Category Archives: parenting

My DIY guide

Leave a reply

I am not a do-it-yourself type of gal. I semi-joke that is why I am married: I don’t have to kill bugs and I don’t have to do projects around the house. The bloom fell off that rose very quickly and I now kill bugs. However I have successfully managed to avoid any home projects since the time I picked up a power drill and missed the wall…


One of my few skills, though, is hosting Ladies Night In. A night where there are just three rules:

1. Everyone bring something to drink
2. Everyone bring something to eat
3. Everyone leave their husbands at home (kids, though, are welcome)

As I, ahem, get older I am learning to value my friends more. I need them to be a part of my life more than I need that treasured M&M. With Boo it is impossible for me to be as there for them as they are for me. Ladies Night In solves that. It keeps us close, keeps it low-key (and cost!) and allows me to catch up with those whom I enjoy.

Total Ladies: 23
Total Children: 12
Total Cost: Not important (but for me, less than $15)
First guest arrived: 5:30 pm
Last guest standing: 11:45 pm

The DIY trick is to mix it up. Stop yourself from just inviting a core group of friends. This weekend we mixed it with Boo’s therapy team, friends from high school, friends from the neighborhood, PTA, friends from the therapy waiting room, etc…not everyone knew one another. The stories were, for sure rehashed, but re-enjoyed as we laughed and got to know one another. By the end of the night people who had never met were sharing parent survival tips, workplace stories and sangria. By the way, the sangria was fabulous!

The kids? Heck they had a blast. The only rule for them was no food in the bedrooms and no kids inside the fire pit. Yeah, that sounds like a no-brainer but these are kids I am talking about. You know what? Not one kid fought. I don’t even think one child came and told on another child for a perceived wrong-doing. Every child from 4 to 12 got along and played. The ladies were having so much fun, we kind of (but not really) forgot the kids were there. 

The food was delicious. My kitchen was in shock with all the healthy fruits and veggies that were brought. I am still wondering what the heck hummas is and thanking God that someone brought brownies so I knew it was still my house. 

As they were leaving kids were asking when the next Ladies Night In was and trying to plan one on their own. Even the token boy-child had fun and said his brother missed out on the best night of the year. 

The next morning I met one of my friends from Ladies Night for our first 5k of the season. We both said it was so refreshing to see our neighbors who live next door yet we never seem to have time to do more than wave on the way to work. That we needed this, this time to just laugh and not worry and eat.

So this weekend, treat yourself to a DIY project you can actually enjoy. You do not have to do it as crazy-big as mine got (who knew everyone would RSVP yes and bring friends!). Invite a few ladies over, share some time just rehabbing your kitchen with laughter.



Mom in the elevator

Leave a reply

Dear Mom in the Elevator,

I’m sorry. I apologize for leaving so quickly. I saw you and your husband in the elevator at Children’s. You were wearing the badge of the NICU. You had hit the elevator for the respite floor. You looked so spent. So wiped. So scared.

As I left with Boo for her cardiology appointment I turned and said, It gets easier.

Then I left.

I’m sorry. I should have said something sooner. I should explained that it gets easier but not better. That today you are worried about your newborn and tomorrow you will be worried about you toddler.

But I swear it gets easier. You will be hit in the gut many times over the next few years decades. Right now, believe it or not, is the easiest time of your life with a sick newborn. You have the support of awesome nurses and physicians who allow you to nap, to eat, to cry and to ask questions. 

Soon, hopefully, you will be discharged. You will be scared. No, you will be terrified. As much as you looked forward to the moment of taking your baby home you are scared to your core. Because at this moment you realize you are parenting without a net. You are taking a child home that just 8 hours earlier was on a cardiac (or other) monitor. The doctors and nurses assure you that they are healthy enough to go home. As much as you (and everyone you know) prayed for this moment in time you are terrified that you are not ready.

But you are. There are just somethings you have to do to make sure you and your child stay whole.

