Two-day's News: Happy Birthday Owen

Dear Owen,

Tomorrow you turn two years old- where has the time gone? The last two years have whizzed by us and before my eyes today is a handsome, vibrant little boy- not a baby. When you were born we were bombarded and overwhelmed by the things we were told that were wrong with you.... your mouth, lip & nose didn't form right and you had a cleft. You couldn't eat from a bottle- instead through a tube into your belly because your lip didn't work right and the little muscle at the top of your tummy didn't work right, you couldn't fight illness by yourself, stabilize your blood pressure, control your growth because your body would not produce the hormones to make you better, you couldn't see properly because your eye muscles were too tight, your heart didn't beat quite right because you had a hole in it...

What all the doctors failed to tell us- was everything that is right about you. There is nothing wrong with you my sweet boy, everything about you is perfectly right. You are the most perfect Owen your Daddy and I could have ever asked for. What the doctors didn't tell us is that you are tough and you would fight, you are hands down the strongest boy I know. You are strong in brute, but even stronger in heart and courage.  In the minutes after you were born, I was lying on the operating table and you on the cart next to me- the nurses helping you breath. All I wanted was to touch my tiny boy before the doctors whisked you away to board the helicopter. I reached out and you didn't just let me touch your hand, you held mine.  In the most difficult moment of your life, you hung on. Your tiny fist squeezed my finger.. you let me know you were strong and would fight. You've had more doctors appointments and surgeries than most people have in a lifetime, not once has it set you back.  You've greeted surgical staff with smiles and your charm. We've had our share of long days and nights at the hospital, but you always pull through and defy the odds.

The doctors didn't tell us how handsome you are. You were born with a smile a mile wide, beautiful hazel eyes and a head of thick sandy colored hair.  I'll never forget how scared I was before your lip surgery. I was afraid I would never see your BIG beautiful smile again... no surgeon has taken that away from you. Your hazel eyes, big smile and heart melting 'hi' radiate beauty and charm.

The doctors didn't tell us how amazing you are. Your birth has pulled our family closer together than I ever thought possible. Your incredible strength and endurance has inspired pure love, persistence and courage I never thought possible. You have enabled me to face my own fears, to not settle for less than what's best for my family and to love beyond what I could ever imagine.  You personality is so endearing- you have a quiet charm about you that easily warms hearts. Even at a young two, you have a strong bond to your brother and sister. You squeal in delight when you're included in their play & games and you defend them and express compassion for their hurt.

Two years are behind us and all of those things that were 'wrong' with you are now right. You eat just like every other toddler, the hole in your heart closed, your medication keeps your hormones in check, your lip & palate have been closed, your eye muscles have been moved and you are the proud owner of a very stylish pair of glasses.  Owen, I never want you to think there is something wrong with you- because there is not. Only a stranger could lead you to believe such a lie, because anybody who knows you knows better. They know the strong, handsome and amazing you are.  They know what you told me in the first moments of your life- everything's going to be alright.  I love you so much Owen, Happy Birthday!

Love,

Mommy

Holiday Greetings Family and Friends,

Again, it’s been a busy year here at the Fox home. We’ve had a year filled with milestones and unforgettable memories. The kids are growing up fast- Ashton will turn five in February, Kiera turned three in September and Owen will turn two at the end of the month.

This year Ashton began to walk! On April 20^th, 2011- just a couple of months after his fourth birthday he left his walker in the dust and began to walk independently. It was a momentous day for us! Years of struggle and heartache were left behind with his walker. In September he began preschool and has never looked back. He is excelling and enjoying every minute of his new found independence. He really enjoys school and has so many friends! It’s been a tremendous year for him and we’re so proud of all that he has achieved.

Kiera is a very busy three year old! She is always busy creating and playing, she seldom sits still. Kiera enjoys the outdoors as much as we do! She spent nearly every day this summer playing in her pool, running around in the yard, on her swing set, in my garden or out in the garage helping Daddy fix things. The winter weather has only slowed her down enough to put boots, a jacket and hat on! She’s very bright, has outstanding communication skills and her personality is so sweet. She certainly is my little helper. She’s constantly underfoot and willing to help out any way she can. She adores her brothers and helps them out often.  Her and Dixie (our dog) continue to be an inseparable duo.

Owen has had a steady year. Every week we invite his physical therapist and his speech therapist to our home to help us with new tips, tricks and ideas for building on his abilities. Owen is slowly and steadily meeting his toddler milestones- while he is not walking independently yet, he is very active and cruises around the tables, couches and behind his walking toys. Owen is always all smiles and continues to develop his vocabulary.  In early July during his routine eye exams we found that he needed glasses. We were very lucky to find Miraflex brand eyewear for children-  his glasses have been tested by bumps, tosses & torture and they still have not needed a single repair! Medically we are letting Owen grow-up! Our craniofacial surgical team doesn’t see any need for surgery for another year- and we’re happy with that!  We’ve switched all of his endocrine medical needs to the Mayo Clinic in Rochester. The move was a little stressful, but now we are able to combine appointments for the boys and reduce the hours spent on the road. Our trips are now only three to four times a year!

