My Dedication to my Mother

Yesterday, we said farewell to my mother, and celebrated her life. The following is my “eulogy”, if you will, that I gave, and just wanted to share it with those who could not be there.

She was born Cheryl Lynn O’Connell, on August 14th, 1949. It’s to my understanding that she was a vibrant child, full of life, always with a smile on her face. I can attest that her smile remained on her face, no matter what adversity life decided to throw at her, and there were plenty. It’s funny, because I was just getting to a point, in my writing, where I was forming questions to ask my mom, to get to know more about her childhood, high school, and young adult years … Knowing that her time here on Earth, was coming to an end, there are things that I just didn’t know about her, and thought that, maybe if I do an interview with her, I would have the answers to my questions about her life, and be able to pass that information along to her grandchildren … Unfortunately, my time ran out, as I was busy being her caregiver. A job I knew I would be great at, but at the same time, left me very little time for anything else, and, I wouldn’t trade that time with anything else in this world. It was my honor to be for her, what she’s always been for me.

As a child, she loved to cheer, dance and sing … But most of all, she loved to laugh. Her smile was enough to light up any room, and it makes me sad, how her smiled slowly disappeared, over these last 8 years. It makes me even more sad that my Marissa, only knew her Grandma like this, and anyone else who may have met her during this time, as this was not the woman who raised my brother and I. Her laugh was infectious, and her smile so bright and warm. She loved a great joke … and even a stupid one. I thank her for this, as it has been passed down to me. I love to laugh, and I love to smile, and there is no better medicine, than a stupid joke!

When my parents separated, she was faced with a hard reality … “How am I gonna support myself, and my two children?!” … At the time, she was a part time CNA, at Andover Nursing Home, and decided to go to school, to get her nursing license, and that she did. I remember being so proud to say that my Mommy was a nurse. I recall the countless times I would visit her at work. I would ask “Who doesn’t get visitors?!” and that’s who I would spend my time with. Making sure they weren’t lonely, even if only for a moment. I watched in awe, how my mother interacted with her patients, and how she would bring smiles to each of their faces … even the grouchy ones, and remember thinking how special she was. Not every person is born with compassion, which is actually a crazy thought to me, but know first hand, for this to be true. I’m not sure if compassion can be learned, but if it can, I most certainly know where I get mine from.

When my mother decided to leave NJ, and move to NC, because NJ was getting to be too expensive, I thought I was losing my world. Not gonna lie … I was mad at her. I had just had Morgan, my first marriage was going down the pooper, and what the hell was I gonna do without my mother being right down the road … In my adult life, through all it’s trials and tribulations, I have lived without my mother, maybe, 4 or 5 years, total. I wasn’t sure how I was going to survive, with her being 600 miles away.

Luckily it didn’t take long, before I moved down to Hickory, when my first marriage flaked, and had nowhere to go … there she was, with open arms, waiting for me, Seany and Morgan. We spent 6 ½ glorious years in NC. When my children had gotten to be a little older, I felt that I never wanted them to think I kept them from their father, so I made the hard decision, to move back to NJ, so he could be a bigger part of their lives. Now I was leaving her, and I felt awful, but knew I had to do it for my children. Fast forward two years from when I moved, and I got that dreaded phone call … “Stephanie … The biopsy is positive, and I. Have. Cancer. Stage 4, Vulvar Cancer …”

I remember thinking to myself … “Of course you do … Of course you do because I moved away … How am I supposed to take care of you being 600 miles away?!” My heart broke into a billion pieces on that September Day, in 2010 … But I put on a smile (along with my big girl panties) and said, “What do you need me to do?” and with that, between my brother and I, we got her through 6 weeks of aggressive chemo and about 3 months of radiation. Then in January of 2011, I flew down for a month, to help aid in her recovery from her vulvectomy surgery to remove the tumor. Mind you, Marissa was a new born, and always in tow with me, while my older two would stay with their father, and step mother, at the time, so I could be with my mother. It took a village, but we got through it all … I would feel bad for my husband, being that Marissa and I would be gone for weeks at a time, but we got through it!