You need to create a village. That friend that says call me, what can I do, I’m here for you. Hold them to it. Call them and say HELP ME I’M SCARED. More scared than you ever imagined. Unless you have been in the NICU you cannot describe the level of terror. They won’t get it, but they will hurt for you. They will be there for you. But only if you let them.

But I get it. I understand the moment you thought your child was going to die. The moment when you realized they would live. The moment you were told they were coming home.

It scared the crap out of me. I mean, like almost threw up I was so scared.

There will be moments in the future when you will worry, when you will cry, when you will say this is not what I signed up for…but they pale in comparison to the moment.

The moment when you go from being a parent in the NICU to a parent without a net.

Here is what you need:

  • Your partner. You are in this together. Remember that and hold them to it.
  • Your best friend. They promised to be there forever. Hold them to it.
  • Your mom. She loves you, no matter what. She might not understand what you are going through, but let her be there.
  • Your pediatrician. If you do not have one that is willing to be answer your call at 2AM find a new one. Their job is to be there for you and your child. Hold them to it.
  • Your friends. Here’s the thing. They want to be there for you. But they don’t know how. They are afraid to call and bother you, they don’t want to burden you, they are ashamed that they complain about their child talking nonstop when yours is nonverbal, they don’t know how they can help. So tell them. Tell them what you need. Be it a pizza delivered, a bathroom cleaned, a shoulder to break on or a text fest where you just spew. But let them be there. Don’t hide what you are going through because then they cannot help. You need them, it’s your job to let them know it.

Lastly, and this is the most important, listen to your inner warrior mom. You know your child better than any doctor, nurse or provider. If they smell funny to you then something is going on. I once had a nurse tell me that mother’s instinct trumps doctors order any day of the week. Remember that. 

When you gave birth to a child with a medical issue and/or special need, you didn’t just become a mom (sorry to tell you). You became a warrior mom. One who advocates, medicates, does therapy, uses Google to the ends of the research and who loves their child beyond all measure.

It does get easier. Not better, but easier. The caveat to being easier is to have your village. Go find them. Embrace them. Lean on them. I should have done it earlier. I am one of the lucky ones. My village found me. 

Dear Mom in the elevator, you are not alone. You are scared. You are terrified. You feel overwhelmed and heartsick. But you are not alone. Create your village. Embrace them. That is what makes the NICU experience bearable. I remember just 5 years ago keeping people away. I missed out on the support I needed. It took years for me to get it. That my village was there waiting to be tapped. Once I understood this journey became easier.

Not better, but easier. 

Don’t make that mistake, Dear Mom In the Elevator. Let your support system be there for you now and forever.

Love,
A parent who has been there and has the t-shirt.

A parent that is there for you, if you need.

A mom who wishes she spoke up sooner. That she said HELP. That she allowed those who love her and her child to help them.


PS–I had a different post almost ready for this Finish This Sentence Friday, Dear Mom…but then the elevator happened.

 Holy crap I’m a cohost and really hope I didn’t screw this up 🙂 Please link up below!

No interest

Leave a reply

I have no interest in being a person who wallows. I do not want to be a blog that focuses on one theme. I think of this blog as my therapy. If I am lucky it is your therapy too because you realize you are not alone.

Whether your child is healthy and ornery like Abby or challenging like Boo or your house has a crazy puppy who is equal parts loving and destroying your house. I want all to feel welcome and to feel a connection.
Then there are days like today. The day that started out promising, too rainy to run. Waking up early to realize that the morning goes smoothly without incident. You knew it was too good to last.

It started innocently enough. With your daughter telling you that her pants had a whole in the, well, crotch yesterday. A boy on the bus noticed and it ended up into a discussion about who had an elephant trunk and who was flat.

Yeah. I went there. 

You tell the boys mom. Because you want to make sure that 1. she knows your child typically does not go into school with a hole in her crotch (unless she is Kristi) and 2. that you made sure there was no inappropriate show & tell on the bus that would get either kid suspended from elementary school. The other mom kind of reacted differently than you, had ‘the talk’ with her child. You felt bad because you saw and admitted to the inappropriate humor to the situation. The fact that Kristi saw the humor and said HEY RIGHT A BLOG POST ABOUT IT made you feel better.