The little ones have easily filled the days for us over the last year and we’re not complaining. We are getting better at being outnumbered! It’s a lot of planning and prepping to get all three of the kids out of the house, but we do! We were able to get the kids in the boat a few times this year; we visited the animal park and attended many family gatherings. Most days we’re lucky and can round up some extra help- and we are very thankful for those who volunteer!! Shelby and I were fortunate to get a few days off in July! We were able to hand over the reins to Grandma and Grandpa Fox so we could travel our favorite fishing spots in Canada. It was a wonderful trip and the weather was perfect! ..oh, and I caught ALL the big fish of the trip!

It’s been a great year and we’re thankful for all of the memories we’ve made and look forward to the year ahead. These last few years our time and focus has been on our children and the extra effort it takes to raise our unique family. We’ve neglected some of our personal and social relationships as a result. We want you to know we are thankful for your prayers, well wishes, love and friendship in 2011. We couldn’t do it without you.

May you have a blessed Holiday Season and Happy New Year! Love & Hugs Always,

Sarah & Shelby Fox Family

The Look

It's not 'The Look' your probably thinking about... It's not the look your child gives you when they don't want to eat their dinner, it's not the look you get from your spouse when you ask them to take out the trash, it's not the latest craze in fashion, it's not a look you see often- unless your me.

I got 'The Look' several times today on my solo trip to the hospital with Owen. It's the look that people exchange at a funeral- a half smile on a sad face. It's the look of sympathy and pity, eyes pleading for your smile in response...  like they just witnessed your dreams slip to a far away place and want to say, 'sorry.'  I'm sure the frequency was somewhat increased due to his unruly nature today, but when stricken with that look I feel helpless. One 'Look' can have me teetering on the edge of tears or start randomly blurting out a laundry list of Owens recent achievements- like I need to prove his worth through the his skills and abilities to a complete stranger.

I hate that look. I never want my babies to see it, to know that somebody feels sorry for me because of their challenges. As they get older I don't know how we'll shelter them from it. I suppose we can't. We choose to celebrate the activities and skills our children CAN DO... the things they can't do are just hurdles for now- we'll get there! I assure you our dreams of  a perfect family and healthy successful children are not lost, they are living, breathing and thriving! While those dreams have changed course a bit, they are still very alive and well.  Until then, if you see a family like ours out and about don't look at them and mourn the little things lost, give them a BIG SMILE, cheerfully greet them and celebrate the blessings that they have been given.  


Love, Hugs & Prayers,  Sarah

Weighing the possibilities..

I have to admit- my health, weight and working out are not usually on the top of my list of things to talk about, but they are an important part of the list regardless. I decided tonight to blog about it, because just like all of the other subjects I write about- it's one that's on the tip of my consciousness as of late.

I've never been excessively heavy, but certainly have been overweight.  I've slacked off for the years prior to us starting a family.  After high school I didn't watch what I ate, I didn't exercises regularly and I didn't mind. I was comfortable.  That was a big mistake.  While pregnant with Ashton I tipped the scale over the 200 mark! For the last four years (since Ashton was born) I have been on a journey to seek my inner health nut and whip my behind back in shape. So far I have had moderate success and have lost over 40 lbs since my peak, I have 15-20 more to go before I'll really feel good about things. Like most journeys, there have been a fair share of pit stops and pitfalls.  Between three pregnancies and the weight loss/gain cycle my closet is a disaster!!!  I know this journey is forever long, it's a lifestyle I have chosen for myself. I can tell you the caloric value of nearly all foods and the proper serving size- to be honest it borders on obsessive. Losing and maintaining proper weight is mathematical to me... calories in - calories expended = net loss or gain. You can't cheat it, it's a proven formula. You can however add exponential value to the variable by choosing more nutritious foods over ones that are filled with carbs , fat & empty calories.

Last year with the death of my Mom, I had a reality check. She died of heart failure at the young age of 52. My Dad is 64 and has had two heart attacks and a quadruple bypass. No immediate relative paternal or maternal has lived past the age of 70... CRAP! 

This factoid rolled around in my head since September 2010. It wasn't until September 2011 I spewed it onto our family doctor during my yearly health check. I was scared to even bring it up, but I did... I've got too much to live for. Since the birth of our babies I've developed this overwhelming sense of mortality.  I've been given a front row tickets to too many funerals for loved ones lost too soon. When I told our doctor my family health history I thought he might tip over, but instead we put our heads together and made a plan. I need to be active at a minimum of three days a week or MORE! I need to be conscious of what I eat, I need to lose more weight, I need to be in tune to my body, I need to keep up with annual labs and have a full cardio work-up by the time I'm 30.

After my appointment I felt a bit defeated. Hmpf. It's easy to feel scorned by those who don't even have to be try to be healthy, because it's not in my genetics. It's easy to feel defeated by the extra slice of pizza that you wish you could have. It's easy to feel that so many people need you that needing time for yourself is unrealistic.  It's easy to just watch TV and skip a workout. It's easy to give up....  all of those things are easy, they are also excuses.

