Mommy Monday (on Tuesday..roll with me here)

Normally my Mommy Monday interviews are past tense.. meaning I interview Mothers that have already gone through hardship.. have already processed it.. maybe healed a bit (time is a comforting balm).  This week our interview is current.. the pain still real... questions still unanswered. If you have an extra minute or two today, leave a note of encouragement for this family that does so much for so many others.  If you would like to snail-mail a card or letter you can find all the info needed at thesupercooper.com (getting mail is awesome!). Let's give this family some Tres Birds love:)


Patti Gokee is wife to Jeff, mother to Ben (11) and Cooper (8). The Gokee's came into our lives when we were a bit lonely and displaced after our move to Arizona in 09. Our families instantly clicked. They are good peeps, Strehle kind of peeps, we are blessed to call them friends.

(All images by Session Nine Photography)

A few months ago Jeff tweeted about praying for Cooper who was having some blood work done.. it seemed like no big deal. (well as much as you can tell these types of things via Twitter!) Next thing I know he is asking for prayer about a diagnoses of Leukemia... cancer..really? Um.. that must have been a bit out of left field. Talk to me a bit about why you even brought him to the Dr.. was he even sick? 
Cooper had fallen off our bathroom sink pretty badly and was complaining of leg and side pain.  He is not normally a complainer and it just felt unusual for him to be complaining of this much pain.  He is our risk taker and tough-man.  So of course I thought maybe he had fractured a bone.  After the second day of screaming that it hurt so bad, I drove him to the Chandler ER in the middle of the night.  Jeff thought I was crazy, as I have never taken our kids to the ER or even thought of it in the middle of the night.  I just wanted to know if he fractured his leg.  After a long night there, his x-rays turned out normal and they sent me home without having the results back from the blood tests.   They didn’t seem important at the time, we had gone in for a broken bone.  A week later the blood tests show up at our pediatricians’ office, they read ACUTE LEUKEMIA…WHATTT??? We thought they were idiots and had made a mistake.  Our doctor thought they were crazy too, but kept insisting to see Cooper.  I was still in broken leg mode and said he was fine.  Very long story short we had multiple blood tests done.  Some were questionable and some were fine.  The last one we did for the pediatrician was on a Friday morning, then that night she sent us to PHX Children’s to have them do another one in the ER.  We knew then this was serious, especially when she told us she had called and spoke to Dr. Etzel the head of Oncology at Children's.  Ahhh, I dropped my pencil and lost my breathe for a moment…we knew his name very well, he is the Dr. of our friend's daughter.. a daughter with cancer. He had blasts in his last few blood tests and they seemed to be increasing.  Blasts are signs of Leukemia.  His last blood test Friday morning showed 6% blasts.  After spending 6 hours in PHX Childrens ER his tests came back negative and 0 blasts!  We rejoiced and counted it a miracle, as they were there before and now gone! 6 days later we went back to PHX Children’s for a follow up.  They did one more blood test to prove he was fine. 2 hours later we received the news that they only checked 70 cells and he had 11% blasts in them.  We had already left the hospital, they told us to turn around and that they had a room for waiting for him.  Yes, it hit us like a TON of bricks.  I couldn’t react because Cooper was in the car with us.

So basically one day your trucking along all normal like (what IS normally anyways??) next you are in the middle of something no one would ever wish for. How do you even begin to process that?

I don’t know if I did process it, right away anyways…
I was trying to remain calm and listen to the doctors explain what he had, I really don’t know if I heard everything.  I was too busy trying to shelter the news from Coop, until I could find a way to explain it to him.

What does a normal week for a Leukemia patient look like?

 I would love to know that too. :) They really won’t give us too much info because it keeps changing- treatment wise.  We did receive a schedule for the last month, for which I was ecstatic!  Now, I don’t have that.  It keeps changing, and they don’t want us to plan anything.  That is hard.  We are not planners by nature, but it would be nice to see a few weeks out.  Normally, we should have chemo once a week in the clinic.  3 or 4 different kinds, we have been having lumbar punctures (spinal taps) to check and make sure it has not progressed into his spine, and then he gets a shot of chemo into his back.  We give chemo pills at home, and now shots too.  They change from week to week.  Nothing is consistent. 

