Greetings Family & Friends,

We hope you are well and enjoying the holiday season!  We are looking forward to a season of festive celebrations with our families. 2012 has been a year of exciting changes for our family. 

This year Ashton started all-day Kindergarten at Cumberland Elementary and is enjoying it! Every day he wakes up bright eyed and ready to go to school- he’s a real morning person!   It’s been exciting to watch him grow into a little boy, exercising his independence and making choices on his own.   Ashton has made many friends at school and is beloved by his teachers and support staff.  His bubbly social personality and bright smile has made the transition to all day school much easier!

Along with Ashton, Kiera has also begun school this year.  While she missed the cut-off for public preschool by a day, we made the decision to enroll her in half-days at St. Paul’s Lutheran Preschool just a minute out of town.  This year she has had opportunity to make new friends and partake in the many creative projects at school.  She loves creative play, being outdoors, and all things pink and sparkly!

Owen, who’s nearly three years old, is gaining new skills every day! He is always zooming around the house exploring and he’s getting much better and verbalizing and communicating his daily needs.  We have been blessed with a break from surgeries and hospital visits for most of the year.  His primary surgeon said his biggest job right now is growing up! Owen loves his toy trucks and cars; he is seldom more than ten minutes without one in his hand! 

This year has been a great time for our family.  While the boys medical needs require continued monitoring, routine appointments have gone seamlessly and we have been fortunate that they have continued to thrive and grow with few medication adjustments. We had so much fun this summer playing at the beach, on the lake, in the garden, and out and about together.  We raised 26 chickens this spring and we are now enjoying a bounty of fresh eggs every day along with the hilarity of having chickens running all over the lawn during the day!   The kids really love our chickens- we even have a few that are cuddly!  And to our great surprise, Dixie (our dog) is exceptional with the chickens, she even plays with them! She is as gentle and playful with them as she is with our kids, we couldn’t ask for a better dog for our family.

We want to thank everyone for the abundance of love and support you give our family.  While we don’t get to see or talk to many of you as much as we wish we could, know you are always in our thoughts.  We wish you the warmest Holiday Season and a Very Merry Christmas.  May 2013 bring blessings, love, and peace to you and yours.

Merry Christmas,

Shelby, Sarah, Ashton, Kiera & Owen Fox



Our 2012 Christmas Card

 

 

'Oh, The Places You've Been!"

Tonight I finally introduced myself to a network of parents of children with special needs, whom I've had the pleasure of being invited to share our medical story with...

Even though many of you may know our story,  it was profound for me to redocument and abbreviate our journey for this group.  I couldn't help but think of the Dr. Seuss book, but in reverse -"Oh, The Places You've Been!"  The last five years have been surreal.  I couldn't have asked for greater gift than to be the mother of my wonderful children.  They are my inspiration and heros.

Hi Group,

I know I have taken a long time to catch up and post on here… I am thankful to my friend Hilary for introducing me to and hosting this group! While I’m not in the Rocky Mountains- I am a Mom of three miracles, two of which are rare medical compilations. 

Our first born son, Ashton has Panhypopituitarism and struggles with gross motor skills/coordination in his daily activities, as well as a range of other developmental delays.  He was born a beautiful healthy 8# baby boy and slowly regressed and was classified ‘failure to thrive.’  We struggled for years and visited specialist after specialist to try to figure out why our handsome chatterbox boy was losing muscle mass and missing milestone after milestone.  The last straw was a specialist at the Children’s Hospital that looked us dead in the eye and said, “We’ve exhausted all of our efforts, we don’t know what’s wrong with your son.” We were devastated.  It was just before the birth of our second child (a beautiful healthy baby girl, Kiera) that we were finally referred to the Mayo Clinic in Rochester, MN.  Ashton was put through the wringer- muscle biopsy, swallow study, endoscope, EMG, EKG, MRI, and an endless list of genetic blood work.  Still nothing could be confirmed to be wrong with him, but he was TINY for his age (several bars below the first percentile), he was weak and could not walk, yet he was bright and verbal.  His bright mind was stuck in an infant sized body that refused to work for him.  The only three things that were established was 1: he had a malformed pituitary, which they deemed to be un-significant since there is little data on how many healthy people are walking around with odd shaped pituitary glands.  2: The chances of having another child with this condition would be astronomically rare (Mayo Clinic Director of Genetics), we have no documentation of anything like this and no genetic markers for this.  3: His growth hormone levels were very low, but they primarily pointed this toward the ‘low end of normal’ and aimed his stunted growth to be a result of poor nutrition.  WHAT!?   Yes, I was framed as a mother that was not providing an adequate diet for her child. Despite my meticulous food journals, calorie counting, high calorie diet regiment, and a healthy properly growing sibling.  With the blessing of our endocrinologist the gastroenterologist suggested a feeding tube would be the best option for our problem.  With your consent we'll go ahead and schedule surgery.  We refused, we knew better.  They were not convinced- I was framed as a fraud.  I cried for days… if Children’s and Mayo Clinic could not fix my son- did not believe me-  what now?

