Repost: World Prematurity Day

Spoiler Alert: this is not your typical celebratory post.

Here we are “celebrating” World Prematurity Day.  Another year of knowing how blessed our family is, in that our twins who were born 9 weeks early twins are now high school honor students.  We recognize and are grateful that they

  1. survived being born too soon
  2. met their milestones and
  3. are thriving.

For all that we are thankful for, the experience of giving birth to premature babies robbed me of so many moments of joy.  Despite missing out on the joys of pregnancy,  I remained steadfast and focused on willing them to survive, willing my body to stay pregnant one more day.  I did not dwell on all the missed special moments that all pregnant women dream about, long for, and often have the opportunity to experience.

My body rejected the pregnancy from day one.  I spent the greater part of my short pregnancy in bed.  I was put on bedrest at 19 weeks (after emergency surgery to sew up my cervix).  Then I spent the last 7 weeks (24 – 31 weeks) of the pregnancy in the peri-natal ward of not one, but TWO hospitals.  But I embraced each and every day during that time as it was my last.  Every day those babies stayed in me, was 3 days less time they would spend in the NICU.  I worked really hard to stay pregnant.

I was denied the joy and humiliation of buying maternity clothes; wearing a silly hat made of bows and streamers from all the presents at my own baby shower; picking out nursery decor and baby linens; nesting and fussing over decorating the nursery; sending hubby out at 2am to satisfy some outrageous craving.  All of that was robbed from me.  But I didn’t care, none of it mattered.  It still doesn’t.  All that mattered was that I would look forward to hearing my babies heartbeats almost every other day.  The frequent monitoring of the babies was the one thing I looked forward to.  That was all that mattered.

Their emergency delivery robbed me the opportunity to bond with them.  They were cut from my womb, shown to me from across the room and quickly whisked down the hall and placed on lifesaving machines and monitors.  There was no time for the quintessential placing my newborns on my chest and feeling the warmth of their tiny bodies against my skin; there was no feeling their tiny hearts beat against mine; there was not time to count fingers and toes; no time to discover birthmarks; no time to marvel if they looked more like mommy or daddy.  All of that was robbed from us.

I was gutted, left with a literal hole in my womb.  And in my heart.  I felt empty.

The only thing that we had time for was for the doctors to insert needles and tubes into their tiny, frail little bodies to make sure they would have many more important moments in their lives – such as taking their next breath.

*  *  *  *  *  *  *  *  *  *

All these years later and I am still, not doing a good job at accepting that my children will never outgrow the effects of being born prematurely.

The beast of premature births needs to be stopped!  It steals, it robs, it turns your world upside down.  And, in my case, each passing year, as my children are diagnosed with something new, it is a constant reminder that my children are the ones who are being robbed, and their world is being turned upside down.  All because they were born too soon.

This past year has been a year filled with new diagnoses added to our already complex medical history.  This past week we were at yet, another appointment with another new specialist.  And she said 8 words that hit me so hard, that I almost started to cry.  She was talking about my daughter’s new health crisis and said “this is a byproduct of being a preemie”.  I haven’t heard those words said to me in a long time, and having my teenager being called a preemie stung.  I felt offended.  There was no mal-intent in her tone or in the manner in which she spoke, but I took it as a personal affront.  I felt like the doctor defamed my family, as if the word “preemie” was an angry, hateful slur.  I have been trying to hard so get my kiddos to be and stay “mainstream”, “stay on track”,  be like all the other kids their age, and keep up with them.  I have been trying too hard to ignore the fact that they will always have medical issues that they will never outgrow because they were born too soon.

So, no.  I am not happy about “celebrating” World Prematurity Day.  It needs to go away.  I do not need to be reminded about the awfulness and trauma of giving birth to premature  babies.  We are reminded of their premature birth every time they get sick.

I don’t know how to express how much it sucks to be a preemie parent, but it sucks 1 million times more to be a teen who lives and wrestles with the consequence of being born prematurely.

We have to find a way to prevent premature births so babies can grow healthy and strong.

#WorldPrematurityDay

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How rare is rare? Fibro-Adipose Vascular Anomaly – FAVA

FUN FACT:

World Population: 7.7 billion people

KlippelTrenaunay Syndrome (KTS) is estimated to affect at least 1 in 100,000 people worldwide. Approximately 70,000 people are affected by KTS.  (Credit: https://ghr.nlm.nih.gov/condition/klippel-trenaunay-syndrome)

I have been told that less than 1% of the KTS population may also be diagnosed with FAVA.

Less than 700 people, worldwide, have been diagnosed with FAVA.  My daughter represents that less than 1% population.

What is FAVA?