Even though all these scary words were being tossed around, his original prognosis was very positive. Has that changed? 

Leukemia A.L.L is what they say is a “good” cancer to get as a kid if you get one.  As horrible as that sounds.  It is a 3 year battle, but has a great success rate.  Cooper still has that, but they have now found a new weird chromosome that took us from standard (low risk) to severely high risk.   That was a tough moment.  Everything changed…again.  We lost some of those precious percentages that we loved, and our treatment dramatically changed into much more intense.  We still have great percentage rates, just not what we had before. God is so good, he has brought some pretty amazing people into your lives.. from an incredible website that was up and running in days to close dear friends that have been such an amazing support.. tell me a little bit about your peeps. Yes, our friend Jay made an incredible website for us, we are so thankful for his friendship and CRAZY talent!  We have trusted friends who watched Ben for us while we were in the hospital-such a priceless gift!  Cooper has an amazing teacher that jumped right in and researched how to explain and lead her class in this time.  We have many friends who sent cards and gifts and even meals.  We also have some special friends who took family photo’s for us on last minute notice, before he lost his hair and started feeling really sick.  We are so thankful for the people God has put in our life, and there are so many more that I didn’t mention. 

Cooper is not your only son, how has this affected Ben? Poor guy, I can't hardly stand how hard it must be for him to watch his little brother be sick. 
Big brother Ben, what can I say…God knew Cooper would need the perfect brother to support him in this time.  God had already been preparing him as he was learning how to support another friend going through cancer.  Little did we know, in these moments he was being prepared to care for his best friend and brother.

It has been hard on him, we won’t lie.  School was an absolute nightmare for him the first 4 weeks.  He had a classmate who died of Leukemia last September.  It still is very fresh for him and his classmates.  He is 11, and to support his privacy I will leave it here.  It has been rough, and we are thankful to friends who have loved on him. 

 So going forward, what does Cooper's care look like? 

I honestly don’t know….we have an idea, but that is it.  Chemo at home and clinic.  Lumbar punctures in the hospital and shots and pills at home.  It is a little overwhelming when I sit and think about it because I don’t know.  We do know in the next 6 weeks we should start in-patient care.  It will be one week in patient one out, for 8 weeks.  NOT looking forward to that. 

Ok, tough question...God's sovereignty ... Did you have a moment of anger? Doubt? Disbelief? I could hardly blame you. If God is in control, then why do bad things happen? How do you answer that question deep down, how to you resolve to believe God knows all.. good and bad? 

Wow, Amber...don’t hold back :) Moment of anger, doubt, disbelief …huh, I have racked my brain I can remember anger.  It was the day after we got home from the hospital.  I heard of the little boy who took Cooper’s room at the hospital.  This was my moment of anger, this was my moment of questioning…I yelled and screamed, swore and maybe even threw something…oh dear, and right in front of my kids.  I was MAD! We had been church hunting, and had attended this one church in Chandler for 4 or 5 weeks.  It seemed at the time to be the best fit for our family and I believe God was telling us you have found your home church, but I am a skeptic and needed more time and evidence that this place was authentic.  Little did I know that Cooper had made a friend in his second grade Sunday School class.  His name was Caleb, and it was Caleb who took his spot in the hospital, same room, same bed!  WHAT THE HELL?????  WHAT IS GOING ON????? I was MAD, but I didn’t question God’s deity, just what the heck are you doing?! 2 pastors boys, same church, same class, same age, and Leukemia. I begged God to tell/show us why.  We also have good friends whose daughter has a brain tumor.  We have been praying diligently for the last 3 years for her totally healing.  We were not strangers to the world of cancer, but it definitely felt like another kick in the stomach! I never questioned who God is or where He was.  I felt such amazing strength during those first couple of weeks, and such peace.  This was definitely a moment of questioning His doings. I DO NOT doubt the goodness of God.  Although I would never pick this for my child or family, I know He has a plan.  I know it is good because He is GOOD!  Do I like it…NO, would I chose it NO!  But thankful I am not God.  But really, who do I think I am, if God does know ALL and IS good then I need to trust His plan even though it stinks for us to walk through.  I don’t like it, but if I ask why my kid, then I have to look at all the other kids and ask why too.  When you meet other sick kids, this question isn’t so hard to answer.  They are all precious and never deserved this.  It is sin in our world, and for me to question God why my kid, just seems a little selfish.  Why all these kids!  I believe He is good because He has been preparing us for this.  Through friends and circumstances each one of us was a little more prepared.  Now, I know no one is prepared to hear your child has cancer, but he so graciously had us see into this world before we knew. 