Well, God had that all worked out.  During our research & development phase with Ashton, I very unexpectedly became pregnant with our third child!   A third child was not in our plan- We thought we had made a long term birth control solution after the birth of our girl!!  Like I said, God had a plan. Nine uneventful months of multiple ultrasounds and close monitoring later I gave birth via emergency C-section due to an apparent placenta abruption to our little boy, Owen. To our surprise Owen was born with a smile so big, it couldn’t be tamed.  He was born with a unilateral cleft lip and bilateral cleft palate.  Minutes after his delivery we nearly lost him, he had an unexpected crash.  He stopped breathing, his system was shutting down.  Our local small town hospital (only 7 doctors for the clinic/hospital) were amazing.  They shut down the clinic at 1 in the afternoon for an all hands on deck emergency in the hospital Operating Room.  By the grace of God, good doctors, good decisions, and great medicine- Owen stayed with us.  A last ditch effort was made- one of the doctors drilled a hole (with what I could swear was a sterile Black & Decker drill- NO LIE!) into his Tibia (leg bone) and direct injected adrenaline into him.  It’s what saved him.  Once he was stabilized they loaded him onto the helicopter and flew him to Children’s hospital two hours away. 

Twenty two of the longest hours of my life later I was discharged (after a C-section!) with insanely strict orders, but I could go be with my son.   His cleft lip & palate was addressed quickly by the wonderful staff of doctors/nurses.  They explained the immediate path, terminology & long-term plan.  Okay, but we still had no idea why they could not get him consistently stabilized in the NICU.  It wasn’t until we met with endocrinology and explained about Owen’s older brother that the light bulb clicked.  They scheduled Owen for an MRI that day- sure enough he had the identical pituitary presentation on his MRI- ectopic postuitary with a threadlike stalk.  A hormone panel was ordered… undetectable levels was the phrase I grabbed out of the whole conversation.  Everything was a blur…  “Owen’s pituitary was not producing the hormones Owen needed to survive.  We would have to supplement his hormones for LIFE, his symptoms will be unique, no two cases are the same, but we will be able to compare with others with this condition.  There are VERY FEW others with this condition.  We have NO data of siblings with this condition.”  A month of monitoring, a feeding tube, and a case of pneumonia later, Owen came home.

Through shared medical information Ashton was officially diagnosed along with Owen and in May 2010 Ashton began growth hormone therapy, his life has changed in unimaginable ways.  Treatment for both boys has been very successful. Years and loads of medical appointments later we have two Panhypopituitarism (PHP) boys and a very healthy little girl.  Through online groups we have found two other families worldwide like ours- with siblings, both very foreign (from other countries) but as much similar as different from our family.  Owen requires Cortisol, Thyroid & Growth hormone daily to survive.  Ashton requires only Growth Hormone and Cortisol during major illness and teeters on the edge of full replacement hormones… but he’s still hanging on those charts!   Since official diagnosis Ashton, at the age of 4, built the stamina and strength to walk independently.  Owen is on track with his milestones, but struggles with speech (mostly cleft related) and some mild developmental delays.  Our life is a constant balancing act of physical therapy, occupational therapy, speech therapy, cleft team appointments, auditory appointments, eye appointments, endocrinology appointments, …..appointments and more appointments.  But, I wouldn’t trade it.  I wouldn’t give one of them back! Each- Ashton, Kiera, and Owen are all perfect versions of themselves, they are perfect for them and perfect for our family….  We are the lucky few that get the opportunity to know and love such inspiring little people.  We are blessed.

Thankful Taker

Kiera and I were running errands in my three hour time frame in the afternoon- after I pick her up from preschool and before Shelby has to leave for work at 2pm.  We had already made a couple stops and were in a time crunch. We jumped in a checkout line with a young woman with a few items already unloaded onto the belt in front of us.  Score! This should be quick... or not.

I realized once we were already in line for a few seconds that the girl in front of us was checking out using her WIC checks. Her items were all neatly arranged by check- she had done this before, unfortunately the cashier had not.  I realized we were in this for the long haul.  Another cart had already lined up behind ours, there was no escaping to another line.  This was going to be awhile.

It was obvious that the young woman was mortified that the process was taking so long and the people in line behind us were outwardly and loudly expressing their dissatisfaction with the lengthy checkout line.  The young woman was well dressed in current clothing... she didn't look like she 'needed' to be on government assistance.  I felt bad for her and gave her a quiet smile when she dared to glance my way.  I knew full well what she was going through...

A few years ago it was our family.  We just had Owen and our world turned upside down. Our bills were mounting and our options were few.  From the perspective of others who didn't know our situation and just 'knew' us from casual interactions or driving by our home now and then we probably looked like 'opportunists' praying on government support programs. 