For me the time for the easy excuses has ended; I've got too much to live for.  It's time for the easy answers.   It's easy to stand on the scale EVERY morning and understand that tomorrows number will be reflected in how I live today. It's easy to look at my children and husband and find the inspiration to workout. It's easy to change a little. I'm pledging to do what I can to extend the years that genetics has handed me. I can't bear to look at my life and think that according to my family tree my life is nearly half over. Nope- that's not acceptable.  It's never too late to start now. So, if the shoes fit- put them on and get moving.  If they don't- what a great reason to go shopping!!!

PHP, what it means to me..

PHP, what it means to me. For starters- it probably means nothing to you. In the medical community acronyms are often used for long medical terminology. PHP is the medical acronym for Panhypopituitarism a extremely rare disorder in which the pituitary gland stops working or never works- Our son Owen is the latter. PHP has become a passion of mine. As a parent of a child with PHP it's become a way of life for me. It's an ongoing educational experience that in this blog I want to share with you in hopes of inspiring you to perservere against the odds and thrive no matter the challanges life presents and extend compassion to those with medical challanges you might not otherwise understand.

During the last 18 months we have spent so much of our focus on Owen's cleft lip and palate (CLCP), eyes, ears and other surgeries that we only reference his PHP in relation to these procedures. In reality, it's probably one of the most severe medical challenges a 'normal' person can face. In Owen's case he was born with Congenital PHP, meaning from birth his pituitary did not function. In utero he survived on the hormones my body produced. Once the umbilical cord was cut, he was cut off.  We nearly lost him.  In the delivery room the Cumberland Hospital doctors made a life saving decision when faced with a dying baby- they drilled into his leg bone and gave him a shot of adrenaline. It's what his body needed, it kept Owen alive.

It was only when we mentioned our oldest sons Ashton's peculiar pituitary presentation on and MRI and his lack of growth hormone that the doctors at Children's even gave PHP a thought. For days the neonatal intensive care doctors struggled to keep his blood pressure stable, his salt/water ratio normal, his jaundice at bay and blood work within normal ranges. An MRI (presentation identical to Ashton's) and a bit of blood work and he was diagnosed- PHP, no pituitary function.

The very first endocrine doctor we met at Children's explained it this way- The thermostat in Owen's home is broken. His hardware store doesn't carry replacement thermostats. Every function of the home will be affected, unless we can balance the climate with the tools we have available to us. We must improvise. As homeowners/builders we related to this analogy very well. Sadly, this doctor retired the next day.

Here is a quick summary of what the leaders in the medical community have to say about Panhypopituitarism

The pituitary is a small bean-shaped gland situated at the base of your brain, behind your nose and between your ears. Despite its size, this gland secretes hormones that influence nearly every part of your body.  Hypopituitarism is the decreased (hypo) secretion of one or more of the eight hormones normally produced by the pituitary gland at the base of the brain. If there is decreased secretion of most pituitary hormones, the term panhypopituitarism (pan meaning "all") is used. 

Panhypopituitarism is a rare disease- A rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population. Most rare diseases are genetic, and thus are present throughout the person's entire life, even if symptoms do not immediately appear. Many rare diseases appear early in life, and about 30 percent of children with rare diseases will die before reaching their fifth birthday.

The hormones secreted by the pituitary gland help regulate important functions, such as growth, blood pressure and reproduction. For example, the pituitary secretes:

• Growth hormone (GH). This hormone controls bone and tissue growth and maintains the appropriate balance of muscle and fat tissue.
• Anti-diuretic hormone (ADH). By regulating urine production, this hormone manages water balance in your body. A deficiency of ADH results in a condition called diabetes insipidus, causing excess urination and thirst.
• Thyroid-stimulating hormone (TSH). This hormone stimulates your thyroid gland to produce key hormones that regulate your metabolism. Shortage of TSH results in an underactive thyroid gland (hypothyroidism).
• Luteinizing hormone (LH). In men, LH regulates testosterone production. In women, it fosters production of estrogen.
• Follicle-stimulating hormone (FSH). Working in tandem with LH, FSH helps stimulate sperm production in men and egg development and ovulation in women.
• Adrenocorticotropic hormone (ACTH). This hormone stimulates your adrenal glands to produce cortisol and other hormones. Cortisol helps your body deal with stress and influences many body functions, including blood pressure, heart function and your immune system.
• Prolactin. This hormone regulates the development of female breasts, as well as the production of breast milk.

I'm not pleading for pity, just understanding and education. We've quickly found that congenital PHP is nearly non-existent, we've only been able to connect with less than a half dozen people/families worldwide. We have connected with some people that have developed PHP as the result of a traumatic brain injury or tumor- that seems like the most common occurrence. Since Owen's pituitary is non-functioning so are some of his primary glands. His thyroid gland, his adrenal glands as well as his ability of his liver to turn growth hormone into growth factor to make him grow do not function.