How has this changed your perspective? Are you seeing the world through different lenses? 

I am living a little more “free-er” ha, ha not even a word.  I am taking things a little lighter and seeing moments more precious and intentional.  I feel an urgency to live life in today.  None of us are promised tomorrow, and although our prognosis is good, all it takes is a little infection or fever (while his counts are low) to change our numbers.  But, really that’s all it takes for any of us, driving to work or the store, sudden aneurism we weren’t prepared for…ect.  I have a friend that explained it to me last year as “we are all terminal.”  When you watch your child be pumped full of poison with a liquid that the nurses and doctors protect themselves from, that fact just hits closer to home. 

Fun Question..Think back to a day recently when the all the world seemed right, a moment when you looked around and thought about how good life was.. tell me about it. 

This is still very fresh for me. I am sorry to say, there isn’t one, and although that made me sad for a minute, I realized there are many good moments of where I can see God’s hand moving.  Nothing is “normal” anymore, and although we desperately want it to be, we can see God’s hand more clear these days.  He is good and has provided us with great doctor’s and medical staff.  We are truly growing to love them, and know we got the good ones   He has given us amazing friends and people who have come along side us to help us carry the burden.  Including a new friendship with Caleb’s family.  He’s has given us a new and caring church, and provided the PERFECT teacher for Cooper this year.  He has provided friends who have walked this road before us to help guide us through the crazy days.  His timing was perfect every step of the way.  From where Ben stayed and even in the days we were diagnosed.  It all came together with work schedules and cancelled trips.  As we look back, He has been here, He has been walking with us, and has provided glimpses of himself along the way.  It is a new world, one I wouldn’t have chosen, but it is a time that we can see His hand moving SO clearly, and we beg he would grab others through our struggles and Cooper’s fight.


Please keep Cooper in your prayers.  You can keep up to date with the Gokee's at www.thesupercooper.com. 

Mommy Monday

It's a bit of a funny thing when a MM story is dropped in my lap.  All year I keep my heart and eyes open for that certain Mother who sparks my interest, a story that breaks my heart a woman who shows strength beyond measure...

This weeks Mommy..

Melanie is wife to Clay and mother to Myah (5) they reside in a small community east of the mountains here in Washington State.  Last summer I had a long conversation with Melanie's Mom.  She told Mel's story about her first born baby girl, Shaya.  It was one of those stories.. the kind that stick.. the one you don't easily shake.  Let's meet yet another amazing Mommy.


Mel! Thank you soo much for your willingness to share your story this week!  First, let's talk a little bit about your life before Shaya.  You and Clay had been married a few years before she came along.  On 11/29/04 you welcomed a beautiful baby girl into the world.  What were your thoughts on becoming a new Mother?

We were both so excited! Both of us were ready and our whole family was happy for us!

How was your pregnancy? At what point did you know something was not quite right.