Fibro-Adipose Vascular Anomaly (FAVA) is a rare, but painful, vascular anomaly in which a significant portion of a muscle in one of a child’s limbs is taken over by tough, fibrous, fatty tissue. In addition to muscle tissue changes, FAVA can also cause abnormalities in the veins or lymphatic vessels. It has only been recognized as a distinct kind of vascular anomaly within the last couple of years.

(Credit: http://www.childrenshospital.org/conditions-and-treatments/conditions/f/fibro-adipose-vascular-anomaly)

So this begs the question – how much research is being poured into the condition?

What I do know:

  • I know that Boston Children’s Hospital is actively trying to come up with treatment options.
  • I know that any other website that tries to explain FAVA references back to Boston being the first to ‘discover’ FAVA.
  • I know that my heart broke and I had to choke back tears when I read the second adjective of the first line on the Boston website: “FAVA is a rare, but painful, vascular anomaly….”
  • I know that my daughter is in pain. Every day. No matter what.
  • I now know why all those other procedures didn’t work.
  • I know that due to this condition, any malformed veins that are ‘treated with sclerotherapy’, ‘killed off’, ’embolized”, will undergo neovascularization.  The human body is designed to replace damaged cells.  So neovascularization will re-grow new veins, but they will be malformed veins.  And they will return aggressively and with a vengeance.
  • I know that I am exhausting every avenue to help my child.
  • I know my child is exhausted from being in pain.

 

  • I know my daughter is STRONG.  She is FIERCE.  She is TOUGH. She is the reason why I will never lose hope or give up.

This is all I know.

 

Self-Advocating Against Bullying

The bus got home before I did, but the kids were really surprised to see me home so early.

I asked my daughter if she wanted to talk about what happened and she was more than willing to share her experience with me.

It started after she explained to the gym teacher that she would not be able to participate in gym due to her leg hurting.  New school year, new gym teacher, damn it to hell, I forgot to email this gym teacher about my daughters accommodations and medical condition.  At least, instead of sending her to the library to write a summary of an article about a sports figure (story for another day) the gym teacher told my daughter she could remain in the gym and be a score keeper.

Halfway through the class, one student loudly asked “Why isn’t she (referring to my daughter) playing with us? What is she? Disabled?” That stung my daughter, but she’s got thick skin.  She’s endured years of rude and ignorant comments and ogling stares from friends, strangers and even family members. So she chucked it off as just another dumbass.

But then, (you know there is going to be a but then), moments later, a second student passed her (while still in the gym) and said “Hi disabled girl.”  Then she lapped around again “Hi disabled person.”  And then again “Why do you always have a broken leg?”  And again.

My daughter tried to retort with witty responses, but it was pointless.  She felt humiliated.  Thankfully the period ended and she shuffled off to lunch where another minor (unrelated), but upsetting incident occurred.  At this point she admitted that she was ready to burst into tears.  She had to do something.  She tried to text me, but she could tell from my reply that I was busy.

[ I cannot tell you how devastated I am that I was ‘too busy with work’ to be there for my child.  #momguilt #workingmomguilt #worstmomever #bullyingmyself]

She gave herself a few minutes to compose herself and marched her self-advocating, “I won’t be a victim” self to guidance.

After getting all the details, I envisioned myself going to school, finding these students and re-enacting a scene from The Hand that Rocks the Cradle with Rebecca DeMornay when she threatens to rip Roth’s (the school bully) head off if he ever bothers sweet little Emma again.  Yeah, I could totally pull a Peyton!

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WARNING – RANT:

While that is notable that the guidance counselor switched her gym class, I do take issue with this ‘remedy’.  We are removing my child from her class – this can be perceived as protecting the child, or as casting her away so others won’t be disturbed by her ‘disability’; or worse yet, teaching her to run away from a problem.  However, I will not make an issue of this today because the new gym class is with the gym teacher she had last year who understands her condition and abilities. The big plus is that she already has friends in that class so she will be more comfortable.

End of rant.

Today My Child was Mocked and Called Disabled

My heart today.  It hurt bad, but not as bad as my daughter’s.

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I was at work and was in the middle of introducing my company’s employee handbook to a new employee when I received the text above.  Moments earlier, I had just reviewed our company’s strict electronic device policy; hence why my daughter received my short reply “Let’s talk later”.

I figured I would text her back once I got back into my office.   Forty-Seven minutes later my phone rang and the school’s number displayed.  I casually thought to myself that it would be my daughter’s school guidance counselor asking my permission to change her gym class.  The conversation was not at all what I had expected.

The guidance counselor began with a gush of apologies and a promise that she would gather more information. Looking back, she must’ve thought that I already knew.