Sure, we are homeowners- we had a new home on 40 acres, we were dressed nice, we had nice vehicles, nice things... and then we had a child born with severe medical complications.  Our financial security blanket became threadbare. A month in the NICU burned up Shelby's vacation days and we were using Family Medical Leave days (those are without pay), we racked up miles on our cars with $4/gallon gas, eating away from home....  After we got Owen home, in the first year he had 52 medical appointments either in St. Paul or at Mayo.  That's 52 days of travelling, eating out, arranging childcare, schedules, days off, ...and the list goes on.  The things we treasured were just that, things... things that we mostly owned and things that we owed money on. Things that we would lose if our situation was to become our new life. We had no choice, we had to put our pride aside and ask for help...   

With the help of the social worker at the hospital we were set up with a mileage reimbursement program for qualifying families, we used WIC checks to help with the grocery bills, we used Badgercare for our secondary insurance to cover the co-pays for medications exceeding $1800/month plus the expensive feeding equipment Owen would need for his food pump the first year.  We were taking... Sure, when you looked at our house, our cars, our clothes- we didn't look like we needed help, but we did.  We needed help so we didn't lose what we had worked so hard for.  It was humiliating and embarrassing to have people in line behind you at the grocery store looking at you with contempt. How could I explain to them our need? Was I suppose to 'look' poor? It was tough to live with those looks, to accept that those people will never know how much you really did need the help. And it was hard not to feel guilty as I drove home in my new Grand Prix to my beautiful home to unload groceries I just bought with my WIC checks.  The roller coaster of emotions was exhausting... I deserved those 'things' I worked for.  We spent hours upon hours building our home with our hands, I worked as much as our schedule allowed and Shelby worked days of overtime to buy the car & truck we wanted.. we earned those things... and now the very things we earned were at the center of my complex.  I felt bad for owning nice things and still 'needing' from others.   I suppose our situation is quite unique, but I am certain it's not singular. 

There are other families just like ours, taking.  Not because they are leeching the system by driving their Cadillac to the food shelf, but because that Cadillac is the one thing that they have left from a life that took off in a direction faster than they ever could have imagined.  I try to give people the benefit of the doubt and remember those times when we needed...  that well dressed young woman standing in line with her WIC checks.  I'm sure she needed the help, just like us then.  Everybody has their own degree of necessity, who am I to judge?  She only had a few things set aside that she would have to pay for herself- nothing extravagant.  I noticed a bottle of nail polish and thought- good for you! ...you still need to feel normal and have some things for yourself!

The good news is, thanks to those programs- we've made it through the toughest days and we don't need them anymore.  I will never blame my children for the new normal we have found ourselves in, we are as rich as we always dreamed... rich with blessings. While being rich with blessings doesn't pay bills, it is what our world is filled with.. and that is what we truly need.

Financially we're not making a killing, but we are making it day to day.  We don't drive those nice vehicles anymore, we sold them.  Our budget doesn't flex enough for a vehicle payment, so we downgraded to a couple midgrade vehicles that work for us. We are doing our best to finish projects on the house with supplies that we already have on hand or ones that only require a small budget and our own skill and labor.  We've downsized some things- this year we sold our gigantic golf course lawnmower in favor of a nice used lawn tractor.  The surplus cash went to bills.  Our five year plan includes a carefully managed monthly deficit, until I can get back to work full-time someday. We are becoming masters at creative finance and carefully scrutinize every opportunity to turn one dollar into two.  We also remember that you have to do things to treat yourself now and then.  We dine out now and then, catch a movie, take family day trips to local attractions...  little things, little treats.  We haven't taken an exotic/destination type vacation since our Honeymoon, but maybe in time that will happen again.  Shelby's vacation days are still primarily used for doctor appointments, but this year we've been able to squirrel some of those for actual vacation breaks for short weekend trips! We're getting there...getting where?  Where are we headed? ...I think we're on course for a happily ever after, just hit some road construction and detours along the way.  We have been thankful to have found everything we need along the way to keep us moving in the right direction...

Irish Blessing:
"May God give you... For every storm a rainbow, for every tear a smile, for every care a promise, and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song, and an answer for each prayer."

Scary Stuff!

Halloween is scary stuff... and I'm just not into that.  Over the last several years I have backed away from the very grim and scary side of the Halloween holiday.  I haven't been to a haunted house/haunted trail in over ten years. I just can't get into houses smeared with blood and severed body parts. Yes, it's defiantly scary and isn't that what Halloween is about? No, not for me.  It's actually quite terrifying to me that we let our own minds go into this sick place to 'celebrate' a holiday.  Why do we need this extreme horror for excitement?

