About Me...

 So, I've decided. It's taken me a long time. Years actually. I used to do this. Write. Blog. Every single day, for years and years. I poured my heart and my life out upon my keyboard each night, after my kids were asleep and the house was quiet. It was my time and sort of my therapy, actually. And then I stopped. In fact, I somehow took my last blog down so completely and completely by accident, having only meant to take it down from public view, that the final years of my writing are now lost forever. Thankfully, my earliest writing was saved. It chronicles the life and eventual death of our youngest son, Cooper. You probably think that is a sad and tragic tale, and it did have it's moments, but it was also a beautiful journey, filled with so much laughter and joy. The last years of my writing were more about the grief. The time after we lost him and also the time of discovering that another of our children suffers from the same God Damn disease. Some people didn't like the ugly parts, the very true and real parts, of either story and their ugliness is what finally made me hide away. 

I have missed the writing, so I've decided to say fuck it to all the assholes and come back in an even more honest way than I ever had. Because this entire life of mine, my entire journey, has been one hell of a ride and I have learned a lot of things and I have a lot to say. As I recently stated in a FB post that I was tagged in, I'm not for everyone, but I'm for some. There are people out there who get me and understand my, well, my sense of humor and the only thing that has helped me to survive. My amazing husband and I share this dark sense of humor. He tells everyone that he is dead inside and prefers it that way and if he ever begins to feel feelings, he just needs a higher dose of his medication. Our 3 beautiful kids share in our humor very well and we haven't gotten too many calls home from school about them...just that one second grade teacher to let me know that my sweet Caroline was telling a joke at her desk that began with, "Okay guys, a Priest and a Jew walked into a bar..." She was stopped by dear ol' Mrs. P before she got any further and the funny part to Kevin and me was that the joke was really a Priest and a Rabbi joke (and it wasn't even dirty which is why she knew it in the first place. I mean come ON people. She was only 7 years old. We do have some standards. Dirty jokes were not allowed until like 10, at least for the oldest child. Standards go down hill fast with each subsequent child!) and we had no idea where in the Hell she had learned the word "Jew" and made a sort of proper substitution when she forgot the word Rabbi. Our brilliant jokester is now a college Freshman at Pace University in NYC, studying in the Honors College  to be a Director and Playwright, so we must have done something right. Adam is currently working on college applications, as he is a senior in high school and a Drum Major. He is my only child who I have never gotten a bad kid call home about. He saves all of his snark and sass for me at home. He is also my heart and always has been. My being away so much during our many hospital years with Cooper years ago and even more recently with Oliver affected him the most. And I will never be able to forgive myself for that, no matter what any doctor, therapist, or friend tells me. In my head, I know I couldn't be in 2 places at once, but in my heart, I am his Mom and I should have been with him just as much as I was with his brothers because he is just as important.  And then there is Ollie, the family clown and mouth. Don't tell him your secrets. He doesn't mean to tell. He just can't not talk. He never isn't making noise. And I know this very very well, as I have been homeschooling the child for the last nearly 2 years, so I'm with him ALWAYS. He even talks when he sleeps. If he isn't actively talking to you, he has on one or sometimes even 2 sets of headphones (One for music and one for video games, hello!!) and he is singing, so there is always some sort of noise surrounding him that is coming out of his mouth. I love him so so much and we all are used to it, but we also all encourage him to go hang out in his room for a while each day. As I said earlier, Oliver is our other child who has been diagnosed with the same disease that stole Cooper from us: Mitochondrial Depletion Syndrome - a rare beast among this already rare disease. Unfortunately, the exact genetics of their disease is, as yet, undiscovered, but I plan to talk more on Mito Disease, the community as a whole, and Advocacy in another post, so more on all of that stuff later. Ollie is currently the healthiest he has been in years, which is a wonder for all of us to see. About 2 years ago, and for about the whole year prior, he scared the absolute shit out of us with how sick he got. He had been struggling more and more for years, with his doctors adding more and more interventions and Kevin and I literally taking him from hospital to hospital in a desperate attempt to find some way, any way, to help him. In the end, we wound up back at the old Mito Clinic, no closer to answers and with a sicker child than we left with him, but he had caught the flu, which caused his stomach to fully shut down and from there, things just spiraled down. Ollie is a fighter, though, and, despite some nearly catastrophic failures on the part of one team member (more on that in another post, too...about Doctors and why they aren't always right), Ollie has fought his way all the way back and then some. He's in 9th grade now and still plans to be a chef, although he'd like to take a crack at AGT with his Voice, too. If you couldn't guess from the title, I am not the sort of Dead Kid Mom who shies away from the truth of how many kids I have when someone asks me who doesn't know me. I have 4 kids. Cooper was. He came into this world 10 weeks early and began his fight. He never had any breathing issues in the NICU, but boy was it hard to feed him and that would really define his life. Eating was always just so very very painful. As soon as we came out of the NICU, we were brought right back in because his pain and struggle to eat was so great that his heart monitors were going off all of the time. The NICU doctor (who I thought was a total jackass) was sure my worry and fretting was because I was a nervous mother. I was like, dude, this is my forth kid, second NICU kid, my first kid had her first eye surgery at 6 months and has had 2 more plus an open hip reduction, 2 months in a spica cast following surgery WHILE I was at the very end and then overdue with my second child, then she was in a brace for 6 months and in PT to learn to walk, run, jump, go up stairs, EVERYTHING for 5 years, my second child had horrendous reflux, was allergic to everything, causing me to go on the total elimination diet to be able too nurse him, and then he had Sandifer Syndrome, which looks like seizures, because he was in so much pain from the reflux, my third child was also a preemie, spent time on the vent, had feeding issues, severe reflux and allergies like his big brother, was FTT for a while, was delayed in all things physical, but talked in sentences at 9 months, and you think I am a nervous mother? Yeah. He shut the hell up after our little discussion. The nurses in the NICU and the Pedi unit refused to feed Cooper because of how much pain it caused him, so when I was sleeping one night, they dropped an NG tube and gavaged his feedings over night while they were letting me rest. Their support of my claims of his breath holding, choking, and heart rate issues during feedings that took hours and tired him out went a long way and we started seeing a GI doctor who Oliver still sees to this day, our beloved Dr. V. Cooper's story is long, very long. I plan to post it here in bits and pieces from my old blogs at some point. He was a shining light in our saddest times. He never questioned or complained. He yelled for his nurses when it was time for his medications as he got a little older (okay, he was 2.5 when he started pooching out his little lips with an attitude and yelling out his hospital door for who and what he wanted, but he basically lived there, so everyone laughed and that just encouraged him!), he sucked his thumb in the cutest way while holding on to his Duckie or Oofie, he gave the best kisses, loved with the biggest heart, and he had this smile and laugh that stopped time and made you want to laugh along, no matter what you had been doing. And God do I miss him.