You think that is the most you would have to deal with in a day. You think hey I handled this maturely. I answered my daughter’s questions in a way that she understood and didn’t feel embarrassed about. I promised not to tell her dad. Thank GOD he doesn’t read the blog since I never promised her I wouldn’t tell the world. 

Then the other shoe drops. Boo happens. She has a meltdown at school and at home. Abby tries to compensate by being the good girl. She tries to placate Boo but I stop her because I do not want to reward Boo’s behavior.

I realize that I am wallowing. I am stuck in this mantra that Boo is sucking the life out of us. That as awesome as she is, she is draining.  That I suck at this. That I cannot stop wondering where Spring is. When life will get easier.

When Boo will not demand so much energy (probably not going to happen). That I will not have to demand a doctor pay attention.

That I will not think life would be easier with the Abby issues.

I never intended to resent Boo. But sometimes I do.  Sometimes I suck at this whole “special” parenting thing.

Something else I never expected to do. I never had an interest in being a parent, let alone a parent of a child with challenges. Sometimes it is great. Sometimes it sucks. Most times it is not the life I intended.

But it is my life and I am doing the best I can, even when it seems I’m not.

Finish the Sentence Friday

This is one face…

Leave a reply

Today is Autism Awareness Day. While I may not (yet) be comfortable with Boo having an added diagnosis of Autism, I am getting there. There is no escaping the fact that Boo was tested and she has been diagnosed with Autism Spectrum Disorder. But what does this a child with autism look like?
It depends on the child. When Boo was first diagnosed my friend Julie told me that Autism Speaks has a motto: Meet one child with autism and you have met one child with autism. The children are as unique as a snowflake. Each wondrous and magical and heartbreaking beautiful.  

A child with autism is born just as perfect as a child born without.



A child with autism will light up your world with their laugh just as child born without.

https://www.youtube.com/v/gFeOIM37YLU?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata


 A child with autism will love and be loved by their parents, siblings and friends just like a child without.


A child with autism may love the beach, just like a child without. However it might take them longer to enjoy the experience. They may also wear sneakers at the beach but that’s okay.


A child with autism will learn to walk, run, jump and talk. Just like a child without.

https://www.youtube.com/v/WHgntYWuEW0?version=3&f=user_uploads&c=google-webdrive-0&app=youtube_gdata


This is what a child with autism looks like.

Photo Credit: Jen Strano


Can you tell? Can you see the autism? Probably not. I hope not. I hope when you see Boo or any child you see them and not one of their diagnoses. A child with autism works harder than the child without. A child with autism spends most of their days in therapeutic environments working to attain behaviors that will allow them to be included. A child with autism is loved by their parents and their peers. By their community.

“You are so out there” is a comment I hear a lot about Boo. But how can I hide her? If I am not out there how can you know a child with a special need and realize they are just like your own child.

Beautiful. Funny. Smart. Frustrating. Heartbreaking. Mysterious. Loving. 

That’s why I blog. Why I refuse not to just stay home and hide. To hope just one person sees my child as Boo first and whatever label they put on her second. Well, eighty-third. Because let me tell you this, there is a lot of things about Boo I want people to see way before they see autism or undiagnosed genetic syndrome or intellectual disability.

This is just one face of autism. 



Please join me in sharing your child’s face, their story, their life. 

In a blink of an eye

14 Replies

Just yesterday I gave birth. Just a night ago I rocked a baby to sleep. At midnight I dealt with my baby’s first fever. At breakfast I watched my baby take her first step. At lunch I heard her say her first sentence. At twilight I watched her ride a bike for the first time. At dinner we spoke about fractions. At bedtime she brushed her teeth without prompting.

That is how quickly a decade can go. In a blink of an eye I went from being worried about a pregnancy test to being worried about doing Every Day Math with my child.

My favorite decade was this one. The one when my little girl went from drooling, to teething, to eating to talking non-stop.

My favorite decade was this one. The one when my little girl learned to roll over, sit up, crawl, walk, run and swim.