It was when my mom came to visit for Marissa’s first birthday, that we decided to ask her if she would consider moving back to NJ, so I could better help her. She had lost her job, thanks to cancer … She really wasn’t able to make ends meet, and all I could think was, this is MY TIME to do for her, what she’s always done for me. After a few talks with my Saint of a husband, it was and easy decision, for us, we just needed to convince her. Luckily, it didn’t take too much convincing, and she moved up here with us, in November of 2011.

I was so happy to have her back in my proximity. It was a tough pill for her to swallow, as she had been so independent for so many years. Regardless, it was now my time to help her, in any way that I could.

Fast forward a few years, all things had been okay .. standard drs appts, and what not, until June of 2017, when her dr saw a suspicious lesion, that needed to be biopsied, and of course, came back positive in July. “What do we do now?!”, I asked her dr. Being that my mom’s first surgery, in January of 2011, had been so invasive, causing her to have a colostomy bag indefinitely. If they were to do another tumor removal surgery, they would have needed to take a ⅓ of her urethra, causing her to have a catheter, as well, and since her colostomy caused her to have two massive hernias, there simply wasn’t a spot to put a foley bag, so surgery was not an option. Radiation, was not an option, as well. She guided us the best she could, and my mother decided that she would go through chemo treatments, one last time. If it works, it works, if not, she decided that she would go untreated, and whatever happens, happens.

She started her treatments in September, once the kids were back in school. Every Tuesday, she and I made the trip to Berkeley Heights, 3 weeks on, 1 week off. We would listen to Howard Stern, and laugh … She loved Howard, almost as much as I do. Now when I listen to him, I smile, and think of her, and how many laughs we had together. She would tell me that I could easily be the female version of him, and that I should try … I would just laugh and say MmmmHmmmm!!!

January 23, 2018 was my mother’s last chemo treatment. The doctor had noticed that her tumor looked a little bigger, which now meant that the chemo was no longer doing its job. Which also meant there was nothing left that we could do. To make a long story, short, all resources had been utilized, and my mother needed to make the decision to stop treatment all together, and try to enjoy whatever time she may have left, which was hard to determine, at that time. The doctor could not give us any prognosis.

It was at this time that reality hit me, and I knew that it was only a matter of time, before we lost her. It was also at this time that I was going to start paying attention to her “lasts” …

When babies are born, we naturally look for all of their “firsts”, right … Their first smile, first giggle, first word, first roll over, first steps, first EVERYTHING … But no one tends to notice the lasts of anything, more so because we don’t know they are happening. So, I know that my mother’s last time in my car was on May 2, 2018 for her very last dr’s appt with her Oncologist, I know that the last time I physically helped my mother up the stairs, was on June 1st, 2018, after she got home from the hospital … I know that the last time she was herself, full of life, was the weekend of June 2nd & 3rd, I know that the last time she had the best hamburger EVER, was June 3rd, the last time Marissa laid in bed with her MoMo, was June 14, at the hospice house … The last time I helped her shower, was June 18th, The last time she smiled and joked with me was on June 18th, when I accidentally dropped my water bottle on her leg, and she said “Don’t worry, I have another one,” as she smiled and went to sleep, and that was the last thing she ever said to me … The last time I spoke to her was June 22, around 1:15pm, when I told her that I’d be right back, I just needed to text Stephen … I sent my brother a text at exactly 1:20, saying that it wasn’t a good day, and that if anyone up above, had any compassion for me, it would be today ..

She took her last breath at exactly 1:20 pm … as my sweet Morgan witnessed.

So, I guess my message to you all, is this … Remember the firsts, remember the middles, and please try to remember the lasts … Even though you don’t really know when they are happening, try to pay attention, and then they won’t be hard to forget. The big things, the little things … they are all amazing things, as long as you pay attention.

