Bigger Conversations and Decisions

My daughter and I have been having a series difficult conversations.

Most parents have difficult conversations with their teens.  Yes.  I am talking about those uncomfortable, but necessary talks about sex, drinking vaping, drugs, driving, money,  college prep and our hopes for their future.

Our conversations are similar, but different. And some are not the typical conversations that most parents have with their children.

Driving – Naturally, my daughter was excited about getting her driver’s permit and was eager to sign up for driver’s ed with her friends.  She was looking forward to the laughs, bonding and learning how to drive with her friends. But her joy quickly changed to hurt and then anger when she and I spoke about the dangers of driving with her condition.

The pain she experiences from her condition affects her right leg.  If she is having a painful day, she may not be able apply proper pressure on the brake.  She could possibly endanger herself and others.  She will likely need adaptive driving equipment, such as hand controls for the accelerator or braking systems. She will need to learn how to properly use the equipment from a certified adaptive driving instructor (that person needs to have 2 certifications, one certification to drive an adapted vehicle, and the other to be certified to teach using adaptive equipment) .  The driver’s ed program in our district does not have certified adaptive driving instructors to provide driver’s education with adaptive driving equipment.  This conversation left us both sad, frustrated and in tears.  Once again, she is being robbed.  She is missing out on the experience of enjoying a right of passage with her friends.

Sports – My daughter loves her sports. She had to give up playing traditional stand up sports. We were lucky enough to have friends who introduced us to adaptive sports.

Adaptive sports, also called disabled sports or parasports, are sports played by people with a disability, including physical and intellectual disabilities. Many adaptive sports are based on existing able bodied sports, and are modified to meet the needs of persons with a disability.

My girl was able to get her adrenaline rush and keep her competitive juices flowing.  But these last 2 seasons were painful seasons. She was not able to participate due to being in too much pain.

She and I, very reluctantly, contacted the manager of the team and sadly withdrew her from the team. It was another heartbreaking moment for the both of us. I love to see the look of determination when she is competing. It never lets me forget how strong of a fighter, woman and person she is. I love the friends we have made with other families who participate in these sports. My daughter does not want to give up playing sports, but the pain she endures is too great.  Yet again she is forced to give up doing what she loves because her body cannot keep up with the demands.

Drugs (sort of) – For over a year now she has been taking medications that do terrible things when you don’t take them religiously.  She has learned the how horrible and painful the effects can be on her body if she forgets to take her medication.  So this is one of those times where, as a parent, am a pill pusher. And I have found myself in a situation where I have (surprisingly) strong opinions about the benefits of medical marijuana.

On the topic of drugs, I re-opened the discussion about the conversation I had with her surgeon.  My daughter has not been completely in the dark about her condition.  We have had ongoing conversations about FAVA (fiber adipose vascular anomaly) since her surgeon first told us about it last year.

We Googled our asses off and tried to learn about it, but since FAVA is so rare, and since it is a fairly, newly discovered diagnosis, the information is sparse, especially when you don’t have a medical degree.

She knows that her condition is rare and that there are limited treatment options.  She also knows that pain is, and will continue to be her constant companion.  So she was not surprised to terribly upset when I related my conversation with her surgeon.  Was she disappointed? For sure.

Her future – My warrior is very optimistic!  She is sure that modern medicine will continue to evolve and someone, out there, will come up with something to help treat this condition. And she is considering pursuing an occupation in the sciences to help further the development of new treatments.

I too want a treatment found. I will keep knocking on doors and I will never stop trying to help her.  But my mommy heart and brain worry about the process it takes to find the golden ticket.

There will be clinical trial studies; and placebo test groups; and success stories and less than success stories.  And while we will celebrate the success stories, there will be many more stories of cases where symptoms get worse after treatment.  And my heart goes out to those brave individuals who will be willing to take the risk, in the name of science, in the name of hoping to help others.  I pray for many more successes than failures.

 

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Big Conversations in a Small Room

It was a Friday morning, 7 years ago.

We were nervously sitting in a tiny exam room waiting for her doctor to come in.

She was 9 years old.

Her first surgery was 18 months earlier.

I don’t know what I was thinking. I think that I lacked the capacity to think. I was naive and, I will use the word arrogant. … I thought that the previous surgery was all that she would have needed to treat her vascular anomaly. Even though I was concerned about the “bruising”, since it was in a different part of her leg, I think I thought that it was not the same as before.

Her surgeon came in and examined her. I explained that her pain (in a new part of her leg) is what prompted me to make the appointment. In a casual and calm manner, the doctor affirmed that she needed surgery and that we should schedule it for Monday morning.

It was Friday…and she needed surgery the next business day, Monday. I left like I just filled out a UPS or FedEx delivery slip. I agreed to a guaranteed delivery of my daughter by the next business day.

I recall my daughter and I being so stunned and caught off guard at how the conversation had escalated so quickly.

As I was helping her get dressed, in her small voice I heard her say, “Wow! Such big decisions are made in this tiny room.”

Here I was, 7 years and 16 surgical procedures later, speaking with the same surgeon in the same tiny exam room. This time my daughter was not with me. I felt that I needed to protect her from this particular conversation. I knew that I was about to ask some really hard questions. The kind of questions that would lead to difficult answers that neither she or I were ready to hear.

Some may agree or disagree.

Yes it’s her body.

Yes it’s her treatment plan.

And I know that one day I will not be there to buffer her difficult conversations with her doctors. But for today, I felt that I needed to process whatever her surgeon would say before I overwhelm her.

In hindsight, I really feel that I did the right thing.

After giving her surgeon an update on how she was managing with the pain, at school and in her social life, my mouth opened uncontrollably and the questions came out in rapid succession.

“What is your end game?

What is your discharge plan?

As my daughter’s surgeon, I am asking you what can be done to help with her pain? Because when you tell me that you cannot do anymore surgery, my brain and heart hear something different.

My heart and brain hears you saying that you are done treating her. All I hear is that she will continue to live a life of pain, with no treatment or remedy in sight. Is this it?

He looked to the floor with his sad eyes and said that really there is nothing more that can be done. Not by him, not by anybody. He said that the only thing we can do is wait and hope that someone, in the near future will come up with something to help those with this condition.

Once again, I found myself stunned at how the conversation had escalated so quickly.

I think that both the doctor and I left that room just as disappointed, sad and scared as my daughter did 7 years earlier.

On my drive home I agonized over how I would find the right words to tell her as her words, from all those years ago,

weighed heavily in my heart.

Big words – small room.

What do you do when the doctor says no more treatment; just sit back and wait and hope for a better answer?!?!?!?

Meanwhile, I am sitting back and watching my daughter live in pain….

#devastated #holdingontohope #fava #fibroadiposevascularanomaly #vascularanomaly #chronicpain

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

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!

IMG_1356

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!