I had a normal pregnancy. In labor, the baby was in distress so the doctors delivered her c-section.  She was PERFECT.  Then when she was 6 days old, we noticed a few things were off.  She wasn't eating, she wasn't peeing a lot, and her left leg was turning a little "off color" (blotchy purple).  We were having Clay's 30's birthday party at the beginning of December and we asked a friend our our's (a nurse practitioner) what we should do.  He told us we should go to the ER in Spokane.. just in case. After 6 hours in the ER and then another several hours of test, X-rays, scans, ect, the doctors determined that she had a blocked clot in her descending aorta.  It had cut off blood flow to her kidneys and lower extremities.  She was taken into emergency surgery and give a 5% chance of survival.  She was then flown to Seattle Children's Hospital.

So here you have this "normal" pregnancy, pretty normal delivery then 7 days later you are on the other side of the state.. your sweet baby girl is given a 5% chance of survival... talk a bit about what you were feeling then.. coping? Even putting one foot in front of the other?

Coping with the sheer trauma of the situation was something that I could only do by the grace of God! When I boarded the back of the plane from Spokane to Seattle, I had no idea if my baby would make it there alive. It was in that moment that I prayed and asked God to give me the strength to keep my emotions as "in check" as possible so I could make sound decisions about her care. I knew the doctors would give us tons of information that we would need to make decisions about - and it would be my job to know all the facts.  Shaya's nurse Stephanie (who was with us the first night) made us feel so supported (as did many of the other staff there). She did one small thing that made a huge impact - she made us SMILE again. Our friends and family were also an amazing support system. Faith in a sovereign God...family....friends...and a caring medical staff...without all of those elements, I could not have coped.

We were at Children's for 4 months. The first few days were chaotic. We had no idea where to stay, what to do, etc. Clay, my mom, my brother and sister-in-law and I were all there taking shifts in the IICU with Shaya. The first thing we had to figure out was sleeping arrangements. We were encouraged to check in at the Ronald McDonald House. It was only across the street but (at first) it felt a million miles away from the IICU. My mom was incredible. She used the kitchen and pantry at the RMH to make us home cooked meals. She did our laundry. She took care of our day to day physical needs. My mom had to leave after almost 2 months. She was a teacher and we knew she needed to get back to work. However, she came back MANY weekends to visit. I never left Seattle. Clay was there the entire time until he had to leave for the police academy. Even then, he called all the time and spent every weekend with us in Seattle. After a couple months, I got into a routine - going between the hospital and the RMH. I knew I had a child who would have intense medical needs for a very long time so I had mentally prepared myself for the hospital life to become my "norm". 


Clay is driving back and forth over the mountain, going to the police academy during the week.. that must have killed him, talk a bit about your relationship during that time.

Yes, Clay was traveling back and forth across the state each weekend and it was SO DIFFICULT for him to be away from us. He doubted his decision to go to the academy the whole time. But he was such a rock for me while we were dealing with all of Shaya's medical issues. I felt like I was able to draw from his strength. He always seemed to ask the doctors all the right questions and fight for Shaya. It was intense, though. Now I see why situations like that either make you or break you as a couple. This ordeal definately drew us closer together because we made each decisions together and relied on God for the strength to make it.


4 months in the hospital is a long time.  Did it feel long? Was it hard to watch everyone around resume normal lives?

4 months seemed like a long time. My friend Shanna at the RMH was there with her daughter who had cancer and she would say things like, "All I want to do is sit on a porch swing with a glass of iced tea with my family and be normal." And that's how I felt, too. I felt like I would never take a "normal life" for granted ever again. I would appreciate little things like: sipping iced tea, walks and sunny days. By the 3rd month there, I was getting into a routine. I had many, many visits from friends and family, which helped me not feel lonely.