Take my arm … 

I lost my Mommy on Friday, June 22, 2018 @ 1:20pm … The last two months have been pretty hectic, as her decline in health started to progress quickly. It was a long road, but I’m still here … There were days that I wasn’t quite sure I would make it through, yet here I am …

I’m “re-sharing” this poem that I wrote for her last July, after having been rediagnosed with Vulvar Cancer.  I’m writing something special to share at her Memorial Service, at the end of July, but for now, I’m sharing this, once again.

It’s funny when you think, “How am I gonna get through this?!”, and then one year later, you look back and think … “Ahhhh, that’s how!!!” … It’s pretty remarkable!

via Take my arm … 

Holding On.

I have a child that has been driving for almost 2 years, a boy.  I also have another child with a permit, and will get a driver’s license in July, a girl.  She always wants to drive, and I get it … I was 16 once upon a time, too. She’s a very good driver … Actually, she’s such a good driver, that she “kindly” tells me how to drive, at times … yeah, it’s impressive! <insert heavy eye roll>.  

That being said, why do I have such a hard time handing her the keys, and just letting her drive?!  Things would be a lot less “yelly”, if I just gave her the keys, every single time we have a place to go, but I don’t … and if I’m being honest,  I won’t.  Because after a lot of soul-searching, I have come to the conclusion, that since I cannot control the hands of time, I can control whose hands the keys land in.  She has the rest of her life to drive, I only have three months left to be her chauffeur, before getting a car of her own, and ONLY a little over a year, before she graduates high school, and starts her own life.  I know it sounds dumb … I know she should be practicing … and she does, just not as much as she wants. Once she has a car of her own, and the “freedom” to come and go, I’m pretty sure she’ll go, more than she comes, and I’m okay with that, at that point in time. I am the person who likes to celebrate growth and milestones, and very much looks forward to a reason to celebrate my children. I try to not be overly sentimental, however, it’s a different set of emotions, that is so unexplainable to parents who haven’t been here yet.  Knowing that the time is coming for my older two children to spread their wings and fly, is a lot to handle.  As much as parents “look forward” to empty-nesting, it’s a wee bit scary for this mama. I feel secure in how we’ve raised our children, to be great products of society, but have I really done enough?!  Will my “life lessons” resonate with them … Will they remember my words when it’s time to make an important decision?!  

Oh my goodness … Have I done enough?!  

It’s a scary reality knowing that your kids will be on their own, making grown up decisions, making mistakes, hopefully learning from those mistakes, and growing from them.  My daughter has this false sense of reality, that as long as you’re doing the right thing, everything is peachy keen. In a sense, yes it could be, but you never know what bumps in the road could arise, what crazy forks in the road you will come in contact with, and have to make a decision … LEFT or RIGHT?!   Have I done enough, have I said enough, have I taught them enough?!

At the end of the day, and in my defense (wink wink) … I know she’ll be okay … I have been in the car with her enough, to know that she will be just fine.  She thinks she neeeeeds to practice, I know that even with all the practice in the world, it doesn’t stop all the assholes that ARE on the road, and as long as she’s paying attention and doing the right thing, she will be fine.

For now, I’m holding on to the little girl who never wanted to leave my side … the little girl who couldn’t let me leave the house without her being in tow … the little girl that I have a bond with that no one can touch … the little girl who used to sleep in my bed … the little girl who looked at her mama with those green eyes …


…  the little girl that I am just having a hard time, letting go!!

        The end.

 

 

Versatile Blogger Award!

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Congratulations to my lovely friend, Allane at https://allanesinclair.wordpress.com/  for receiving the Versatile Blogger Award!

Allane’s writing is most definitely versatile. Her writing is so raw and so real, and really makes you stop and think … To be nominated for this award by her, means more than the absolute world to me.  Allane, you give me more motivation (and giggles) than you are probably aware.  Thank you for always shouting your words of encouragement, my way!

So, the rules this time around are to write seven interesting things about yourself, then choose fifteen of your favorite bloggers to nominate. ((And I took out the ‘u’ in favourite, because I had to! hahaha!!)) ((PS … I don’t know that I know 15, as the ones that I do love, have already been nominated, but I’ll do my best to nominate people whom haven’t been nominated yet! We’ll see how that works out! ha!))