The single most difficult hormone to manage is cortisol. The pituitary produces a hormone to stimulate your adrenals to work (adrenaline rush) or Cortisol. Cortisol is bodies steroid, the fight or flight response, the bodies natural ability to cope with a stressful situation- whether it be physical stress or emotional stress. Owen gets Cortisol three times a day to mimic a healthy level of cortisol (adrenal function). When he is ill, having surgery, too hot, too cold, teething, very physically active, or under any type of bodily stress as parents we must anticipate his needs and adjust his levels to make his body cope with the stress. Our pharmacy has a second 'stress' prescription in the event we've had to stress dose him during the month and his monthly supply runs short. We then need to gradually wean levels down when we think he's over the stress so he doesn't crash from the shock.

It's ironic to us that just months prior to Owen's delivery Ashton had an MRI that presented malformed anterior pituitary. It was a clue for us in the challenges that Ashton had faced in his first 2 years of life. It was the prelude to Owen. Ashton was producing all hormones, except Growth Hormone. This isn't completely uncommon, but left untreated has dire consequences- those which we were witness to his first years of life. Low muscle tone, gross motor delay and the inability to grow.

Ashton solved Owen and Owen solved Ashton... there's no doubt about it. They are not cookie cutter, but cookies from the same batch. One just got more chocolate chips than the other. It's astronomically rare to have two members of the same family affected- we are the exception.

So, now what?  Owen is PHP and Ashton is Hypopituitarism and teeters on the edge of full PHP. The first step for us is admission and acceptance. We don't want these diagnosis' to define our boys, but  it does mean lifelong treatment and monitoring- a life of medications and management. Both boys have been treated for 18 months. Ashton's Endocrine Doctor finally came to terms with Ashton's diagnosis when Owen was born. She was in denial that his pituitary was producing all but Growth Hormone, now with the birth of Owen she knows- we're lucky for what his pituitary is producing despite identical MRI presentations of both boys.

Ashton and Owen both get growth hormone injections every night to aid with their linear growth and normal muscle development. Both Shelby and I are trained on these injections as well as Papa and Grandma Fox.  Every day Owen takes a thyroid pill to stimulate his thyroid gland to work and he gets Cortisol three times a day. Once ready for puberty Owen and Ashton will receive supplemental hormones to help their bodies go through the process of puberty- they otherwise would not.

Now what? Fear mostly. Medication is the only reason Owen is breathing... no medication means no Owen.  On a daily basis, giving medication isn't a big deal to us anymore- it's our normal now. The fear of him having to go without medication is terrifying. In the case of a traumatic injury or car accident he needs an emergency injection of cortisol now. We carry one with us, but if I'm not able to relay the information the responders need to check his bracelet. I've recently been informed that emergency responders do not carry emergency injectable steroid...  I've been meaning to make some calls about that (I've got to get on that).

PHP and Hypopituitarism are such rare disorders they are misunderstood and misrepresented. We have gone through the 'functional screen' process with both of our boys to ensure continued care despite insurance coverage.  They both have been denied, in short- because their condition was not 'bad' enough and not properly understood. I'm not sure how bad it has to be, if I quit giving Owen medication he will die.  Despite our private insurance we rely on Wisconsin Badger Care to help with the co-pays for the boys medical appointments and prescriptions. Their Growth Hormone is over $1400.00 a month alone. If our Governor is successful in raising the family income caps to qualify for the Badger Care program, we could face financial devastation. If/when I go back to work full time- it's nearly a sure bet that we will no longer qualify. I fear the day our sons can no longer carry our private insurance- how will they get the medications they need?

Yes, I have fear. I also have Hope. I have hope for a future. I can see the potential and sparkle in the eyes of my babies. I know that as long as properly medicated my sons can both lead productive and normal lives. (Whatever 'normal' they choose!) They can be successful, have families and live fulfilled lives.  I have hope that our sons will help others to understand that you can overcome life's challenges and struggles no matter how big.  Everyday is a journey and we have faith and without a doubt are aware of the blessings that our boys have brought to our life despite their unique challenges.  They have opened our hearts and minds to all those facing a specials needs and challanges, we hope you will follow.

God Bless. Love & Hugs always,

Sarah & Shelby Fox

My little Squirrel

My Sweet Kiera Elizabeth,

I don't get nearly enough time to write about you. It's not that you are not interesting or worth writing about, you're everything I wish I could always write about. I pour my stress and struggles into my journals, I celebrate triumphs and mourn tragedy, I seldom write only about love. Love is what you are.  As for the stress and struggle... one day your Daddy will that argue that with me! He's already sprouting grey hairs just thinking about the havoc you will wreak on his heart one day! 

We've called you 'Squirrel' since before you were born. On all of our ultrasound pictures you had your hands in your mouth and Daddy said you looked like a little 'Squirrel'. It stuck. You don't even hesitate to answer to 'Squirrel' or 'Squirrely'. You'll turn 3 years old in the morning, I can hardly believe it. I must have blinked- you're not a baby anymore, you're my little girl.... my little Squirrel. You love pink, dresses, princesses, singing, dancing, coloring, painting, and pulling all my jewelry out of my jewelry box. You love to put on makeup when I do, you love to pick out your own clothes, and you love your family and friends with ALL of your heart.  You are the little girl Mom's dream about...