Speaking of visits, you had (and still have) a simply amazing support system..talk to me about your peeps:)

(Shaya and Granny)

My mom and my family were by our side the entire time. Mom, Mark and sister-in-law drove Clay from Spokane to Seattle in a blizzard when Shaya was first hospitalized. They made sure we were all set up at the Ronald McDonald house. Mom stayed with us for 2 months and took care of us. She was an INCREDIBLE support! My friend Mary came up from Portland to be by my side several times. Our friends and family were there for us constantly. Some of our friends and Clay's parents even flew out from Virginia. Our church family in Summit Valley sent letters, cards and money to help us out. We never really felt alone because we had so much support. We had about 30 visitors come see Shaya in the hospital. Without all that support, I'm not sure I could've made it emotionally.

4 months into this new life...

We were preparing to take Shaya home and we were SO EXCITED! To make that transition, she had to stay with me at the RMH for a few weeks. Our nurse, Linda, loaded us and all of our equipment from the hospital in her own personal van and moved us into the RMH. Moving Shaya out of the hospital and to the RMH with me was one of the most terrifying things I've ever experienced. I had a total melt-down (ok, it may have been a panic attack!) I was sobbing because all of the sudden I was fully in charge of administering meds, dialysis, feeding tube, etc. I called my friend Alicia who lived in Lynnwood and asked her if she could come stay with me and she graciously accepted! Two days later, I took Shaya in for her regular check-up at the hospital and they told me I had to re-admit her to the hospital. She was placed in a room that was not on the IICU floor. I tried to tell myself that this was just a "bump in the road" but deep down, I knew everything was "off". During the weeks preceding, my mom had felt a strong call to go on a missions trip and she had just returned to the states. She did not even go home before she came to the hospital (yes, that's how awesome my mom is!).  She agreed with me - Shaya was not stabilizing very well. I had to go back to the RMH and get a pice of paper for a nurse and grab a change of clothes. My mom stayed with Shaya. I was literally gone for 10 minutes when I got THE CALL from my mom saying to get over to the hospital because Shaya was "coding" (cardiac arrest). My legs went numb and I tore out of that place in a panic. I rushed up to Shaya's room and what I encountered was unbelievable. There were at least 15 people in her room. They were all working in sync and the room was very quiet, but the feeling was very heavy. Louine (the ICU social worker) held on to me the entire time as we all watched helplessly. The doctor on the floor performed CPR for about 20 minutes. Then, they took her to the IICU. I called Clay (who was at the police academy) and gave him the news. Clay was on a plane to Seattle within the hour. My mom called my brother, sister, sister-in-law, pastor & his wife, and my friend Mary who were all there within 24 hours. When Clay arrived, we sat down with the doctor and Louine and he told us that there was nothing more they could do and that our baby girl would never recover. The news was a blow and all we could do is sit with her until she died. In the 24 hours following that conversation, our room in the IICU was a revolving door or friends, family and hospital staff who were all coming to say their goodbyes. It was hard to watch these people who had fought SO HARD for SO LONG say goodbye. Whenever I would step out of her room, I would see medical staff in tears. But it was comforting to know that they LOVED our child. I was holding Shaya as she passed away and words cannot describe 
the heartache we felt as we said goodbye to her.

 

Going forward..

Clay and I had a long car ride home together. We cried the entire time. But it was during that time when we talked about getting through this together. We gave each other permission to get through each day in our own way (as long as it wasn't destructive). Some days Clay was ok and I was not - and vice versa. But we were there for one another. One of the most difficult things for me to overcome as I came home was an overwhelming feeling of "NOW WHAT"? I had quit my job when I was pregnant. And now my job as a mom was over. One thing I did was go to our friend Rosie's scrapbooking store about 3 days per week and scrapbooked Shaya's life. It was so therapeutic. About 2 months after Shaya passed away, Clay started pushing me to get a job. He could see that I needed to keep moving forward. I didn't really FEEL like moving forward but I applied for - and got a job - in the school district where I currently work. God is so good...He provided a job for me with people who supported me both emotionally and spiritually. They helped me take one day at a time.


Then came something a little unexpected..