She said that while at gym class, two other students called my daughter disabled. Repeatedly.  Mockingly.  The guidance counselor (GC) did not get into too much detail other than my daughter was subjected to this despicable treatment and there would be consequences after an investigation…statements from witnesses, blah, blah, blah.  All I could think was ‘Great, on top of the humiliation, there were also other witnesses to this humiliation my daughter just experienced.’  The GC was proud of my daughter for going to guidance with this issue rather than keeping quiet about it or taking matters into her own hands.  The GC will oblige my daughter’s request to change her gym class.  Blah, blah, blah.

One thing the GC did say that I felt was empowering was that she reminded my daughter that having a disability does not make her disabled.  Now if we could only teach that to the rest of the world!

My mind was swirling. Oh my poor girl!  She had to endure being called disabled by two students. All because she sat out of gym because her leg, affected by Klippel-Trenaunay Syndrome, was hurting her and gym participation was not in the cards for her.  And two students thought it was ok to call her disabled. While I was listening (because I was speechless) to the GC rattle on, I texted my daughter “Who are these two little bitches?”  I got no reply.

I was in autopilot.  I said “Yes, Umhum, Okay, I see, and Thank You” to the GC.  I heard her promises of getting to the bottom of it. I was absorbing but not yet processing or thinking.

After taking care of some other business at work, I went to my car and sat for a long while and stared at my phone.  Why wasn’t my daughter answering me?  Why didn’t she text me that she was being bullied?  So many questions….

I called the GC back and admitted that I was yes-sing her to death when she first called.  I was absorbing info.  Now that I had time to process, I had questions.

  1. Where the f&*% was the gym teacher?
  2. What role did the gym teacher play prior to the bullying from the other students?
  3. Why would my daughter text me that the teacher was mean?

The GC had no answers because she had yet to speak with the gym teacher.

I shared with the GC that while I am very proud of my daughter for advocating for herself and going straight to guidance about this very serious matter, I am concerned at how upset she must’ve been to summon the courage to go to her office.  My daughter must have been really pissed off to go tell the GC about what happened before telling me.  I cannot express how proud I am of her, but at the same time, it pains me that the level of pain she was experiencing was the motivating factor behind her “courage.”

I went back into work, cleared my desk, packed up my stuff and tried to beat the school bus.  I wanted to be home before she was.

Mom’s Back to School Anxiety Checklist

  • Forms…too many to keep track of
  • Doctor notes…..
  • Medication forms…..
  • 504 meetings….
  • Emails to teachers, guidance counselors, school psychologist, principal…the Pope…
  • Follow up doctor appointments because they haven’t seen your kid in 3 months and cannot fill out the medical forms without seeing them first.

*Keep kids calm.*

  • Schedule a celebratory luncheon with other moms (that’ll never take place) to celebrate surviving “2018 — The Summer of Fortnite”.

In my opinion, Back to School Day should be celebrated, treated and accepted as a holiday. And a paid day off from work!

Teenage Back to School Anxiety for My Teens with Medical Conditions

Ah. It’s back to school season. Tis the season that heralds anxiousness in all its glory for most teenagers.

The first day of school is right around the corner and anxiety levels are starting to ramp up in my house as the twins start their 2nd year of high school.

Traditional back to school worries include the very dramatic:

  • Not one of my friends are in any of my classes!!
  • Or finding out that the teacher of your favorite subject is the equivalent of the dark and sinister Professor Severus Snape from Harry Potter. Or perhaps Voldemort himself, or his just as evil twin sister.
  • Or seeing that the school has assigned you to the same math class twice, no lunch and a regular core class instead of the Advanced Placement class you’ve worked hard so for.

We are currently “stressing out” because some of the teachers have yet to post their supply list. Really guys? We’ve been at this for 11 years. All we need are the basics: binders, pens, paper, vodka, folders, calculators, tequila, index cards, staples…..

What??? Don’t judge. Moms need supplies too.

Amid all the excitement and hubbub of how many classes the twins will be in together (none, if I had my way); or how one of my son’s friends will have a total of 5 classes with one or both twins. The subject of Physical Education class came up. I heard the inevitable sigh of exasperation in my daughters exhalation.

I instantly knew what she was going to say before the words fell from her lips.

My heart sank.

“Oh great. We have a new P.E. teacher. This means I have to explain everything all over again.” And then came the solemn look in her eyes. “And now I have none of my friends in my class to help me get around. What if I need to use my wheelchair?? Or worse, my crutches (oh those dreaded crutches)!! There is no one who will open the classroom doors, help me with my backpack. And the teachers are going to make a big deal about fitting my wheelchair into their classroom. And now I have to deal with the stares from new people, and I will have to explain everything all over again. Can you try to not schedule so many appointments during school hours? I miss too much school. And then everyone asks why did you leaving school early. And then I have to explain. Aaarrrgggg.”