And I'm going to talk about that and him and any damn other thing that I want to talk about. If you aren't okay with that, then you don't need to be here. I've been asked so many times by people in this difficult world that our family lives in, this place that no one wants to actually know about or talk about, the Dead Kid world, where did I go and why did I stop writing? I didn't honestly know who was reading or if what I had to say helped or reached anyone. And I have been asked the same thing by other parents in the Mito and Advocacy world who followed my blog for updates 0n Oliver's health as well. The honest truth is that I have been told by so many people, be it friends (although I use that term loosely here because anyone who has said this to me is no longer considered amongst my friends anymore), family members, through the grapevine PTO, Mom friend, Neighborhood, or doctor/nurse gossip (yes, that's a thing) that they really thought or other people they were gossiping about really thought that I should be over the whole Cooper thing by now. That I was really dragging out my grieving and it was making a lot of other people uncomfortable and I needed to consider these other people, who, by the way, had never lost a child's, feelings. I thought I was doing a damn good job. I get out of bed and put on a smile for everyone, and these days, the smile is even real a lot of the time. I mean for Christ Sakes, at least half of our friends, people who had been what I thought were my BEST FRIEND, people we literally thought of as members of our family, ACTUAL members of my family, people who had been IN our home and watched as our son DIED or arrived to share in special moments with us before his little body was taken away...all of these people who we thought would be there for us after he was gone had just turned their backs and walked away from us. Most of the time we never even found out why they stopped calling or returning calls or even making eye contact if they were in the same room as us, but a few of them told us that it was just too hard to be friends with us. It was too sad to witness this great loss. So now I know. I know who was just with us to be able to tell others that they were there. Which is really fucking disgusting and a whole lot of psycho. Who becomes friends with a family of a child with a terminal illness just to say they were a part of that whole thing...a witness to the messy bits and even to some of the absolute best bits. And the family members who never bothered to actually get to know Cooper, although we begged and pleaded with them to please come see him while he was alive and well, but only came around at the end, for the last bits, to be a part of the tragedy and film and take pictures with the nearly dead child. And once he was gone, they were all gone. There for the funeral, sure, but then just gone. Some of them gone for good from our family's life, again for reasons we have never learned. And I've tried. God I have begged. I have called, invited, asked for calls back, left messages, sent letters in the mail, email, messenger,  and occasionally, I will be told that I'll get a call back with a date to get together soon or even get an answered call where we talk for a bit, but nothing changes with anything. And I'm tired of trying to apologize for still grieving when I am not sorry about it at all. And I am tired of feeling like I have to apologize that we have another child who is ill, because I'm not sorry at all about that either. I'm damn proud of Oliver and the fight that he battles everyday. It's messy and hard at our house sometimes, but that doesn't make us bad people. So, I am certain in who my friends are and I can't say that I have a whole lot of them, but that is okay. The ones that I have I know for sure are the real deal. They are the ones who rang my door bell over and over on days I refused to come out of my house, forced their way in, got me out of bed, and made me drink mimosas and eat breakfast with them. They are the ones who knew how hard the first day my kids went back to school would be, so they took me out shopping and made me buy a pretty sundress with a few sparkles on it and some sparkly eye shadow because everyone needs a little sparkle in their lives. They remember Cooper's birthday each year and send a card or a text just to let me know that they know that the day isn't lost and that they remember that Cooper was and that is everything to me.