My favorite decade was this one. The one when an imaginary little sister was replaced by the in real life one. 


My favorite decade was this one. The one that led me from reading bedtime stories to watching my child fall in love with the written word.

My favorite decade was this one. The one where princesses and fairies are slowly replaced by horses.

My favorite decade was this one. The one where Santa Claus, the Easter Bunny, Leprechauns, the Tooth Fairy and Tinkerbell existed.  

My favorite decade was this one. The one where Sesame Street was replaced by Word Girl that was eventually replaced by Shake it Up. (I kind of miss Sesame Street)

My favorite decade was this one. The one where the girl who would only wear dresses (that twirled) will now only wear leggings and T-shirts. 

My favorite decade was the one that went faster than my 8th grade history class. The decade that showed me what was important in life. The decade where I received not one but two beautiful children. The decade that hasn’t happened yet. The decades still to come where I will watch them grow and flourish and become the best that they can be.

Photo Credit: Family Tree Photography


My favorite decade was this one, what was yours?

Finish the Sentence Friday

Leave a reply

Stop staring. I think to myself. Stop whispering. I think to myself. I know my child isn’t behaving. I know she is disturbing Mass. I know she just pushed your son. I’m sorry. I really am. But stop.

You don’t have to point. You don’t have to say that your children knew how to behave. That they sat quietly with a book. That they were polite and perfect. You don’t have to tell the waiter that dinner was lovely but you wish they would seat disruptive children in another part of the restaurant.

Trust me, I think that is a fabulous idea. Take the old smoking section of the restaurant, make that the adult only section. (Cause let’s face it the smoking section was always in the bar). Make a section where the families can sit. Where moms and dads can enjoy a meal they did not cook or do the dishes when the child didn’t even taste the meal. 

Where they would not feel judged. 

What I really want to scream out loud is WE ARE DOING THE BEST WE CAN.

It’s been a long decade, year, month, week, day, hour, minute. We are holding onto our sanity by a thin thread. You might believe that your child was a perfect angel. That they never raised their voice inappropriately. That they sat quietly in Mass. That they never pushed a friend or hit a sibling.  Your child would never have colored outside the lines (or on the wall).

The truth is, just like childbirth, you have forgotten what it was like to have a young child. That you were once like us. Parents burnt out by work, family and homework. You are looking back at the good times of being a parent. The time when you son got an “A+” or your daughter kicked the winning goal.

You are forgetting the pain of doing fractions. The fight to brush their teeth. That beds will be unmade. That there are temper tantrums (sometimes being performed by the parent). That we are all tired, hungry and just done. So we went to a “family-friendly” restaurant for respite.

And got spite instead. As you sat in the booth across the aisle and sipped your wine. I did feel bad when Boo screamed (with joy, mind you) so loud over the pop corn you were startled and spilled your wine. At least it was white and will not stain. When you cringed because Abby was speaking in her outdoor voice. That your experience was spoiled by Boo hitting Abby because she wanted to use the crayon Abby was currently holding.

I get it. You were just looking for a night out as well. You were not expecting to be seated across a family whose children were really excited about cheese & crackers for an appetizer. 

You could have ordered me a glass of wine, with a kind nod of a survivor who had been there, done that and survived. Instead you remarked, loud enough to be heard, that when your children were young they knew how to behave.

I really wanted to scream out loud, LIAR. Your children were probably spoiled brats or bullies or the neighborhood menace. But I didn’t. Instead I mentally thought how great it was that Boo enunciated pop corn for the first time. I blocked your stare of condemnation. I ordered my own (second) glass of wine and planned on tipping our waitress well, really well.  

I promised myself that in 20 years when my children are grown and I am seated across a mother trying to do her best I will order her a glass of wine in your honor.

Finish the Sentence Friday

Tell me, how would you finish the sentence, What I really want to scream out loud….