7 THINGS ABOUT ME,
THAT I’M SURE YOU NEEEEDED TO KNOW!

  1. I’m a morning TV junkie!  It’s seriously hard for me to start my day without my daily fix! #truestofstories
  2. I have been an excellent “speller” since 2nd grade, when I won the spelling bee with the word ELEVEN, which you would think would be favorite number, but it’s not, it’s 4, because I loved Lenny Dykstra (American baseball player) when I was younger.  ((Fun FACT: I’m also a speed reader. My senior year English teacher taught me how to do it, because I loved to read, but am ADHD … need I say more?!))
  3. I’ve been a GUEST on the Rachael Ray Show ((April 2016)).  My segment included Cameron Diaz … and I have the pics to prove it!!  Or, you can easily google it, as well! haha!
  4. I should have been a music producer … I have a wicked ear, and can tell if someone is gonna “make it”, or not.  I’m very good at picking the winner in all of the reality singing shows, very early on.  I love music, I love lyrics … I can carry a tune, and am a ROCKSTAR … in my car and my shower!!!  LMAO
  5. I was super shy as a kid … I opened up a bit in high school, but was still shy.  It took me turning 40 (maybe a little earlier), before I realized that I’m a funny bitch, and people need to hear what I have to say, and now you can’t shut me the F&*% up!!
  6. I am a beauty school drop out .. insert GREASE’s Beauty School Drop Out song … but go ahead and ask me why?! Ohhhhh … so glad you asked!!!  I dropped out HALF WAY THROUGH (seriously, all I had to do, was work on the floor, I had already learned everything), but the reason is … I’m NOT a caddy bitch (not alllll beauticians, but a lot), and couldn’t see myself hanging around with them for the rest of my life! lol Little did I know twenty something years ago … the limitless possibilities that came with that license!! I often think about going back to get my license, then reality clicks in … I’m OLD … my knees hurt, my wrists aren’t as agile as they once were, and my body just can’t STAND in one place for longer than 10 seconds! Soooooooo … probably not the job for me!
  7. I love tattoos, and have SIX of them, with a few more to come!!!

I’m breaking the rules, and am not nominating anyone … Not because I don’t feel people are worthy, but because the ones I would nominate, have already been, and because I have been through 2 Nor’Easter’s in less than a week, and am preparing for Nor’Easter number 3, on Monday.  I really just wanted to respond to MY nomination, because I have so much respect for Allane, and am truly honored that she thought of me!

Thank you so much, my like-minded, soul sister! It truly is a blessing, getting to know you!  Everyone, please check her out her shit (well, it’s not shit, as in bad shit … it’s shit, as in THE SHIT!)https://allanesinclair.wordpress.com/  I hope everyone has an amazing day, and takes the time to read about what Allane has to say … she’s pretty amazing!!

Unconventional ~ Part 3.

It’s the little things, that make a huge difference …

Sometimes you win, and sometimes you lose, right?! Right.  My “conventional marriage”, was finalized in divorce, at some point in Early 2004.  We brought another child into our marriage in July of 2001 … my only full-term baby (that’s right, in 2010, I had another premature child, 6 1/2 weeks early), and even she wanted to be born six weeks early, but doctors were able to stop my contractions .. with a little bed rest, I was able to hold her in until 39 weeks … July 2, 2001, it’s a girl … 6 pounds, 6 ounces, at 6 am … Hmmm … you said a girl, right?! Not the devil?! (Again, I joke … sorta)

My ex-husband started cheating on me in November of 2000 … That’s right … You do the math!  Yet, I still fought for what I thought was mine … I lost, but eventually, when I realized he got another person pregnant, I won.  I won my freedom from him, back … I no longer had feels for him the way a wife should have for her husband … Soooo …