The whole blown out of proportion gore is scary to me because that horror is already real.   Have you watched the nightly news, picked up a paper, or skimmed the headlines on your browsers front page?  I'm over it. I don't need more!  I don't want any part (or body part) of it!  I am as guilty as everyone... I use to read lots of horror books, watch hack-em-up scary movies, and go to all the haunted houses too.  But, I think our culture has upped the ante so many times (how many 'Saw' movies are there now?!) the whole Halloween Holiday has been tainted with horror so extreme we hardly wince at what we see on the daily news. Heck, you can buy all the fake blood, guts and gore gear you'll ever need on a shelf at Walmart!  People are murdered everyday, people commit suicide everyday, people do horrible things to children everyday- WHY do we need to replicate these horrible deeds for entertainment?

I do enjoy the spooky nostalgia and history that goes with Halloween...  werewolves, vampires, ghosts & goblins- the 'spooky' part or the festively fake.  I don't mind a cauldron full of witches brew, a good game of ghost in the graveyard, or a spooky ghoul poking out from behind a tree. However,  I find no joy in the Halloween 'fun' houses full of children's bloody hand prints smeared on walls, children dressed up as murder victims/undead, adults hacking up bodies, severed body parts dangling from ceilings, and fake blood dripping from impaled bodies is unbearable. Even more unbearable is the inevitable questions my children will ask like, 'What is he/she for Halloween?' While we are walking past the undead child with head wounds in perfect theatrical makeup on the street.  Truth is I am doing my best to not have to answer these questions.  I don't want to let them know what a horrible world we live in, that the kid walking down the street is just pretending to have been butchered and dead because that really happens sometimes- how messed up is that?  I can't even think of painting my child dead for fun, it's unimaginable to me. They'll learn about the real horrors of our world soon enough. So, until that day arrives we participate in 'safe' trick-or-treats in the daylight hours or at relatives homes, church/school centered parties, and G rated costumes.

Anyway, this is what's been on my mind and all over my Facebook news feed. I hope you all enjoy your Halloween in a fun & festive way!

Be 'four' my eyes..

Dear Kiera,

I can't believe I could love you any more than I do today, yet every day you prove me wrong.  You are a wonderful and precious little girl... or little 'Squirrel,' as we would say.  Your nick-name has stuck.  Although, I try not to use it as much in public... I've gotten some strange looks! You still own it, and it's just as silly as you.  Before my eyes you have turned four years old.  It's so hard to pinpoint how we got here, it truly feels as though we brought you home yesterday.  It's a good thing that's not true, because your hair would be nearly as pretty as it is today!  I do miss you being my baby girl, but being my little girl is pretty amazing!

Everyday you do little things that make my heart smile.  On your birthday, Ashton gave you a present. He and Daddy wrapped a 'Birthday Barbie' for you and you opened it first thing in the morning.  You loved it! Daddy and I brought you to town for lunch and to pick yourself out a small birthday present at the toy store. We've made it our little tradition to just take you- with Mommy and Daddy all to yourself.  But, this year we included your sweet cousin, Nikki, in on our trip.  You love her so much, we only thought it was just perfect to bring her along.  You requested pizza for your birthday lunch, so we brought you on your first trip to Pizza Hut!

After lunch we went to the toy store in the mall.  Even when we gave you complete freedom to choose a toy for yourself a funny thing happened.  You picked out toys for Owen and Ashton.  You brought us a few toys and said, "Owen would really love this or Ashton would really love this."  There were many toys you liked and played with, but nothing you HAD to have.   I grabbed you a new watering can & gardening tools for our outdoor adventures, but in the end you decided you really didn't need anything.  So, we paid for the couple treasures I snagged for you and moved on to get the groceries.

Even at the age of four, you are selfless.  You had the whole toy store at your fingertips, but chose toys for others.  Your desire to give was greater than your desire to get.  I admire you for that, many people 20 times your age still have not learned the joy in giving.  I hope you're heart will always stay this way.  You showed me that you understand you don't have to have everything, when you're happy with what you have.  God bless your little heart.

You are still our 'girly girl'-  you're princess dolls own more dresses than I do and you have more dresses than your dollies! You gravitate toward anything pink, princess, or sparkly.  But, you are no diva!  You love to be outside, to get muddy, catch frogs, catch bugs, chase your chickens, and ride your four wheeler! You're always zooming in and around the house doing something!  For months you told Daddy that you wanted a pink princess four wheeler for your birthday.  When he brought home a green one and black one, you told your Grandpa Jerry- "I wanted a pink one, but Daddy got a green one.  Awww Nuts!"   We didn't want to let you down, so I ordered a pink Fox Racing sticker kit for the black wheeler... It has been properly girlified and there's no question who it belongs to! :)

We had a wonderful birthday party for you.  Nikki & I put a few hours into your cake and had the You Tube video on repeat! It turned out beautifully! We had great weather and great family to celebrate with! You added a few more dollies, sparkly things, and dresses to your collection and a bit of birthday cash to boot!