About 5 months after I started my new job, I found out I was pregnant. Truthfully we were devastated at first. We did not feel prepared for another baby AT ALL. My entire pregnancy was filled with tests and ultrasounds. The thought of the same thing happening all over again was terrifying. Then, when we went in to the ultrasound and found out we were having another girl, we both fell apart (the poor ultrasound lady must've thought we were crazy!). But once Myah arrived, we were so happy. And looking back now, I'm glad we had another girl! After we had Myah, we found JOY again!

How did Myah help you heal?

Having Myah has been healing in so many ways. She brought our JOY back. She makes us SMILE and LAUGH. She helped us move forward. I'm not sure we ever would've "planned" to have another baby so she was definitely a gift from God! Just the other day she told me that she wished Shaya was still alive. We talked about it for awhile. I explained to Myah that when Shaya passed away, our hearts were very, very sad. But then God gave us Myah and our hearts were HAPPY again! 

Even if I don't understand all the REASONS we go through trials, I know that God can use our heartbreak to comfort others....2 Cornithians 1: 3-4 "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God."

Ok lady, fun question.

10 days outside the US with 10 people.  (this might be hard because you have such a big family!!)

10 Days outside the US with 10 People....I would love to go somewhere like Australia or Bora Bora and enjoy the beautiful beaches! This sounds horrible but I might not take Clay because he HATES flying and would probably rather NOT go!! If we were taking a road trip, he would be #1 on my list, though! I would probably make it a "girl trip" and take: Mary Jane, Rachelle, Jennie and Michelle (four of my close girl friends) and Tammy (my sister in law), Mindy (my sister), my Mom, Mikaela & Morgan (two of my nieces who have baby sat for me so many times that they deserve a trip!) and Myah. 

Why.

(One of) My Muse.

What fuels you?

What makes you want to create?

Where is your muse?

I had a bit of a unexpected derailing this week.  It's funny how life sends you these curve balls, especially when your feeling up in the count (which was my first mistake).. you think maybe you have out-smarted your pitcher.. you know what they are going to throw at you next.. right?

Wrong.

So my dear friend said, "Amber why do you write? Why are you doing Mommy Monday?"

I'm not even sure what I sputtered out at that moment, but I have thought hard about that question the past few days..

I love to tell a good story. I love being a Mother.  I admire other Mothers.  There is nothing quite like us Mothers, my heart is pulled in many directions, but the direction towards my children pulls strongest.

In my story telling I want, no I DESIRE, CRAVE, NEED to invoke emotion.  I want you to feel empathy, I want you to feel compassion, love, respect, awe...

I want us to walk a bit in each others shoes.. not to glorify pain, suffering or hardship.. but rather to strengthen our resolve, give a glimpse into others battles.  When we started on this journey we thought it would be perfectly clean homes, orgasmic marriages and smiling wee babes..

When it doesn't turn out that way.. when our white picket fence starts to chip paint we fight feelings of failure.

Marriages fail, addiction wins, relationships strain, children make decisions that just might KILL us, we get sick, jobs are lost, death comes unexpectedly..

These moments do not equal weakness.

That is the biggest lie you have ever been told.

It is in that moment.. that is the moment where life is honestly, dirty, gritty, raw, ugly cry and all.. it is where life is lived.. it is where our true character is defined.

It is where we are made.

Our greatest strengths comes from our greatest pain.

It is in that moment you have a story to tell.

That is the story I want to tell.

Mommy Monday to resume next week.

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.

Wrestling.

The first time I questioned God I was 8 years old.

I was in the angry phase of grief.  No one told me about those 5 phases (denial, anger, bargaining, depression and acceptance). Alone with no one around to comfort a deeply grief stricken little girl, I lashed out at the only person I thought to blame.

God.

My Sunday School teacher at our local Methodist church had taught me that everything comes from God. I thought she only meant fun things like.. Santa, potlucks and the tasty grape juice and crackers we ate once a month for communion.. not death.

"Why did you take my mother away?"
"What did I do wrong?"
"What am I going to do now?"

When my tears and questions came back unanswered I moved to anger.

"I hate you."

