Mommy Monday-2012

Welcome!

Mommy Monday 2012 is here!! Every year I wonder what MM will end up looking like.  Will it totally fall flat? Will all the Mommies tell me to bug off? Will anyone actually read the interview??  MM also comes during just about my busiest time of year...

BUT (always with the but)..

Despite the obstacles, the craziness and my inner critic (dang her) it always works out perfectly.  This year has been no different and just like years past I have had the immense pleasure of interviewing some amazing women.

Now enough with my blathering.. Let's meet Brooke:)

Brooke Acuff is Mother to Taylor (14 3/4) and Olivia (11 3/4) and wife to Jamie. I asked her to be a part of Mommy Monday this year to talk a bit about her daughter Olivia. I don't know Olivia's story very well (ok at all) but I do know that Olivia was born with a form of dwarfism.  Isabelle (my daughter) struck up a friendship with Olivia last year, and we quickly found out she really is just about the most spirited vivacious girl around! I was immediately struck with her tenacity, zest and love for life. She does not seem to let her differences slow her down one bit and is an inspiration to those around her! I asked Brooke to be a part of MM after I read a very inspiring facebook post she posted about sweet Olivia..Thanks so much Brooke for agreeing to chat.

Thank you for asking me Amber.  I admire your family and you as a mother so much.  I also wish I had half your talent. 

Olivia was your second pregnancy, your first born Taylor must have been around 2  when you got pregnant. Tell me a little bit about your life then.. When we found out I was pregnant with Olivia, we had just moved to Snohomish.  We were living in Shoreline, WA and decided that we wanted a little land and a newer house.  We had been living in a house that was built in 1935 and as soon as the remodel was complete,  we sold it.  Jamie was commuting to Redmond. I cut my hours back to part time after Taylor was born.  I had just enrolled Taylor in Snohomish Co-Op Preschool.  We were busy but making our life work for our family.

Unfortunately, my dad retired as a fireman after 30+ years in November of 1999.  He came down with what we thought was pneumonia in December.  We found out in January that he had lung cancer.  I was approximately two months pregnant.

How far into the pregnancy were you before you knew something was different? I was feeling pretty well with the exception of being extremely tired.  Not only was I working and chasing after a toddler, I was traveling home a few hours away to support my Mom and  to spend time with my Dad as much as I could.  Did I mention I had a husband too?  I cringe thinking about that time.  Did I even have time to ask him how his day was?

In an early prenatal visit, a triple test was performed at my doctor's office.   The test came back abnormal.   My OB-GYN decided to send us down to Swedish Hospital for an ultrasound.  We had the appointment at Swedish and at the time of the ultrasound, they did not detect any abnormalities although they stated they couldn't see her stomach.  They measured all her limbs, head circumference and everything looked fine.  They suggested an amniocentesis.  At the time, we decided against it due to the risk factors.  Jamie and I had faith that whatever was to come that we would handle it.  In June of 2000, I was 7 months pregnant and went in for a routine prenatal visit.   My doctor  thought it would be best to send me downstairs to perform one more ultrasound.  My doctor wanted to make sure that my daughter's stomach was visible.  My husband was working and I had gone to the appointment by myself.  As the ultrasound was being performed, the technician asked me several times when my due date was.  My stomach dropped.  I knew something was wrong.   Of course, at that point I asked her why, had she seen something I should be worried about.  She requested I return to my doctor's office and speak with my OB.  My heart was pounding.  I knew that whatever they were about to tell me was not going to be something I wanted to hear.  I said a prayer that whatever the news was, I wanted this child to be healthy.  My doctor met me in an exam room and stated that she had received the ultrasound results.  She told me that based on the results there was a good possibility that my daughter was going to be born with a condition called achondroplasia dwarfism.  I was shocked.  Had I just heard the word dwarfism?  I thought I had prepared myself for down syndrome even though the doctors had ruled that out.  I had even prepared myself for some kind of health issues.  I was not prepared for the word dwarfism.  I knew nothing about dwarfism.  The only thing I knew about dwarfism were the negative connotations about little people that had been portrayed in the movies or on television.  I had never been met or been exposed to a  little person in my life.  The only time I had ever seen a little person was on Wizard of Oz, Snow White or in a circus.  I drove home devastated and sobbing.  I had to inform my husband over the phone.  It isn't on the top 10 of my life's best moments.