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Photo creds: memecrunch.com

In January, 2003, I moved my children and I to Hickory, NC.  I was no longer a wife.  I had a new title:  Single mom … with nowhere to go.  My mom, and my brother lived there, so it made sense.  We spent about 6 years there.  I have nothing, but wonderful memories, and few close friends that will be cherished forever.  I do believe it was when my older two kids were happiest in life, if I’m being 1,000% honest with myself.  It’s also where, for four years, twice a year, my son was injected with botox injections, in both legs, and then casted (to stretch the tendons in his calves and ankles) for 6 weeks, each time.  Even though his cerebral palsy only affects the right side of his body, the doctors felt that doing it to both legs, at his age, would give him an “even” feeling.  Along with the botox, came extensive, intensive, physical and occupational therapies, 2 – 3 times per week, during these four years, and beyond. I could sit here and list the numerous procedures and therapies my son has had to endure, but I can’t remember them all.  There have literally been hundreds, and if anything, I’m under-estimating!

Single mom, 2 kids … my world … not such a bad title to hold.

I seem to have forgotten to mention what exactly caused my son to develop cerebral palsy (CP) … At birth, he suffered a Grade III, out of IV, bleed, on the left side of his brain, affecting the right side of his body.  In other words, he had a stroke. Given too much oxygen at birth?  Maybe.  However, for all the things that SHOULD be wrong with him, he is truly blessed, and a FUCKING MIRACLE!!  Through the years, I have seen many kids born at 26, 27, 32 weeks.  I have also seen many born at full term, with cerebral palsy, requiring a wheelchair, having no speech or any motor skills … I KNOW HOW LUCKY WE ARE!!! It’s trying to teach a kid with a severe disability, just HOW LUCKY HE IS!!  Even though I have ingrained, in my son’s brain, that CAN’T isn’t in his vocabulary, I still struggle with showing him that he fucking CAN!!

He can do anything he wants in life … He may have to work a little harder, but he FUCKING CAN! (He’s almost 19, so I don’t feel bad swearing at this point).

In 2008, I decided that my ex-husband needed to be in our kids lives more.  So what does every sane, normal person do?! Oh … I upped, and moved back home to New Jersey, in August.  This whole section of life, is a whole other blog! wink wink!

August 2009 … Children’s Hospital Of Philadelphia (aka CHOP) … 

My son had some testing done at CHOP, to decipher exactly what could be done, surgically, to help aid him in his growing years.  You see, it was these tests that clued us in that his right hip was growing in, instead of straight, causing his right leg to be extra tight, shorter than his left leg, and caused him to tippy toe his right foot for many years, walking with an EXTREME limp.  What brought me to this point, as his mother?

                                               Mean people! Cruel fucking humans.

Earlier that year, in the Spring, my son wanted to play baseball … a great little athlete, he was (is) … even with his “gimpy limp”.  He had (has) an arm on him, like you wouldn’t believe.  It’s a damn shame that some people have to be complete, fucking assholes their whole life, and a mother, at that.  Being that we were new in town … No one knew that I was his mom.  I was so proud of my kid for joining a team, where he hardly knew anyone.  The kids were pretty accepting of him … 3rd graders are still sweet!  The first time my son was up to bat, he hit the ball … AWESOME! … and as he ran to first base … Cheering him on, I overheard another mom question who my son was … (in my best snotty voice) “Whoooo is that kid?! Isn’t he considered a liability?!”.

kevinhart

NOW, in my best Mama Bear voice, “I’m sorry … WHAT?! BITCH! … THAT is MY kid … He is NOT a liability … he is a fucking miracle, with a heart of gold, and a smile that would melt your cold ass heart!  He has cerebral palsy, and has EVERY right to be here, just as much as your perfect little liability, er … son does!”.  ((GTFOH!!))

Can you believe the audacity of some people?!

September 21, 2009 … Morristown Memorial Hospital … Surgery Day!

 

Seany10
Seany, pre-op!

Look at that sweet, sweet face!  How could you not fall in love with this kid?! His big brown eyes, super long eyelashes, and a smile that just makes everything okay in the world!  Side note: I love his smile so much!!