Last year when I was traveling in Kenya we were making our morning trek down to the school.  It was already sweltering hot.. like so so Africa hot.  On the way we passed a woman, she was making her way up the (super steep) hill from the school, she had an infant with a blanket draped over him/her slung over her shoulder. Janet stopped her, said a few words in Swahili and pulled back the blanket.

I sucked my breath in quickly as a baby almost dead or possibly already dead was revealed, it's eyes lolled back in it's sweet, sweaty head..my heart pounded hard in my chest.. the mother looked frantic..a mixture of fear and partial awe as she stood in front of a group of white people staring at her.

I had to look away.. A group of spoiled privileged Americans fawning over the suffering African baby.. how cliche.. bile churned in my stomach.

Have you ever thought about how intimate death is?

Janet said what we all knew, "the baby is not going to make it, she is on her way to the clinic, but I think it is too late."  We turned, walked on..it was like our own little funeral procession.

My throat ached from holding back the sobs that wanted badly to escape.  I was first to volunteer to go stack bricks.. behind the school.. alone.
The tears came quickly, I gulped for air as the bitter taste of grief made my stomach turn.. sweat mixed with kenyan dirt stung my eyes.. I tried desperately to shake the memory.. like tap my ruby slippers 3 times, wake up and have it all be a dream.

It was not a dream, then my heart took a turn I was a little surprised by.. again anger at God.

What made me so special? What had this child ever done to deserve this? Why is the world such an awful place? Why does death sting so badly? Suffering?

Why?
Why?
Why?

Here I was in a remote village in Kenya engaging in a major wrestling match with my Maker.  It was not just the baby, or even loosing a parent.. but lots of things.. it just all came spilling out that very moment.  The scales had finally tipped.. my soul needed to purge.


(Don't you think it's a little bit funny how we try to push, push, push all those things deep down..act like they don't bother us at all..then when you least expect it..BAM.. at that point it does not matter if you are in the grocery store, son's baseball game or remote Africa.. it's just gonna spill out.)


A few weeks ago I received the most amazing email...


"I have been meaning to tell you- that baby with malaria last year survived it- We did meet the mom on our second trip and she was so surprised that we remembered- Janet."


Tears streamed as I typed an overjoyed response and God quietly whispered to my soul..


"Trust me."

Dear reader, I have no witty ending for this post.. I wish I could say that was the last time I lacked faith, wish it was the last time I became angry with this life's struggles.  Wish it was the last time I raised my eyebrows and wondered if He really heard my prayers.


For now, and by now,  I mean today.. minute by minute.. I lean not on my own understanding, but rather on that one whisper from my Maker.

"Trust me."

The List..

Romantic get away for two, yes please.  Coastal Nest.. it's where all the cool kids go:)

10.  Dirt under the finger nails, 6 yards of top soil, green shoes, the smell of freshly mowed grass, birds, frogs, softball and Easter dinner  eaten under the budding apple tree.. Spring, you like us, you really do!


9.  Favorite spring trend??
The welcome return of slouchy clothes.  I LOVE slouchy clothes. Not just for the obvious reason of tummy cover-up either.. but for mostly for comfort.  I have a hard time wearing clothing that is uncomfortable.. it makes me crazy.  Truthfully, if it was socially acceptable in places other than Wal-Mart I would embrace the wear your pajama pants to the grocery store trend.. nothing is more comfy than my pj's.. but lookie here.. we have slouchy clothes..next best thing!

8.  2nd favorite spring trend??

80's clothing. The hats, floral prints, Lycra black skirts. Channeling our inner Debbie Gibson once again.

Speaking of which..I dug this little nugget up on youtube..watch it.. you know you want to..come one.

(mullets and keytars!)

  

 7.  Mommy Monday interviews this year are shaping up to be pretty epic... love.


6.  Favorite meal planning cheater item? The rotisserie chicken.  If you are ever in a hurry.. or need a quick "make Amber look like a culinary genius" meal pick up one (or dos in my case) of these little beauties.  Because some days I'm not able to channel my inner Julia Child (because I have to be available for my child(s)).