You're all girl, but you're certainly not prissy! [ha,ha] Some of your favorite things to do are catch frogs, go jump in the 'muddy puddles', go fishing, pick worms, swim, go for tractor and four-wheeler rides and play outside (without shoes!). You're always looking for butterflies to catch (you still haven't got one!) and a few weeks ago asked me if we had 'pixie dust' so you could go fly with the birdies. You're goofy, clumsy and strong willed. You're thoughtfully independent- you tell me all the time that you don't need my help, but do your three year old best to mind the things I've told you.

We have tough days and we both know it- sunshine and rainbows don't come without rain. But it's time to celebrate the bits of you that fill my heart. Just like your brothers, God had a plan when he brought you to our family...

It breaks my heart to watch these tender years go so fast, but at the same time I'm filled with excitement for the beautiful girl you are growing up to be. I never want to forget these precious times with you and how sweet you are today.  Happy 3rd birthday little girl!

Love you through and through and tomorrow too,
Mommy

The Good, The Bad and The Beautiful

It started when Owen failed his newborn hearing screen. We met with the audiologist, who then said it wasn't a big deal for a baby to fail the first hearing exam and we would repeat it in four months. Four months came and went, fail... another four months and we tried an Auditory Brainstem Response (ABR) hearing study. The plan was for Owen to be under the euphoric sedation of the drug Versed during the test.  While under sedation the audiologist would insert little ear buds into Owens ears and place electrodes on Owens forehead. The audiologist sends sound waves of different tone/volume through the ear buds, she can then read the brains response to the sound via the electrodes and tell with certainty if the child is hearing or not.

The procedure sounds pretty intense, but it really isn't at all. The electrodes are just sticky pads on his forehead and the ear buds are similar to those you would use for your i-pod. It's quite remarkable that just as with children's glasses- these types of specialists don't need the child to verbally respond to know exactly what they need.

Our first attempt at the ABR using the drug Versed was a complete failure. Instead of a euphoric calm, Owen went into a screaming, sweaty rage. This lasted for nearly an hour until the drug wore off.  I held him as tight as I could during the whole episode. That particular experience was enough to put hearing on the back burner of the to-do list for Owen.  We knew he was hearing some, but just not how well.

In July, along with our routine Cleft Clinic Team visit, we again met with our audiologist. We tried to have squirmy Owen sit in the sound booth while the audiologist tried feverishly to get some behavioral responses to the sounds.  We were able to duplicate some of the behavioral responses in the booth that we were noticing at home- he did turn to voices, but seemed to disregard some all together.  At that point we discussed our results and the importance of speech development around the age of two years old in relation to a child's hearing. We are well aware that Owen's cleft palate is the primary root of his current speech delay, but we still had not been able to rule out hearing loss. Rather than delay, as a team we agreed that another attempt at an ABR under general anesthesia would finally give us the answers we needed.

It's the worst feeling for me as a parent to see my Owen's smile fade for any reason other than sleep.  Anesthesia is my smile stealer. Today dressed in hospital scrubs I cuddled Owen and I walked with him for the sixth time to the operating room for a procedure under anesthesia. I snuggled him in my arms as the doctor holds the mask blowing fruity smelling anesthetic. It breaks me. I hold him as gently as I can while he finally drifts to sleep... I hate it and it doesn't get easier. I mull the risks and benefits of the procedure of the day.  Once Owen has calmed I give him a kiss on the forehead and lift him to the doctor. Breath, Pray.

It was just over an hour and my pager buzzed. I quickly grabbed the hospital phone and dialed the nurses extension, Owen was waking up and things went well. The doctor would be out to talk to me soon.  In just minutes the audiologist rounded the corner of the registration desk beaming a smile right at me- good news? Breathe. She plopped down on the chair next to me and with giddiness, she almost screamed- Owen can hear!  She showed me the results of his ABR and they were perfect!  Owen is hearing all tones and audible volume levels. Analise (the audiologist) has been on this journey with us since Owen has been born and I know she was just as excited as us about the results.  With a hug, she escorted me back to the recovery room to see Owen. Just like everyday Owen, he doesn't like being roused from a good nap and waking from anesthesia is no different for him. He was unruly, but nothing that a little apple juice couldn't fix.

A few minutes of observations, a set of vitals, and a signature and we were out of there! We are thankful to know that Owen is hearing all the wonderful sounds of the world around him. We now know with certainty that his speech delay is not being compounded by a hearing impairment... now it's just getting him to listen. [chuckle]  maybe someday, maybe ;)

Loss is not without lesson.

As I drove down the road last week I had an erie sense of déjà vu.  It was the hot humid weather and the bright green of the foliage- the thick of summer. Then I passed the sign for the farmers market and it hit me… it was this time last year, the last time I saw my Mom.   As I drove I fought back the urge to burst into tears. I remember every moment of her visit like it was just last week. 