Dear Abby

9 Replies



Dear Abby,

When I had you I was terrified. The hospital nurses actually wrote, failure to bond in our chart. I was so sure I was going to fail you. Or worse, hurt you. You were an emergency c-section because (and I quote a doctor here) my body wasn’t meant to survive childbirth. I thought that meant I wasn’t supposed to be a mom.

In all honesty you were all I needed. You taught me how to be a mom. Not a perfect mom by any means. I did not think I had the love, patience or endurance for another child. You wanted a little sister so badly. You even had an imaginary friend whose name was simply “imaginary baby sister”. 

Then there was Boo. From the beginning you at just five years old were my rock. You, my dear sweet child, showed me that I was strong enough to handle two daughters. You, my sarcastic truth-teller were there to keep things in perspective. You, my great educator taught others how to care for Boo. 

The time you told Dawn that Boo couldn’t have peanut butter because she was allergic to dairy. The time you told a teacher that Boo was perfect, she was just in the hospital. When you taught a friend that being having a sister with a “funny pattern in her brain” just means that your sister takes a little longer to learn things. The countless times you practiced “I LOVE YOU” with Boo never knowing that is my secret desire for her to tell us she loves us.

You, Abby, are my hero. I wish I had your grace, your patience and your sense of self. You are confident in ways I can only strive to be at 40+ years. Your imagination astounds me. You are so brave, trying things that would normally terrify me. You are your father in the ways that make me love him. And in the ways that make me want to strangle him. You have an old-world soul mixed with a new-world outlook on life. You are me in the ways you are picky about eating food and in the way your sense of humor aligns with my own. You are so beautiful in your smile, your laughter and yes, your sarcasm. 

On Saturday morning, I awoke exhausted. I lay in bed and listened to Boo over the monitor at 6:30 am. She was gleefully calling your name. As I got out pretended to get out of bed to get her I heard another voice. Yours. You entered her room and quietly said, “I’m here”. You then proceeded to take her out to the living room. You got her IPAD and gave me another hour of semi-rest. You got her muffins and only called to me when her diaper exploded.

Mom I’ll do a lot of things but I won’t take care of that!

That afternoon you received your first phone call from a classmate. You went on your first ever sleep over where I did not know the parent. I didn’t sleep that night for another reason. I was worried of course. But also marveling over how quickly a decade has gone by. How the little baby I was terrified of now completes my heart in a way I never imagined. The house is empty without your presence. I am astounded by how you have grown into such a sweet young girl soon to be tween. The excitement in your voice when you called to say good night. This is the girl you would be, maybe, if you didn’t have to tailor your life to your sister. Not that you complain, ever. But I promise you, I know the sacrifices you make for Boo. That you cannot join girl scouts, after school activities or miss birthday parties because we have Boo-centered appointments.

So thank you, my sweet Abigail. For being you. For giving me an extra hour of dozing. For giving me peace. For sharing your dreams. For giving Boo your unquestioning love. For just being your awesome self.  

Keep living the dream, my Abby. When you obtain world domination this world will be a better place. I simply cannot wait to see the woman you will become.

Love, 
Mom

PS you are still not getting a pony

Never ending journey

Leave a reply

It wasn’t what I expected. For some reason when I was little I thought all I have to do is survive until I am 18. Then life would be perfect. I would be all grown-up. I would answer only to myself. I would be respected. I would be content. I would stop searching. I would know that this is where and when I was supposed to be.


As a little girl I knew just how my life would be. I would graduate high school and viola be a grown up. I would have a great job (without any training mind you). I would have a home, a husband who doted on me and children who were well-behaved, respectful and put me on the throne I deserved to be placed upon.

I had no idea that the throne would end up needing to be cleaned so often. With bleach. But I am getting ahead of the story.

I turned 18 but had a few more months of high school. No moving out for me. I did not apply to college, who knew there were deadlines? Instead I ended up at a community college for about two months. I met a boy.

Boys. I tell you it all goes wrong with boys. I thought for sure this was my prince. And he was for a few years. One would think that moving in with a boy made you all grown up. But it doesn’t. 