All of this is about me.  And I plan to write about me and what I have to say. After nine and a half years of missing my Boy, fourteen years of being an advocate for a medically fragile child thanks to becoming a mom to my first child nearly 19 years ago, who gave us a run for our money and taught me that doctors are not always right and sometimes parents know best, and nearly 20 years of marriage that has survived all of our crazy, I think I have learned a thing or 2. I've definitely learned that I'm tired of being nice and doing things because if I don't, someone else might feel a little uncomfortable. Life isn't always comfortable. If it was, it would be really boring.  Back when we were kids, my big sisters used to make me call their ex boyfriends or even girls they were in fights with and duke it out for them, because I refused to back down. If they ever got back together with their exes, those boys were forever slightly terrified of me, and rightfully so. I wasn't taking any shit. As an adult, there are some famous stories of me (ahem...let's never forget the great bridesmaid dress snafu or 2000, shall we? I know a certain sales rep who never will and Comcast still shudders at my name because they are so COMCASTIC!) giving serious Hell to some customer service and insurance company people, Oh and DME companies (Burn in Hell Apria!!). My Mom still makes me do all of the calling to businesses for her if she has been slighted in any sort of way. I just don't take shit off of anyone. So why have I allowed myself to be chased away from reaching the communities that I love to help the most, doing something that I enjoy doing that, honestly, helps me a whole hell of a lot, too. The answer really and truly is that I do not know. This life can be or at least can feel like a constant and unending fight. There is never time to come up for air. Writing is like breathing for me. It makes me feel like I have taken a deep breath of calming air. That's why I'm back. Because this is me, like me or not, and I refuse to shut up or be pushed away, even though being friends with me is hard. 