So here you are with a toddler a new baby on the way and some news that really will change your life forever. How did you even wrap your head around that?  To be honest, I couldn't wrap my head around everything that was happening.  My father had just passed away.  My family and I were in the early stages of the grieving process.  I was terrified for my unborn child.  I wasn't able to physically hold her to know that she was going to be okay.  I had a period of feeling  sorry for myself and my family.   My husband was really good about being in the moment and not projecting his fears for the future.  I was an emotional wreck.  I really wanted him to be as concerned as I was.  I know that sounds ridiculous now.  I just couldn't see past how this was going to affect my unborn child and our entire family.  Some people ask me if it was better to know before my daughter was born.  I'm not sure if it was for me.  Most families find out after the baby is born.  Ultrasounds at 5 months usually don't show the slowed progression of growth.  It gave me a lot of time to look on the internet at the worst case scenarios. There are some health concerns related to Olivia's condition.   Then, there was the social aspect to worry about.  I had A LOT to wrap my head around! 

   
How was the remainder of your pregnancy? Your delivery?  The remainder of my pregnancy was a little intense.   I had weekly appointments at my doctor's office for stress tests.  I left my job after 12 years.  My sister caught the ferry one day and knocked on my door.   She told me about an organization called Little People of America.  She also found a lab to test the gene for achondroplasia.  Jamie and I decided to move forward with an amnio and send it to the lab for testing.  We received a letter confirming that Olivia would have achondroplasia.  Looking back, I'm not sure why I needed that confirmation.  Although, I remember the day we received confirmation, my outlook changed. Instead of feeling sorry for myself, I decided to educate myself and be the best mom I could be to my daughter.  I knew that this child had been given to me for a reason beyond my understanding.  I owed it to her and to my family.    The LPA connected me with a family in the area who has a daughter with achondroplasia.  I was able to go to their house and meet with them.  

My delivery was the event of Everett.  My doctor decided that she should be delivered a few weeks early.  I think I had about 12 doctors in the room.  Compared to Taylor's birth, the delivery was a piece of cake.  The doctors' looked at her, we looked at her and  confirmed that "yes, it's a perfectly, healthy baby!"   There were signs of dwarfism although if we didn't know what they were, I don't think we would have realized it right away.   

Ok, I'm going to fast forward just a bit (like 12 years!) One day Isabelle came home and told me how she felt sorry for Olivia during the Halloween parade at school. She mentioned that lots of the younger kids stare..talk about that. How was it sending Olivia off to school? Kids can be cruel, but they also don't have one BIT of a filter.. Struggles? Joys? My inner Mother bear cannot stand the thought of what that part has been like for you.. Sending Olivia to school was difficult.  I do have to admit, it was also difficult to send Taylor to school.  I had surrounded myself with this incredible community and incredible mothers.  My family is a huge support system for us.  Olivia had also attended Snohomish Co-Op Preschool and there were several children entering her kindergarten class.  I knew that those mothers would take care of her when I couldn't.  Olivia has met  a few really close friends along the way who protect and love her. We have had some struggles at school but nothing we haven't been able to overcome.  We have had some wonderful teachers.   When Olivia was younger, we would have the teacher or Olivia read a book to the class about being little and how she can do everything everyone else does.  She might just have to do it in a different way.  I also sent letters home to the parents introducing them to Olivia, explaining her condition, what terminology was appropriate and that we were open to any questions.  We would explain the word midget is highly offensive to dwarfs or little people.  We also try not to use the word normal and instead use the word average.  What is normal?  Olivia has dealt with other's curiosity better than I have some days.  She will smile, wave, say hello or answer questions about why she is so short.  If she doesn't feel like educating people that day, she doesn't.  We talk all the time about how we are responsible to educating others.  Like myself, some people have never seen a little person before.  Olivia is now comfortable enough and old enough to talk to kids who are curious.  She does a pretty good job of ignoring the negative and not letting it seep into who she is as a person.  My husband has also been a huge contributor to how Olivia reacts to other's interest in her.  He was born with a birth mark on his face and has lived with what she goes through on a daily basis.  He is the most confident, self assured person I know.  I'm not saying it's easy.  Sometimes, I would like to just go to the grocery store without having to stop and acknowledge someone who is staring a little too long.  Although, it is a small price to pay for the gift we have received.