THIS … was the scariest day of my life.  My baby boy was about to endure EIGHT procedures, in EIGHT hours, and while my memory fails me to know the exact terms of each procedure, I can give you the synopsis … Basically, the doctors had to break his hip, rotate it out, put a temporary plate in (which was removed a year later, during another surgery), while it fuses back together, along with lengthening his groin muscle, heel-cord surgery, stunting the growth in his left leg, so his right leg can play catch-up (those tools were called 8 plates, and they too, were also removed, in a separate procedure, once his left leg caught up, about 2 years later) … that’s five … the other three things were minimal.  He was supposed to come out of surgery in a body cast, for 6 weeks.  It was a last-minute decision, by the orthopedic doctor, to NOT cast his body … Because he knew my son, and he knew it would only hinder his recovery … and he was CORRECT!!

Seany7
Sean, about two hours after surgery.

Again … Look at that face … all drugged up, and still has a smile for his mama! GOD, I LOVE THIS KID! So, now that we have gotten through the surgical aspect, now starts the long road to recovery … A full year recovery, and then some.  He had to learn how to walk again.  “It’ll be a good 12 weeks, before he’s ready to start to walk,” Dr. Rieger said, “However, I decided to not body cast him, in hopes that he may walk sooner.”

And that he did!  He walked 6 weeks before he was even supposed to start trying! “YOU ARE FREAKING AMAZING!”, I would tell him time and time again.  “There isn’t anything, YOU CAN’T DO!”, would roll off my tongue, over and over.  We went through a full year of physical therapy, and unless you knew he had CP, you would never know it.  Mission accomplished!

Fast forward to sixth grade … Ahhhhh Middle School!!  Difficult transitions to get used to.  You’re expected to do more for yourself in school, change classes, etc.  When Sean started middle school, we lived in a neighboring town, to where we live now.  After the first marking period, his teachers were all telling me that he needed extra help, or maybe he was a resource kid … a kid who needed help in every aspect of school.

WHAT are you people telling me?!  I have NEVER had a problem with his schooling, except in 4th grade, but that’s when he had his big surgery, and got a little behind.  He was totally fine in 5th grade, when his lowest grade was ONE C, the whole year?! I literally left there in TEARS!! Who the hell wants to hear that their kid is resource material?! NO ONE, but here we were!  Because of his cerebral palsy, he was always being tested, and was always “over testing”.  They could never find any learning disabilities … EVER!

Other circumstances in my life, caused us to move from that town, to the one I live in now, allowing my son to change schools in the middle of 6th grade.  He did okay that year.  Seventh grade, we struggled with some bullying and grades … Of course, I thought it was the bullying that was causing his struggle with academics.  WRONG! In 8th grade, yes EIGHTH grade … it was his Math teacher, who finally “heard” what he was trying to say. Long story, short, it was found that he had a terrible processing speed.  So things that should normally take you a few seconds to answer, would take him a minute or two … or longer … therefore resulting in a documented learning disability.  The poor kid was struggling for years, but didn’t manifest, until he had to do things for himself … such as MIDDLE SCHOOL!!  I felt like the worst parent ever … for pushing him so hard to do better.  His step-father and I really didn’t accept anything, but his best!!  To our credit, every teacher, and counselor has told us that if it weren’t for our “push”, he wouldn’t be where he was at that point.

The very first day of 8th grade, he had broken his “bad” leg, in two places, from a little spill on his dirt bike … Here we go again … Getting behind in school, and MONTHS of physical therapy.  I remember when Erica, his therapist, asked me what my goal was for him … without hesitation, I said, “I would like to see him run … properly.”

It’s the little things in life, that people without any type of disability take for granted.  I had never seen my son run with both arms at his side, pumping back and forth. Instead, the left side worked “properly”, while his right side flailed in the wind.  Although cute, he was about to enter the next four years of his life, in high school …

It’s the little things, that make a huge difference, and the day came …

December 18, 2013 … Drayer Physical Therapy, Sparta, NJ

I saw my son run, like a person without CP, for the first time in his life … LIKE A BOSS!

Tears roll down my face, and I’m reminded, we’ve already come so far.

 

 

 

 

Unconventional ~ Part 2.