I asked you what you want to be when you grow up, you told me a farmer girl and a teacher. Your first answer didn't surprise me a bit, but the second career choice is a new.  When we asked what you would teach, you said 'Letters.' To this your Daddy sarcastically replied, "Great, because everybody loves their English teacher!"  hehe.

Oh, Squirrely! I could go on an on about you.  You're so fun and I love you so much.  I am so proud of the little girl you are and am thankful that I get to be your mommy.  God couldn't have done any better, you are everything I dreamed of. 

I love you through and through.  Yesterday, today, and tomorrow too!
Mommy

Insurance Coverage- the normal nightmare

Letter of complaint to the State of Wisconsin Insurance Commissioner

Please describe your problem 

I am writing in regards to the insurance coverage for my son, Ashton Fox.  Ashton was born with Congenital Hypopituitarism and teeters on the edge of PANhypopituitarism. His pituitary gland is not capable of producing proper levels of hormones for his body to grow and thrive.  This condition was diagnosed via MRI and extensive lab work by Endocrinologist Dr. -      -- at the Mayo Clinic in Rochester, MN.  Ashton has been her patient for 3 ½ years. Ashton participates in semi-annual lab draws to ensure that his hormone levels remain at an adequate level for his general health and well being. His condition requires extensive monitoring, as well as replacement hormones to supplement what his pituitary gland is not capable of producing.  His replacement hormones (growth hormone) requires a subcutaneous injection every night as directed by his endocrinologist.  On June 26^th I received a phone call from Ashton’s specialty pharmacy indicating that our secondary insurance (WI Badger Care, Forward Health) declined to cover Ashton’s prescription.  I immediately contacted our doctor who began the appeals process to have his life sustaining medication covered.  On July 3^rd the proper appeal paperwork proving medical necessity was sent from Dr.            office to Provider Services.  Since July 3^rd, I have made countless calls to Member Services only to get the run-around regarding the status of the appeal for my sons medication. Each time I have called, I got a different ‘answer’ to my problem, that all effectively leads to a dead end. Finally last week I was told by Member Services to contact the Great Lakes Consortium, as they would have the power to overturn or quicken the appeals process.  I called immediately at 2pm in the afternoon on Thursday July 12^th. I waited on hold for 35 minutes- as long as I possibly could without attending to my children. I called again today and waited on hold for countless minutes, I’m beginning to feel that it is yet another dead end.  Dr.            and her nurses have also been relentlessly contacting Provider Services to find out why Ashton’s prescription is STILL being denied.  Today Dr.           again contacted Provider Services and was told that the committee has yet to understand the need for Ashton’s Growth Hormone medication and that he would not be approved until further proof be submitted. 

This situation has escalated into an unacceptable level.  Our primary insurance (Blue Cross Blue Shield of MN) sent us a letter three months ago stating that Ashton’s medication was infact deemed medically necessary and has been approved for another year-  they required LESS proof than the State of Wisconsin about Ashton’s condition, yet BCBS could validate his condition and approve his medication because it IS MEDICALLY NECESSARY.  Both myself and Dr.              office at the world renowned  MAYO CLINIC IN ROCHESTER, MN are aghast that the State of Wisconsin cannot accept the years of documentation, official diagnosis and continued monitoring as PROOF of Ashton’s need for Growth Hormone. 

You see, without growth hormone Ashton will cease to grow, he would infact have a condition called pituitary dwarfism- as was the case up until around his 3^rd birthday when he was finally diagnosed. Ashton could not walk until he was four years old because his body lacked growth hormone during the pivitol growth periods during infancy.  Due to his congenital pituitary malformation his muscles and bones did not develop properly, he was several bars below the 1^st percentile in height and weight.  He did not have the proper hormones to grow and thrive. This year because of his successful growth hormone treatment he finally made it onto the growth chart! Today Ashton is 5 ½ years old and still quite far behind his peers in his mobility, he cannot run and stumbles a lot- but due to uninterrupted growth hormone therapy he is slowly catching up.  He has gained weight, height and muscle mass and is nearly the same size as the majority of his peers.  This is the first time in the last three years that his growth hormone HAS been interrupted (15 days now) and I worry everyday what is happening inside his body.  Are his muscles degenerating, is his linear growth being stunted, is he experiencing any physical symptoms of lack of hormones??  It makes me sick. 

I am sick to my stomach that his coverage STILL being questioned and he is STILL going un-medicated. I’m even sicker at the thought of going through this same process when our youngest son Owen needs his prescription filled.  You see, Owen suffers from congenital PANhypopituitarism and requires the same hormone replacement as Ashton IN ADDITION to thyroid medication and steroid replacement.  Owen WILL die if fully un-medicated for any length of time.