Middle school is next year...Nervous? I think the theme of this interview, is that I worry!  I also have gathered a priceless female  friend along the way who is as protective as I am about Olivia and does some of that worrying for me.  I'm going to meet with the school in a few weeks to go over Olivia's needs.  I have total faith in Olivia that she will make her way through middle school, the same way she has made it through elementary.  She is a determined, spirited, shining light.  Before Olivia was born, I asked my mom what I would say to her when kids are teasing her.  My mom asked me what I was going to say to Taylor.  As much as it saddens me , every child goes through hard times at school.  Olivia may have a higher hill to climb but we will get through it together.   Olivia is a lively firecracker. I sometimes worry about the other people who may not treat her the way she wants to be treated.

One thing that is so obvious about your family is the love and protection that you all feel for Olivia. Taylor seems like just about the best big sister around. Has she always been that way? Has it ever been hard for her? 

Taylor is an remarkable, young lady.  It is a hard question to answer though.  Taylor doesn't know anything different.  Olivia is her sister.  Someone who she loves, irritates, argues with, protects and mentors.  Taylor has a huge capacity to love and compassion for others. I'm sure Olivia's condition has something to do with that.  If Taylor is upset by a comment or stare, she usually kicks in to protective mode.  It's okay for her to give Olivia a bad time but no one else. 

Isabelle also talks a lot about Olivia's connection with other kids with dwarfism. She goes to a LPA camp every summer and seems to love it.. how important has it been for her to be with other kids just like her? I think one of the most important things we can do for Olivia is to keep her connected with other people just like her.  She has a close friend who lives just north of us that she sees every couple of months.  She went to camp for her first time last year and wanted to stay.  It was one week out of the year where no one stared or laughed at her.  She was just like everyone else.  We have local events monthly.  We attend a national conventional once a year held in different places throughout the United States.  As much as I want to help her through issues, there are times when I just don't understand.  Her LPA family does.  They have also given our family tremendous support.  

You may not know this, but Olivia has inadvertently taught Isabelle so much. Such wonderful honest life lessons about kindness, empathy and respect of others. God has blessed you with a special girl (s) Tell me just a few of the things you and your family have learned from Olivia? 
This question brought tears to my eyes.  I'm grateful that Isabelle and Olivia have shared this path. Olivia has taught us that not all disabilities are on the outside sometimes they are within ourselves.  Olivia has taught us to never underestimate anyone.  If you are determined enough, you can make it happen.  Of course, she has taught us that compassion for others is a human necessity.  

Can you pass on any words of wisdom to other mothers?  Not to worry!   (Insert laughter!)  You never know what is around the corner.   You have to trust that whatever is given to you in your life, is for a reason.  Trust that you will grow in ways that you could never imagine.  Be kind to yourself.  We are all work in progress.  

Fun question.. describe a perfect day for the Acuff family.  A perfect day for our family would start with sleeping in!  No one in my family likes to wake up.  Especially on a school day it seems!  We would head over to our family cabin and meet up with friends or family or just ourselves.  I'm sure our day would involve some sort of body of water, sand, good food, adventure and sun .I would prefer a beach cabana in Maui but I'll work with what we've got.  At the end of the day, we would acknowledge that these perfect moments and the not so perfect moments have created this beautiful life we have been blessed with.      

I have included a poem I received while I was pregnant with Olivia.  I read it several times while I was pregnant and it expressed how I was feeling at the time.  The poem for me is not a poignant as it was when Olivia was a baby.  I much prefer Holland now.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very  significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.