The boy disappointed. I am sure the girl disappointed him as well. We failed one another and we moved on. I was sucking at this grown up thing.  The silver lining years later was knowing that while we failed we did not mess up one another. We didn’t make the mistake of getting married and having children with a partner who really never could be the partner we needed.

A few years go by. I get my act together with a real job and a semi-real apartment. (Man I miss that apartment). I met a man. A good man. A man with a house. A man with a job and savings and a budget. He was (I thought) grown up. We dated. We got a dog. We moved in together. I learned he wasn’t quite grown up, but neither was I.

We got married. Had a child. Built our dream home. Continued working at a job I enjoy. I went back to college and although that did not change my career. We had another child. The first child dog went to doggy heaven. A few years went by and we got another dog. 

Life continues. 

I hit the big 4-0 more than a few years ago. Certainly now I am a grown up, right? Except I am still not. I worry if people like me. If I am accepted. I still am looking for that magic wand that makes life a fairy tale. I worry that I am failing this life. That I am failing that man and the child and the dog. Yes, I worry that I am failing the freaking dog. I need reinforcement from friends and family that I am doing a good job. I worry that I am not career-orientated enough, that I will never succeed or move “up the ladder”. I lose sleep over knowing I am not the parent I am supposed to be. I try to give my best and wonder if I will ever be good enough. At anything.

The most unexpected part of being a grownup is that I never feel I am one.
 

Finish the Sentence Friday

Will my child cause your favorite teacher to be laid off?

Leave a reply

Last week there was an article in our local paper titled, “Special Education costs blamed for (school) layoffs“. Lucky for Boo this is not her school we are talking about. However it struck a chord. Why must we pit one against another?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs.  


Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.

Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. 

But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. 

Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? 

Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other.  Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff. 

There are a lot more students taking electives than using the special education department. 

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.  


It’s okay she is turning colors…

Leave a reply

Add another diagnosis to Boo’s repertoire. Okay, not another one but “color changes” has officially been updated to Raynaud’s Disease. With this polar vortex happening, her color changes have become more pronounced and she is for the first time telling me, “hands hurt”.

Which is good.


Because, first, she is aware of the pain. Second, she is telling us and third…okay no third upside. Before seeing the doctor we asked Boo’s teachers and therapists to have her skip recess. I know that seems unfair, because the girl likes her slide. However being the mean mom that I am I thought frostbite trumps love of slides.

We finally got an appointment to see her rheumatologist this week. We left at 6:30 in the morning for a 9:30 appointment and made it on time (yeah me!).  This is typical for an early morning appointment. There have been days when we are an hour early and others when, well…when you wait three months for an appointment you better be an early bird and not the late worm.

Into the appointment walks Boo’s previous rheumatologist, the one that left us for Singapore was back. I did a happy dance. Seriously a happy dance. She told us that Boo Reynaurd’s. She further explained that typically they don’t diagnose it this young but obviously she has had it since birth. I honestly breathed a sigh of relief, we were not imagining it. Then the other shoe drops as she told me: However, due to her very low blood pressure we cannot treat her as we typically would medicate. The risk of bottoming out her pressure is not acceptable to the benefit of providing her relief.

Um, low blood pressure? We were just seen by cardiology. Remember, we don’t have to go back for five years! They never mentioned anything about a blood pressure issue. We immediately place a call into cardiology and in typical fashion hear back two days later. 

It seems Boo has always had significantly low blood pressure. We were not told as it does not seem to impact her. Because she isn’t complaining that she is dizzy (would she know how to?) or passing out (obvious clue thank goodness) there is no reason at this time to worry about it.

But if she passes out be sure to call them ASAP. Dude, I’m not calling you I’m calling 911 if that starts to happen. Of course we are not going to medicate the Raynaurd’s if giving her medication will potentially bottom out her blood pressure and kill her. We will keep her warm and try to limit her exposure to the polar vortex.

I am struggling with the faith that some day, some freaking day, instead of being told: well, it isn’t normal but it doesn’t seem to bother her (or my new favorite: just keep doing what you are doing because it is working) a physician is going to say to me:
  

This is what Boo has and this is how we are going to treat it.