I realize my sons conditions are astronomically rare, we’ve been told that a million times by many specialists. I STRONGLY URGE you to research and understand the profound effects the diagnosis of hypopituitarism and panhypopituitarism has on the health and well being of children.  It is essential to provide a streamline and efficient approval process for children with this diagnosis.  It’s unfortunate that their condition is so misunderstood by the State of Wisconsin, even when provided with a plethora of documentation regarding the diagnosis, that you can continue to delay coverage of life sustaining medications. Shame on you.

I look forward to your prompt reply and am willing to answer any questions you may have regarding my sons conditions and medication needs.

Sincerely,

Sarah J. Fox

How would you like this problem resolved?

I would like the above described issue resolved without delay by approval of the appeal submitted by Dr.                   from the Mayo Clinic for the growth hormone prescription for Asthon Fox.  I would like to see the process improved in such a way that when applying for coverage for our youngest son that this type of delay and appeals process can be avoided for those with clinical diagnosis of hypopituitarism and panhypopitiutarism.

Coming out of our shell

Slow and steady, the turtle wins the race... if you keep up with my blogs you are well aware that this is a sort of mantra for our family.  We strongly identify with that poky turtle that just won't quit. He knows that as long as he keeps at it, he'll win in the end.  It's moments like we had this afternoon that I really feel like we are winning. This afternoon wasn't a turning point, a life changing day, or any particular celebration. This afternoon was just part of a normal day, or what I always wished a normal Summer afternoon could be for our family.

On a whim, this afternoon I invited my niece & nephew to go to the beach with me and the kiddos. I woke a reluctant Owen up from his nap early, made a few peanut butter and jelly sandwiches, got the kids in their swim suits, and packed them for the beach.  I have to admit, I was somewhat scared. We never really tried this as a family and I was attempting to undertake the activity sans Shelby.  However, I can't deny the incredible help that my niece & nephew (Nikki & Skyler) are- they're pretty much amazing kids!

Activities like going to the beach, the park, or even the grocery store with our three kids were once so overwhelming that I just shut down and chose alternative activities for us...  and then things changed.  These things don't happen overnight in our house, they happen slow and steady- and then on a day like today I just can't believe how fast it really happened.  Last month Owen's mobility presented many of the same challenges that we faced during the first four years with Ashton. Owen's need for constant assistance to walk independently was often difficult to accommodate in solo parenting situations- especially when also being accompanied by Ashton & Kiera for out and about activities. Kiera is very helpful, is a fantastic listener and quick to keep up, but is a busy almost four year old. Ashton does still require some assistance with the day-to-day things. He might just need a little extra help with his clothing, shoes, or a hand to steady himself on rough terrain, but all the extra needs combined overwhelmed me.  I just couldn't wrangle everybodies needs adequately enough to actually enjoy our chosen activity.

Today there was a shift. We all made it to the beach, the playground, had some snacks and made it home in one piece. There were no tears, no fits, just fun. Ashton & Kiera are both enjoying the water and navigating it without much assistance at all. Kiera is certainly a water baby like her Mama. She loves the lake and has not a single ounce of fear in the water. I got a chance to work with her more on her swimming skills and she even jumped off the platform into the water today! Ashton, like his Dad, is learning to love the water. He has never enjoyed the water as much as this year and today finally started dunking himself and telling me how much he loves to go underwater! Owen adopts almost the same sentiments as Kiera for the water, however he's not quite ready to tromp off on his own yet. Who can blame the kid, he just started walking this month!! He is excited to enjoy the water with somebody else, his big smile never leaving his face.

Today was a day that I think other families might take for granted, but here it's a reason to celebrate.  After the kids went to bed tonight, I just couldn't shake the feeling of real happiness. Having a normal day might feel mundane and might not be much fun, but here it's an amazing feeling to enjoy a few moments without medication schedules, occupational, speech, or physical therapy appointments, doctor visits, insurance calls, dentist appointments, eye appointments.....  and the list goes on.  Today made me realize just how often these little moments are starting to happen. We are making real memories as a family.  We're finding our own balance and siezing the opportunties that we're given to fill the moments with stuff that matters, even knowing it might not work out perfect.  We're willing to take the risks to make memories.  I'm remembering to step back and breathe and just be in that moment.  This afternoon reminded me of the hot Summer days that my Mom and Aunt would take us to Sand Lake in Sarona to swim and play the day away.... it wasn't complicated then, just fun. It makes me so happy to know my kids will have that too. <3

It Happens

Nobody ever asks you, "when did you start walking?" or "when did you stop sleeping in a crib?"...  in an adult conversation these would be strange questions to ask to another adult, yet as parents we shout from the rooftops when our children accomplish similar milestones and we don’t think twice about criticizing so-and-so’s kid for not being able to do something yet.   Or worse, we get down on ourselves about what our kids are not doing yet.