5.  Well, looks like Mitt is going to be the nominee.. Deep question number 543.  Do you really think posting political thoughts/polls/links/snide partisan comments on facebook is really going to change a person's political stance?


4.  Alone.
Some people think this word is scary.  I'm normally not really an alone person.. I like a good posse surrounding me.. but as I get a bit older (40 is the new 30..right?) alone has taken on a very new meaning to me, and let me tell you, it's not one bit scary.  In fact I kinda think it makes me a better person.


3.  A really funny thing happened to me recently, I surprised myself. 
Lila over at Bella Gets Real started training for a 12k.  I know lots of people who run, I know lots of people who train hard.. honestly I've always thought that running should be reserved for times of emergency only.. like the Zombie apocalypse or when Starbucks is going to close in 3 minutes and you need that Americano to get through a late night batch of photo edits.. you know.. emergencies.


But for whatever reason this time when I read about running..I wanted to run.. so I did.
(late at night..when no one could make fun of me) (because I just might be an awkward runner)(and I seem to have acquired some extra jiggly bits, since I last jogged)


here is the funny part.
I actually like it.
Believe me, I'm just as shocked as you are right now.


2.  Feeding the muse.
I'm in desperate need of feeding mine.. she is feeling a little starved for attention.  Isn't it funny how we are bombarded with about a bazillion images every single day but yet still need inspiration.  Actually I think the over stimulation of images for us creatives is the problem.  It's a bit of a funny thought that walking away from visual stimulation would cause inspiration.. no?


1.  Spring Fever.
I like spring, but I really love summer.  I look at spring like I look at an appetizer.. like.."yay that's nice, but I am ready for the real food now."  Spring, I'm oh so glad you joined us before July this year, you're cute and all but I'm ready for some real heat, with a whole lot of nothing to do and about 2 months to do it.


Summer + Road Trips = Amber's happy place.

Source: witanddelight.tumblr.com via Amber on Pinterest

Friends.

I love this picture. 

About a month (ish) ago I was at an event...

(Without going into too many details)

(To protect the identity of all persons involved)
(ok..mostly myself)

Honestly I was not looking too forward to this event, maybe just maybe, a person was attending I was not too keen on seeing, not totally dreading, but just that feeling of..."really I could go my entire life without seeing that person ever again and really be ok". You know that feeling, right?

I sat down...

Then a really awesome thing happened.. one of my girlfriends came and sat down next to me, not the dreaded person, but the, "I'm really glad to have known you person". The kind of gal that unexpectedly comes into your life and makes it better.

I love those kind of persons.

Then I felt safe, like I had no worries.  No matter who sat by me, all would be well.  It really is just about one of the best feelings ever.

That feeling of being apart of a friendship that has mutual respect, honesty, loyalty and love with just enough of "I'm gonna bust your arse if you get out of line."

From what I gather.. you can't get there unless you are willing to take a risk, open up, be vulnerable.

It's scary.

There are those sad times when you hold your heart out (it's a little like being naked) and the person who you are giving it to does not want it, or worse takes your heart and hurts it.  You might get it back slightly bruised.. a little smaller.. pieces may even be missing. It happens, it stings, if you choose, it could even make you bitter.. please don't let it.

Because when it's good, it's really good.  It's safe, happy, sit next to me and have my back, give me good (although not always easy) advice, share a meal, yes your butt does look really big in those jeans, will you forgive me?, yes, I will forgive you, love my kiddos, listen to me cry, share a meal, be silly,  shop, drink coffee, share a meal, say nothing for long periods of time, share a meal, laugh till Amber looses bladder control, share a meal, talk about our past, talk about the future and dream really, really big, it's super good..unicorns and squishy pink clouds kind of good. (did I mention eating?)

I have those friends.

I am that friend.

And it's one of the best parts of this funny little journey we call life.