was so out of whack and my kidneys hurt right through my back.
I still drink – get drunk – by myself, but I have to be careful because it makes my panic disorder worse. I drink just until I feel myself going crazy, stop for a few days, then back at it.
It’s funny, when my brother hanged himself, I was kind of mad that he took that option away from me: you can’t have two kids from the same family both kill themselves!
I’m okay with his suicide, though. I understand it was a planned out thing, so things were obviously pretty bad to get to that point. My brother didn’t speak, though; I was the only one he spoke to until he was about 17, and then he even shut me out.
After a while, I started getting paranoid that he was going to kill me, so I distanced myself from him even further.
I’m pretty alone now.
I lost most of my friends when I got clean, and I’ve moved to a different city since. I hate it here a lot, and most people here are way out of my league education and status wise. I have a few friends from work that I go for drinks with on the weekends, but I can’t really connect or open up with anyone.
I’m afraid to date again; my ex is still too fresh in my mind, and the thought of having to have sex again makes me uncomfortable. I don’t like being touched sexually.
It’s a shame because I would love to have children – they would give me something to focus on, to love and be loved back, without having to be in a relationship.
But I guess as of right now, it’s me, alcohol, and my two darling cats.
That ended with a police escort to the local hospital.
He spent three days there, changing his medication and talking to someone for ten minutes a day. He attended group sessions, and when he came home, he was ready to be better.
It was a week before he had another episode.
And since then these episodes have been happening every 3-5 days. Some are more serious than others. The last time, he threatened to kill himself.
Unfortunately, that isn’t anything new, except that, this time, he also threatened his mother and I.
We’re going to try therapy, but right now, it feels like he’s a ticking time-bomb, set to go off at any second. From the outside, I know it doesn’t look like he’s trying but he is, he really is.
So this is where I need help, The Band:
Do I stay, or do I go?
Do I walk away from my husband because he’s sick? Or do I stay, even if it’s to the detriment of my sanity, and my child’s well-being?
I don’t know what to do and I have no support network.
My son’s father was never in the picture, and my mother is a recovering addict – currently incarcerated. My godmother, the woman who raised me, is dead. I have a brother, but he has no job, and no home.
My best friend was witness to the gun incident, and has mostly given up on me. She told me that I’m codependent, and making terrible choices for my child. She thinks I should leave my husband, like she did. But her husband was an alcoholic – mine isn’t.
My in-laws have been terrific. Any time we need somewhere safe, their home is always open. But they are elderly – one of them is in a wheelchair. I feel I can’t burden them with this. I feel I am making them choose between their son, or their grandson and I.
Where can I go? What should I do? Please, The Band, help me. I feel so alone. I’ve prayed to every god I can think of, and I still feel so lost.
There is no handbook for when you marry someone with mental illness.
ive been wanting to post for a long time about what to say when someone loses a child. some days i feel like i really didn’t lose a child so much as i lost the possibility of one, or two, as it were. when my mother remarked that i didn’t really have them, i knew what she meant, and i agreed, after i recovered from the initial sting of her candor.
i didn’t after all. my dear ayla, the one whose bag of life was so grievously compromised, never showed us any signs of spirit after she was born. she was on the shuttle already as we nuzzled her warm body.
sweet juliet was pink, opened up her little mouth, stretched her limbs. morphine i cried out, “T! cut her cord!” so desperate was i to believe the deceit of her movements. silly people, my daughter is fine!
run along now. ah but reality resurfaced all too soon. the amazing wonderful caring loving angel at my bedside nurse worked swiftly to baptize her and deliver her to our arms.
this is where is gets hazy for me.
i know T held his sweet girl as she went on to join her sister. he says she made a face that looked just like her mama right before she drifted off.
i slept in and out of consciousness for hours, waking only to deliver the placentas and fill the space-age barf bags i was provided. when i finally half-shook my stupor, my mom helped me shower and put on a stretchy netted undie.
the doctor came in and told me i could leave whenever i wanted or i was welcome to stay. i gave him a ‘watchu talkin bout willis?’ kind of look. i was in no shape to leave and after awhile i was moved out of the birthing suite into a regular room.
T showed me the text he had sent out to our friends and families:
‘this morning at exactly 20 weeks we delivered Ayla Joy and Juliet Grace. we held them in our arms, baptized them, and kissed them goodbye.’
i never would have thought to send a text and i forwarded it, in disbelief, to many. one went out as an answer to a ex co-worker who had not 5 minutes earlier asked how everything was going: not good. its not good.
T wondered aloud exactly when all of his friends had started praying.
its just that the words that meant the most to us were unique. one friend wrote ‘you gave them such beautiful names’, another, ‘your little girls are angels now, they will always be with you and i will never forget them.’ after he and his wife could gather themselves enough to be able to call me; my cousin, a dad of two boys, cried with me. he said ‘i wish i could have met them’.
so what can you say when a baby dies?
certainly nothing that anyone said took the pain away, but having the girls acknowledged was something that meant a lot to both T and me.
when an older person dies, you don’t just say you’re sorry, you usually elaborate about the person and what you loved about them. that’s what we especially appreciated about these few comments. people were not just pitying us, feeling sorry for what we went through, they were remembering our girls to us and acknowledging that even though we didn’t really get to have them, lord, they were here.