Now, I don’t want to lessen the importance reaching these milestones or reduce gratification that we and our children receive from mastering these skills… but as a parent of special needs children I frequently enjoy a private laugh and eye roll when parents of ‘normal’ kids get worked up about their own children not reaching a particular milestone on time.  I do believe the lack of some skills is in fact a result of inadequate teaching/guidance. It happens to all of us, even I am guilty of this!  The process of teaching Owen to use dining utensils is proving to be incredibly challenging/frustrating and at times easier to let him just dig-in without intervention!  I’ve laxed to the point of hoping that he will learn from social example and try to intervene when he seems most receptive.  Sometimes you have to just do what you can to retain your own sanity.  But, for the most part, your kiddo will learn-  it’ll happen.

When Ashton was born we had no idea that he wouldn’t walk until after his fourth birthday, we didn’t know he would sleep in his crib until he was three, we didn’t know it would take until his fifth birthday to become fully potty trained- but, these things finally happened.   And believe me- we shouted from the rooftops when these things did happen!

These things may not happen in the order in which you prefer or may come with extra help, Ashton walked with a walker before he ever attempted walking on his own.   Owen ate through a tube for over six months before ever enjoying his first mouthful of real food and only then was he able to with the aid of his palate prosthetic.

The only person that gets hung up on these things is you. Yes, society, doctors, your closest friends, and family may put undo pressure on us as parents to push our children to fit onto some sort of graph and meet their milestones in perfect sequence, but it doesn’t always happen that way- and that’s okay!  Those milestones that you worry yourself to death over will all be met by your baby in their own time and in their own way. Maybe instead of walking on their feet, they’ll walk using wheels or instead of mastering silverware they’ll master their drawing skills first.   I’ll never stop hoping, trying, and pushing my kiddos to do better and do the things that they need to, but I quit getting hung up on the time tables long ago. 

Tonight Ashton has his pre-school graduation, he will walk up to get his little diploma- just like the other kids. There was a time when I didn’t think this would ever happen, but tonight It’ll happen.

Love, Hugs & Prayers to you all,  Sarah

Beyond the rainbow...

Do you remember that time when you were young (late teens) when all you could see in your future was rainbows and life was anything you made it to be...

I recently went through a string of bad days, not just bad days- pretty darn bummed out crummy days. It really hit me hard considering my usual positive disposition and sunny outlook on life. These crummy days mentally put me in a crummy place. I'll admit that for one full day I pretty much lost control and years of imploding came to a emotional explosion. I realized that the person I am today was not the person I thought I would be when I was 18.  Suddenly I wondered, is who I am today the person I want to be or had this life just happened to me and now my future a set course?  These were not questions that could be answered in a single day, it took me years to make the decisions that lead up this type of deep self reflection. So, with my brain completely overwhelmed for most of that day I cried.  If I was able to physically expel out the frustration and overwhelming sense of loss of a life I had once planned through tears it would have happened, but it didn't... It took a few days for my brain to sort my current conundrum. Did I mess up? How in the world did I get to this place... am I happy here?

When I was 18 I had a handful of college acceptance letters and dreams of becoming a teacher or engineer.  With my talents I would change the world-  I was actively being sought by one college and the army for my exceptional scores on the ASVAB for my mechanical knowledge. Engineering and mechanics always intrigued me and I always thought being an engineer, building/designing and using my creativity in ways to improve peoples lives.  On the other hand, I always wanted to teach. I wanted to teach children- inspire the greatness each one of them posses.  I had aspirations of travelling everywhere, getting married, working nine to five, having relaxing evenings with my husband,  having children, house, car, not a problem in the world... just a beautiful life.

My string of bad days and eventual meltdown had me looking at my life all wrong.  It's true, today I am not the person I wanted to be at 18, I'm not the person I want to be when I'm 50. I am doing what I want right now, for the most part.

I want to be a million things, but I don't think I really want to be a teacher or an engineer anymore. They're nice careers and I'd probably be happy doing those things, but they're not careers I'm currently enthralled by. Why is this?? Here's a shocker for ya- I am not the same person I was at 18.   I doubt any of you reading this are...  there's a reason for that. It's not because I let my dreams go, because I chose to marry young, or because I chose to get my marketing degree instead of an engineering one. It's because we all change, we all make choices, we all do our best to get to where we want to be- I've realized that place where we want to be is a moving target.

When I was 18 I was Dorthy Gale looking in the sky gazing at a rainbow. All the dreams I had then were what I thought would get me beyond the rainbow- where skies are blue and the dreams that you dare to dream really do come true.   The problem with that was, at that time I only had a vague perception of what my dream was, what I had heard of- a land that I heard of once in a lullaby.  This place is where I thought I wanted to be and I'm betting it is a nice place to be today, but it not for me.  Somewhere at the beginning of my trek on the yellow brick road, I went off roading. I made a choice to drop out of the University program and enter the neighboring Technical College, I graduated with my marketing degree, I married my high school sweetheart, we built a house (not in that order), we chose to start a family, and now have three babies. I work from home, my husband works nights, my kids are not the kids I saw in my vision at 18... If this ending had been in a choose your own adventure book for my 18 year old self, I probably would have risked jumping into the abandoned well in hopes of Lassie rescuing me.