It had been over a year since I saw her last when I drove to Eau Claire to pick her up. Her friend had agreed to meet me half way and I happily agreed, it saved me three hours on the road. We had talked at length prior to her visit about what we expected and didn’t expect from her visit. In the previous months our relationship had been on the rocks. Her addictions and a series of self-destructive choices had kept my contact with her at arm’s length. I couldn’t afford to toxify the waters of my family anymore. It was too difficult to balance the teeter-totter of struggles that we were going through as a young family.  It became impossible.  She knew this and understood, it didn’t make it any easier. 

We never lost touch, we always corresponded and had the occasional phone conversation. She would share the milestones toward sobriety with me and the things that filled her life in La Crosse. She volunteered, painted, wrote poetry, cooked and always was creating. She told me about her friends and her neighbors. Leading up to her visit we talked about how wonderful it will be for her to meet our babies and for all of us (me, my sister & brother) to get together for dinner. We knew it would be somewhat tense, but looked forward to the opportunity for all of us to be together.

We finally got the dates pinned down and solidified our plans. I purposefully didn’t plan any big ‘touring’ days or events for during her stay. I didn’t want to be disappointed if things fell through. We kept our agenda light and would take in the simple moments of family life.  I would pick her up on Tuesday, she would stay 3 full days and I would drive her back to Eau Claire on Friday. 

 I got to Eau Claire at 11:30am on July 20, 2010 to pick her up.  The first moments were awkward, how could they not be? We hadn’t seen each other face to face in over a year and so much emotional stress and mess had spattered the last calendar year. But, there we were- we made it.  She still looked like my Mom, though this time it seemed the years past were more evident on her face. Her pretty eyes and radiant smile still shone through her aging exterior.  She walked with a slight limp from a bad fall she had taken the year before, but it was her- it was my Mom.

We met my sister Jennie for a nice lunch. The conversation was light, but it was a nice ice breaker before hopping in the car and driving back home. Over the next few days, we didn’t do anything extravagant or crazy. The first few days we hung around the house and played outside with the kids. Mom learned about our kids and much about our demanding daily life with infant Owen plus two toddlers.  When the kids went to bed we sat and watched TV together. On Wednesday we had our family get-together for dinner with Jen & Matt’s families. There were tense moments and some underhanded remarks, but it wouldn’t be a family reunion without those elements. Despite the tension it was nice for all of us to be together.

We visited the farmers market on that Thursday night. It wasn’t anything out of the ordinary, but Mom got the kids a little alligator shaped crayon holder.  It was nice and reminded me of the one we had as kids. We had the ‘fair’ type food and giant cookies and came home. It’s a nice memory.

The next morning we got things ready and loaded up for her trip back to La Crosse. We snapped a few photos of her with the kids, her grandkids, for her to share with her friends. With a tearful hug, I said goodbye to her.

Over the next days Shelby and I talked a lot about the ‘feeling’ we got from Mom’s visit. I felt like she was trying, like she was changing in a positive way. For the next couple weeks I talked with Mom a couple times a week to get a feel of how she was doing post family visit. She continued to celebrate and talk about how her program was going and how well she was doing in her recovery. Shelby and I both knew that reconnecting with her family and being in a supportive environment was going to be a cornerstone of her recovery. To stay sober, she needed family.   What/Who are we if we don’t have a ‘family’? Shelby and I knew the answer to this question all too well; we wouldn’t have otherwise survived the last few years without the strong support of our close family. Shelby and I wanted to give her the opportunity to reconnect with our family and complete her recovery- we offered for her to move in with us as a stepping stone to relocate herself closer to us.

I can still here the happiness in her voice when I called and asked her. She was so excited, she told me she never thought she would have that again- family. She was going to do everything she could to make the move. She had loose ends to tie up in La Crosse- she had to finish her program in La Crosse county, inform the proper people and transfer some other obligations to Barron County- but we were going to make it work.

Over the next few weeks we would touch base with each other on Facebook, phone and email to find out how things were going and how much longer we would have to wait. We finally got word that things would be ready sometime in the beginning of November for her to make a move.  It was nice, to have my Mom back. To feel like we were connecting, to know I had a Mom; my kids had a Grandma, to have somebody to talk about what I made for dinner, to swap recipes and kitchen tricks with. Mostly, to have a Mom.  To have the Mom that had been missing for the greater part of my teen years and for the larger part of the past few years.

…and then things went quiet. I hadn’t heard from her in a couple days and her friend in La Crosse called me to tell me that she had missed her last meeting. The honeymoon was over. I didn’t need the confirmation from the police, I already knew she was gone. God had given me those last moments.  We had our moment, our last hurrah. Loss is not without lesson.  I’ve learned more than I can write from my Mom- some great lessons and some lessons better to experience from afar. She taught me how to cook, how to enjoy cooking, how to paint, how to sew, how to nurture my own creativity. She taught me about music  and how to enjoy the little thing in life. I’ve learned to take greater care to live in the moment and enjoy those little things.  Life is short, sometimes much shorter than you planned for… 

'Creating Opportunity'

'Create the opportunity'  This phrase has been rattling around in my head for the past week and a half. As I sat with Owen's speech therapist in our weekly session last week we were practicing some signs and vowel sounds, when she said something that just struck me. She said that when working on Owen's speech development we need to 'create the opportunity' to use signs and words to describe our actions.