I'm going to end this with something that I wrote in an email to family and a few friends back in 2008. It was before the worst of the shit had hit the fan with Cooper and my updates were written out in emails to them. I didn't have a FB account. Was there FB then? I don't know. I was a member of a couple of "Birth Boards" on a forum called Baby Center that I had stumbled across while bored at work and pregnant with Caroline back in 2001. I wanted to know what my due date was based on the date of my last period. I had just found out I was pregnant. Anyway, Baby Center was the first "Due Date Calculator" that popped upped in my search engine and once it gave me my date, it had a little button that you could click to "connect with other moms due at the same time." I had no idea what that meant or how that one click would for real change my life and what it means to know people for more than 18 years now, even though I haven't met all of them in person yet.  Anyway, sometimes, I would post my updates about Cooper to my original birth board for Caroline - the bond I had with them was tremendous, but it was hard to find that on an entire board like that again. I found that bond with a small group from Adam's birth board, as well as with an amazing group of women from the "Babies with Birth Defects" board. Those girls are, well, I cannot fully or correctly find the words to describe how important they are to me and my family. We've been blessed to meet many of them and share our families with each other. They often know about what is happening with me in my heart more than I will admit to anyone else on the planet and they love me anyway and EVERYONE should have a group of friends like that. Sorry, I've greatly diverged, but now you know I'm one of those weirdos with internet friends, although isn't everyone with any sort of social media one of those these days? I guess I'm weird because I actually know my internet friends for realz. Ew. Who even does that?  Okay, so this is something I wrote after an onslaught of emails and phone calls from friends calling me something that I didn't feel then and have never felt of myself, no matter what has been going on with our family, or how crazy our lives have been. I have always just been me. But I've been reading back over some of my old blogs and found this in an incorrectly marked file tonight. After I wrote it, my sister Liz told me I should write. At the time, she meant a book. I started a blog instead. And a book has always been a dream but, well, life. I'll be back tomorrow to talk about something important to me...my thoughts on grief. Thanks for checking out the new blog.

May 18, 2008

The truth is, I am no where near the "super mom" that so many of my friends keep saying I am.  The truth is, I am scared to death and most days, am just getting by.  The truth is I want to be all things to all people, but I am learning that I can't be.  The truth is, sometimes I let someone down and the hardest people to let down are my kids, but sometimes, I have no choice.  The truth is, the truth hurts.

 How does a mom make those decisions?  Do I go to field day with the other Moms on PTO or do I keep the appt for Cooper that has been set up for months?  Do I let my 6 year old down because she is pretty sure that I will be the *ONLY* Mom not there or do I do what I know is best and run from one end of town to another with Cooper for appts.  I try not to have to make those decisions, and sometimes I get a little wink from God so I won't have to, like a weather delay for Field Day that allowed me to keep appts AND make sure that my 6 year old was not the *ONLY* child there without a Mom present.  But here is a glimpse at my calendar from a week ago...and this is just 2 days worth...

 Wednesday: 8am Take Caroline to school; 8:30am get Adam and Oliver to my Mom's house, trade cars with her, and Mom is now in charge of Adam and Ollie and getting Adam to and from school; 9:15am -10:45am be at TCH satellite office for OT eval for Cooper; Noon - be at TCH downtown in the Medcenter (40-60minute drive) for Coop's appt with genetics; Coop spikes a high fever - call Ped from TCH downtown - Ped says come in now; Drive back to Ped (by the TCH satellite office 40-60 minutes away - ends up being 90 minutes because of an accident) for a 3:15appt; Drive to Mom's house to trade back cars and pick up my 3 oldest kids - get that God Wink about the rain delay for Field Day.