Yup, my life is WAY off course from my original plan. The flaw with my original plan is that it lacked the proper passion. It lacked the guts and gusto to get me to that place, it was not meant to be. If all Dorthy really wanted to do was go home she would have dreamt a way to click her heals three times in a more timely manner and she would have quickly been ushered home by a band of elvish people.  Instead she stayed and made choices that took her on a fantastic journey through a beautiful dreamland. Not all the choices she made were good ones- some came with their share of setbacks, but some had the most wonderful outcomes. I suspect the dreamland that Dorthy fell out of the sky into was not exactly the dreamland she pictured when singing 'Somewhere Over the Rainbow', but it was perfect for her right then. She was instrumental in helping the Lion find his courage, the Tin Man find his heart, and the Scarecrow find his intelligence.  She may not have consciously realized it when she made the decisions to continue to stay in her dreamland that it would take her longer to get home, but she pressed on and eventually found her way home.  But after visiting a place like Oz, home would never be the same and she would be forever changed by her experiences.

And that's what happened folks. Experiences in life change you, they shape you, and make you into a person you're not. But that's not a bad thing. After pivotal experiences in your life, you will never be the same person you once were- it's not possible. And the chances of the new person you've become wanting the exact things the old person you once were is nearly impossible. So, where you are now is part of where you are going, but you'll never get there by being the person you are today.

Life changed me, I'm at peace with that. I'm happy here. Cheers

Happy Birthday to my blue-eyed baby...

Happy Birthday Ashton!

You're my big boy now... where in the world has FIVE years gone? I really can't even wrap my head around the fact that you are growing so quickly! You were my baby for so long and now- just in the last year you have shot up into a little boy. Your blue eyes sparkle just as bright as the day you were born...  I still can remember my shock in the delivery when I was told that you had blonde hair and blue eyes! I couldn't believe it- I was assured that your ice blue eyes and golden blonde hair would change after a few months! I never imagined having a son with such opposite features from his parents- the fact is, today I couldn't imagine you any other way.  Your hair has darkened some, but you still sport the small white-blonde streak of hair on the top of your head. I think it just may be your birthmark. You are Ashton Othmar Fox, our charmingly handsome boy with eyes that sparkle as bright as your personality. You incredibly sweet and proud of your name, as you should be.  It's a strong name for such a little boy, but you wear it well. You are always sure when asked your name to tell people your full name- it's pretty cute when you say, "I'm Ashton... Othmar... Fox!". I do fear that someday you won't like your middle name, but I hope you are as proud of it in the years to come as you are today. Your Daddy and I were very proud that you would share a name with your Great Grandpa Fox, he was a good man to be named after.  I'm sure your Daddy and Papa Fox will tell you all about him someday.

The last year has been all about new experiences for you. At the beginning of the 2011, you weren't yet able to walk on your own. You required mobility assistance from those around you with all of your activities and then the assistance of your walker to get where you needed to go.  Years of undiagnosed pituitary problems took a tole on your young developing frame and muscles. We are so thankful for the medication, hours of physical therapy and the enlightenment of your specialists and doctors that has brought you new life. In 2011 years of heartbreak and struggle were left in the dust with your walker.

This year you not only learned how to walk independently, you learned that anything is possible with 'Ashton Power!' It's no surprise to me that you love your superhero toys- they have special powers, just like you. In the past year you've enjoyed so many activities in a whole new way- all by yourself! While you let us tag along for fishing trips, family events and day-trips to new places, for the most part you can get to where you want and explore as you please.  It's been a real treat to watch you explore your world on your own.  Your determination to conquer all has come with it's share of head-butting too. It's hard to take four years of hand-holding-help out of you... "You CAN do it Ashton, just try." I can't count how many times I've said that over the last year. The good news is, most days you do try and succeed. Sometimes you don't and you get frustrated and then very vocally tell me, "MOM, I'm SO Frustrated!"  We work through those moments and keep moving forward :)  In the last year with Ashton Power you conquered your struggle with mobility, the potty, climbing, independent activities, jumping and so much more.  We've still got areas to work on, but you're a good sport and try, try, try.  You're not as fast as other kids your age, but that's okay- it doesn't matter who wins the race as long as you finish.

Keep your head up and keep trying, baby. You were my original inspiration for our family mantra- Slow and steady, the turtle wins the race. This year you have won SEVERAL races... you even out-run me some days! You've given me so much love and hope in the past year,  I can hardly wait to see what the year to come might bring.

Happy 5th Birthday Ashton!

Love,
Mommy