Makes perfect sense, right? Say we're eating dinner and he's obviously anxious and wants more... don't just give in. Ask him first while using the sign for 'more' and try to have him mimic your words or actions to 'create the opportunity' to exercises his skills and abilities. I guess in some sense we've been doing things like this for some time in our day to day with the kids. Example: when Owen might be interested in a specific toy or snack- we put it on the coffee table to make him use his muscles to stand. We have been doing things like this for Ashton since we first recognized his gross motor delay.. put the toy just out of reach so he has to work for it, only let him walk while hanging on to one hand instead of two while he's distracted, ect, ect.. I think all parents do this to some degree to nudge their children along as a way of nurturing their skills and abilities to their full potential .

It occurred to me that as adults we don't flinch at the though of maybe taking an extra minute to create an opportunity for our children, but when it comes to ourselves... we typically don't give that though a single moment of regard. We many times look over those moments that could be pivotal in creating opportunity for ourselves. Whether that opportunity be personal, professional or for pleasure... we need to remind ourselves to be consciously aware and willing to stop and hit the pause button to take that moment- create that moment. Carpe diem folks!

I'm not talking about getting a shower in while the kids are napping or loading the dishwasher while you talk to your Dad. That's multitasking... I'm talking about seizing those moments to nurture your own skills.  abilities and interests for personal gain or the greater good of mankind. As adults- we can't be too proud to set the bar a touch higher than we are comfortable with, to apply for a job that might be a little more than you think your resume qualifies you for, to have faith in God and the universe for the unknown, to know that even when things seem impossible they just might work out... and in the most surprising and wonderful ways.

I know that in some way, shape or form I was meant to have that phrase roll around in my head and on the tip of my consciousness for the last week. I don't claim to have any type of ESP, but as most of you have read in my previous blogs- I have faith in a master plan and that phrase was a piece that was suppose to mean something to me. The good news,  I picked it up! Have faith, have hope and have a minute to create an opportunity.

Love and Hugs to you all,

Sarah

Water, Water Everywhere...

There are many hobbies and interest I've put on the back burner since starting a family. I'm not resentful in any way to sideline some of the time for my personal interests to rediscover the world of duplo lego blocks, crayons, playdough and cartoons. I have definatly developed a love for those things in the most recent years too.

For the most part, I try to encourage and incorporate my own interests and the shared interests of Shelby and I into fun activities for our children to enjoy too. It's pretty easy to get the kids outdoors, into the kitchen, in a book or in the boat without much of a production...  I'm thankful to my Dad chose to include me in his hobbies and interests too. Most of all, I am glad that he shared his love of fishing with me. I LOVE TO FISH! I'm proud to say that I can tie my own line, bait my own hooks and land my own fish. I understand thermoclines, structure, the importance of presentation and weather patterns on the behavior of fish. Fishing is an activity I enjoy above most others.
 
Shelby just got back from a nice Canadian fishing trip with most of the Fox clan. I am incredibly glad that he was able to go with for the week.  I had some severe reservations about him leaving me home with our three babies for an entire week, but the kids and I kept busy and the week actually went by pretty fast... and Shelby played the thoughtful husband card well. He had a very nice potted deck planter scheduled for deliver on the 4th day that he was gone. It was a very nice pick-me-up to help this Mommy make it through to the home stretch. He was sure to add some comic relief to the situation by picking out a planter card that read 'Wishing You Success'.

It killed me to pack Shelby's clothes, get the gear and food ready for another Canadian trip without me. I couldn't help but selfishly think...  It would seriously take me 10 minutes to pack a bag, grab my gear and go.  It'll take me less than 8 hours if I drive straight through... I've done it alone before. I've got my passport up to date... now, I just need somebody to watch the kids for a couple of days and I could go too.

Truth is, they already had four people in our boat and five wouldn't have been much fun- even for a couple of days. I had capable and caring hands that I could have left the babies with, but the timing was off. Shelby knows just how much I love and miss going with him- and I'm sure he wouldn't have been surprised in the least if I had shown up ready to go fishing. Canada is my little slice of heaven.  I love the peaceful solitude of the lake and the disconnect from the wired world... the only technology that we have that works up there is our depth finder and camera- and that's how I like it.

Most days we are lucky if we see a single boat that isn't part of our crew- we probably will see more bi-planes than boats. With our paper maps in hand we plot out the lakes we want to hit and the new ones we want to find.  We find the ugliest abandoned pulp roads and plow down them. We don't leave camp without a chain saw, axe, fix a flat, winch or marine radio. We don't care if our truck gets scratched or boat gets a little bump from a rock, because it will happen- they're just battle scars and part of the fun. Most of the landings we go down are a few kilometers long and you'd be lucky not to need any of the tools I mentioned to get to the lake.... and that's my heaven.  It's full of rocks, pine trees, crappy roads, campers, campfires, bears, moose, islands, rocks and FISH. I love to rock a pair of awesome shoes, makeup, funky hair cut and all things girly- but I'll trade them any day for a day on the lake with my favorite fishing partner, St. Croix rod, and tackle box that's at least 5 times bigger than my purse.