In an effort to try to calm his sister’s nerves “Well, I thought you said you’d never use the wheelchair in school again anyway. You said you’d rather stay home in pain than go to school in the wheelchair. So why are you complaining?”

But she was not having it from him. “Because….the teachers are going to read the 504 and start asking questions and I hate talking about it.”

Of course my Mr. Denial announces: “504’s are stupid. I don’t see why we need them anyway. We know what to do for ourselves. Mom and the teachers make such a big deal out of them. They are so annoying”.

Now I’m offended: “Hey! What’s so annoying about 504’s?

Soon to be grounded twin son: “You are. Ummmm, I mean all of it: the accommodations I don’t need: the extra attention I don’t need, or want: the big deal everybody makes about it. It’s all stupid and annoying. Why can’t you just remove it?”

For the win, by the twin girl: “No! Don’t take it away!! Just because you don’t use your hearing aid the way you are supposed to doesn’t mean we don’t need it. I need it! You need it. You are so annoying.”

Soooo close to being grounded twin boy: “No we don’t. We can get through school day without it. Nobody understands our conditions anyway. Nobody listens. It’s just all a stupid waste of time.”

I assured my guys that I will email their teachers before school starts and ask the teachers to direct their questions about their conditions to me or to request a private meeting with the school nurse and guidance counselor. And I doubly assured them that we will not be removing any classroom accommodations despite how unnecessary they think they might be.

After some grumbling as we niches in cookies, I heard my twin boy who didn’t get grounded mutter: “I just hope my lungs don’t get sick again. I don’t want to end up missing half the hockey season again.”

So this is what back to school anxiety looks like in my house…here’s to a new school year! Now, if I can only remember where I put that bottle of vodka….

#backtoschool #klippeltrenaunay #hearingloss #hearingaid #schoolaccommodations #chronicpain #sensorineuralhearingloss #tinnitusinchildren #tinnintusinteens #

Tiny Miracle? Hoping the Other Shoe Doesn’t Fall.

For many months I have agonized over the decision to allow my daughter to try a controversial drug to help her manage the pain in her KT leg.

We were told that it would take time to see results.  Typically, most patients feel relief 4-6 weeks after starting the medication. We were told that this is not a miracle drug.  They weren’t even sure if she was receiving the correct dosage; or if the medication would even be effective at all.

We were very skeptical about this new and expensive (as it is not covered by insurance)  journey, but we felt we needed to try.  We have (unsuccessfully) tried everything else to manage her pain.  We have tried other interventions, medications, surgical procedures, reiki, physical therapy, etc. All to no avail.  I often wonder if some of these other interventions caused more harm than good. In some instances I rejected certain proposed interventions, such as low dose chemotherapy.

Currently are just under 2 weeks into taking the new medication.  Words cannot express how I feel about how this drug is changing my daughter’s life, for the better.

FEAR – fear is the first emotion I am experiencing.  I know, weird, right?

Let me explain. I am fearful that the medication will stop working.  I am fearful that she is enjoying her new-found freedom just a little too much and may be pushing herself too hard to have fun. I am scared she may crash and burn.

But, OH MY JOY! <– look! A good emotion!

HAPPINESS for her, my heart and my ears:

  • “WOW! Mom, I was actually running today. With my friends!  It felt so good to not have to walk, or have my friends wait for me to catch up to them. “
  • “Now I can have FUN!”
  • I asked her why was she limping “Because my whole body hurts from running yesterday.  It’s not just my usual leg pain this time.  But its okay, it feels so good because I am using muscles I haven’t been able to use in a long time.”
  • “I mean, my leg hurts a little, but Mom, just a little.  If I tried to do all this running around last month, I would be dying of pain.  But look, yes, I mean, it is swollen, but it doesn’t hurt as much as it usually does.”
  • “I can’t believe I did all this running and the pain isn’t that bad.  I mean, most days I wake up with this kind of pain and my day just gets worse.  But now I know what it is supposed to feel like to wake up with no pain.”
  • “I can feel how out of shape I have become because everything hurts, but now my body is working again!”
  • “It’s miracle that I can do these things again!

Anyone living with Klippel-Trenaunay Syndrome, or with any form of chronic pain can attest that on most days, a few hours of fun usually results in days of pain and eventual recovery.  It seems that there is always a heavy (painful) price to pay whenever she seems to have fun.  My child has been experiencing that horribleness. But this new medication seems to be turning the tide for her and offering new hope.

I am trying to let go of the fear of the other shoe falling.

I need to embrace this moment in her life.  Her moment of pain-free joy.  I love the smile on her face.  I love watching her flex her new-found muscles, and freedom.  I love my happy (and for the moment, pain-free) girl.

I pray that this wonder drug will continue to help improve the quality of her life.