I heard the sweetest little “Wahh!” …

April 24, 1999 … 7:15 am … Trying to place an epidural, in a spine, on a body that has gained over twenty pounds of water weight in less than three weeks, is proving to be near impossible.  I was “stuck” in the back about five or six times, before the anesthesiologist said,

“If I can’t get it this time, we’re gonna have to put you under, and do the c-section while you sleep.”

BLOG_Unconventional2
Photo creds: Memegenerator.com

“Ummm … there is a chance that my son won’t live … You WILL get it this time, because I want to see him alive, even if only for a minute!” (Wow! Look at me! Haven’t even met my son, and I’m already a Mama Bear!) With that, the epidural was inserted properly, and within minutes, the doctor who delivered my son, Dr. Yvonne Thornton, entered the room, and said …

“Now, please remember, that his lungs are just now developing. You will probably not hear him cry, when he is born.  This is normal.  We were only able to give you one steroid shot to help his lungs, versus the two shots, that you would normally get.  We are running out of time … for you, but I assure you (in her most sympathetic voice), even though you probably won’t hear him cry, technology has come so far …”

She continued on, but that’s all I really heard …  Technology?! WTF does technology have to do with MY SON, and his premature lungs … Actually, I remember a nurse saying that he was so early, that it wasn’t even considered premature, but rather … immature.  HA! A title he still holds dearly, to this day!!  (I joke … sorta)

April 24, 1999 … 8:54 am … I heard the sweetest little “Wahh!”, that I have ever heard in my entire life!  “It’s a boy … One pound, nine ounces, 12 1/2 inches long, apparently with a better set of lungs, than we anticipated!”

I will never forget that sound.  I have it on lock down in the memory banks of my heart, and my brain … I will never forget his first, tiniest of whimpers, and the thoughts that scattered through my brain …

That’s my boy!
Stronger than even the doctors thought!
A fighter from birth.
Strength you didn’t know you had.
YOU HAVE PURPOSE!
You got this, kiddo!
I will never leave your side … EVER!
THAT, is my promise to you.

 July 30th, 2000 ~ One year “corrected” age ~ When you have a child that is born three months early, you learn a lot of new jargon that you’ve never heard before. You also become super acclimated to the NICU, and you start to believe that you could be a nurse, with all that you have learned.  Especially when your child is there for 12 weeks.  Today’s word is “corrected age”.  He’s 9 months old, 6 months, corrected age. For ONE YEAR, and three months, I had to use this term.  It was frustrating.  Unless you know, you DON’T know.  To the mom who has her babies when they’re supposed to be born, it may sound silly to you, that I complain about this … It seems minimal, in the grand scheme of life, however … it’s ANNOYING … just another way to point out that my kid is different from yours … like I said … ANNOYING, and perhaps, dare I say “judgey”?! The only positive, is that if someone overheard me saying “corrected age”, it brought on the conversation, and I was happy to talk about it.  Knowledge is power, right?!  Getting back to my point … In August of 2000, I had to bring my son for a developmental check up.  I had noticed that he was favoring one side of his body, over the other.  When he crawled, at nine months, he would over use his left side, like an army crawl, but the left side did the majority of the work.  After a three-hour evaluation, the results were in …

“Your son has a condition called Hemiparesis, which affects his right side.”

In layman’s terms please …

“Your son has Cerebral Palsy.”

 

 

 

 

 

 

Intermittent Bullshit

A beautiful piece, by a beautiful writer!

courtship5

You were goddamned gorgeous, and a fucking conundrum, my mother. When I think of all the men in your life who’d tried to solve your riddles, I laugh. The relics of those men inhabit a corner in the catacombs of my heart. I don’t want them, but each one retains a precious part of you, so there they shall remain. Yes, I’ll keep those tokens to remind me that I never want to be like you—insecure.

You’d always believed you required a man’s love in order to be completely happy. From the depths of my being, I am so sorry you’d lived your life on the cusp of a chasm so black. I wish you had known your true self through the eyes of your daughters; and I don’t understand why Tara and I weren’t reasons enough for you to be content.

I’m angry tonight—angry about your failures as…

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