 Thursday - 8am Take Caroline to school - Mom met us at our house to keep 2 little guys for me and to take Adam to school; 8:30am - Volunteer appreciation coffee and K performance at Caroline's school; 10:30 - read to Caroline's class; 11am - Lunch with Caroline; 11:45am - be at Adam's school to help set up Mother's Day luncheon; 12:15-1 - Mother's Day luncheon with Adam; take Adam to my Mom and pick up Cooper; 2:30 - meet Kevin at TCH satellite office to meet with surgeon about Cooper's surgery; Go back and pick up 3 big kids from Mom and head home

 Somewhere in there was Kindergarten round up, a second Ped appt for Cooper, ballet, and who knows what else.  Plus the laundry got done and everyone ate a home cooked meal at night. Oh, and I made dinner for another Mom in Mom's club.

 This might be where the super mom cape idea came from from my girl friends.  But what no one realizes is that at least half of the time, I let someone down.  I can't be at every PTO function or presentation.  I can't make it to after school play dates or even during school playdates for Oliver.  And my patience these days is thin.  My family and my husband are worried about me and wonder where my fun loving spirit has gone.  I put on the happy front for my friends, but at home, I am sad.  I am sad that my 18 month old has to have more surgery because no matter how hard we have tried, we can't get him to eat. I am sad that unknowing people can ruin my whole day by making me second guess our decisions with simple comments like - "My baby is a really picky eater, too...all kids go through it."  And as dumb as it is, I ponder that thought and think about what I am doing wrong.  But then I remember that the ONLY reason my baby is even gaining weight is because he is on one of the highest calorie formulas on the market (and don't get me started on how many days and hours I spent fighting the insurance to finally get that covered).  And I remember that at least 7 doctors agree that this is the best thing for Cooper.  And I remember that Cooper's stomach can only hold 2 ounces when it is stretched to it's fullest and I know he can't survive that without this g-tube intervention.  But I still doubt myself and our decisions and wonder just the same if I have done all I can for him.

 And that doubt and worry is what has taken over my life and my fun loving spirit.  And I yet again let someone down.  My kids and I still dance around the living room and I still act silly with them, but right now, it is just an act.  It doesn't come naturally like it used to. I am a prisoner to my phone all day and night as doctors, insurance, hospitals, and nurses call me.  I panic if I can't find my phone for even a minute worrying that I might have missed a call that could take hours to get returned to me.  I don't want to be that person. I feel ashamed that I envy people with "normal" lives sometimes, but I only feel ashamed because as crazy as this all is, I wouldn't trade it for the world.  My kids are my life and my life is my family and I will always do what it takes and be where I need to be and go the extra mile to make sure my kids aren't the only ones without a mom there. 

 But sometimes, like right now I am just sad.  I want to be super mom, but I can't be because this super mom is worn out and worn down.  This super mom has hit her wall and needs a glimpse at the other side to know that there is a rainbow of happiness for all of my kids on the other side of that wall.  This super mom wants to know it is okay to show weakness and cry about the hurt her baby is going to have to endure and morn the loss of the "normal childhood" he hasn't had.  This super mom wants all of her kids to be nothing but happy without a care in the world.  And make no mistake...this super mom KNOWS she is blessed.  My kids may have issues, but we have seen so much worse and we are blessed that we haven't had to endure what so many others do. 

 And so today, I am hanging up my cape and telling it like it is.  I needed to tell it to myself.  I need to know things WILL be okay and my feelings are NORMAL.  It is going to be hard and who knows what may happen next.  I'll dust my cape off again if I have to to make it through.  But right now, I just want to be a mom who loves her kids and wants them all to be well.  I want to be a mom who cries when she is stressed out and plays silly games with her kids. I want to be a mom who is patient and happy and fun.  And I know I can be and I am that Mom.  I just needed to find her inside and forget about the front of the costume with the cape.  I just need to be me because that is the best thing I have to give my kids.