Soon enough we'll be able to take our Canadian trip as a family again- that was fun! All three kids enjoy the outdoors and fishing as much as we do and sharing that love with them is the best! Ashton is a Canadian veteran and has been there twice and Kiera has been there once. Even though both Ashton and Kiera had been to Canada by the time they were Owen's age, fear is what keeps me from bringing Owen this year. His daily medications add a layer of complication to the trip. Giving him meds while away from home isn't the problem, it's getting him the meds he needs if we have a problem.

I can't help but shaking the thought of 'what if' we hit a rock and punctured the hull of the boat, what if Owen falls in the water, what if his meds are lost, what if we can't warm him up after falling in and we don't have the emergency meds to give him, what would we do? How would we get him the care he needs? He's just so little yet and can't tell us what he needs or how he feels.. What if he gets bit by bug and has a reaction... where would we take him? what if...
I know most of these thoughts are leaning to the neurotic side, but I can't help but contemplate the possibilities. We could play it safe and not visit the remote areas that we so love, but I think we would be shorting them and us on the experience of 'our' Canada. I think in another year or so I'll feel better about bringing my little buddy- when he can more easily communicate how his body feels and tell us what he needs. That's probably the biggest hurdle of our hormone management... it's all on gut and patterns for us until he can tell us different. I need more certainty to feel secure enough to bring him along- I'm sure he won't mind this year ;)

For now, I am happy to settle with a quick run to the nearest lake with the boat and bait. It doesn't really matter if the lake is frozen or not... we're fully equipped for both and so are the kids! Our trips to our local lakes have gotten more exciting with the addition to the kids- because they aren't staying home! It's very obvious that our kids love to fish too- they frequently practice with their kiddie poles in the house and turn practice into play when we hit the water. These days they usually catch more fish than Shelby and I do- and we don't mind a bit.

I think there is a sort of irony in the 'master plan' when we consider how much Shelby and I both love fishing. Shelby and I don't really get into televised sports or any other sports for that matter, we don't have many other hobbies that require huge chunks of time, and we most always agree on our fishing spending splurges. If we had a choice of most activities and fishing.. we would rather hit the lake and we're thankful our kids seem to feel the same way.  You don't have to be physically tough athlete, you don't have to be able to walk or run perfectly, you aren't ever too young or too old- you just have to be able to hold a stick or willing to ride along on the water... 

The charm of fishing is that it is the pursuit of that which is elusive but attainable, a perpetual series of occasions for hope.

Forget me not...

It's been almost 4 weeks since my last blog and just like the season of Spring, our kids are in full bloom as well. The kids are all getting bigger and it's so easy to lose sight of where we have been. Somebody told me once that you're body/brain cannot recall the sensation of pain, but only the lesson that you learned from it. It's a type of gift that our brain gives us, not to relive the physical pain of excruciating moments in our lives. I think the same holds true for the emotional pain and struggles. Once you are able to put the struggles of the past in your past, it seems easy to forget the emotional pain and sadness. We recall the lessons learned and triumphs over tragedy, but the emotional pain of those tense moments is nearly gone.

Last year at this time if a fortune teller were to have told me about all of the changes and accomplishments our babies would make in one years time- I wouldn't have believed them. There is simply no way I could comprehend or imagine how we as a family could trudge through, survive and thrive through such an eventful year.

Last week was the one year anniversary of the first of Owen's life changing surgeries. On May 10th, 2010 Owen went in for surgery to close the cleft in his lip. I was so scared that I would lose the beautiful BIG smile that God gave him... lucky for me, the surgeons skillfully crafted Owen a new smile that was just as big and just as handsome as his first smile. Since May 2010 I have held Owen in my arms three more times as he drifted to sleep under anesthesia for subsequent surgeries.  We are blessed to have had the pleasure of working with such skilled surgeons, doctors & nurses, but for now look forward to a small break from them! We will see Owen's craniofacial surgeon and orthodontist in August, but don't expect any surgeries in the near future. It's nice to focus on the normal toddler things for now.

...and speaking of 'normal' toddler stuff! Owen has decided that he can eat ALL things by himself now! He very much prefers and is pretty insistent at times that he can eat by himself. He only allows me to help with apple sauce and yogurt lately. It's seems so alien to just make Owen a plate like Kiera & Ashton now, after all it was only a short 10 months ago when he was exclusively tube fed baby!

Owen is also quite mobile and crawling everywhere and tall kneeling to reach almost whatever he wants. He is inconsistently getting up to his feet, but we work on it everyday... and we know, we'll get there. 'slow and steady!'  We are happy to report that despite his non-functioning pituitary gland, he is thriving and growing due to the supplementation of his hormones. You can read more about hypopituitarism here: http://www.mayoclinic.com/health/hypopituitarism/DS00479
Owen gets medications five times a day, but that means life for him. No medication = No Owen. It's that simple, but it's not scary for us anymore. We are thankful to live in a day in age where the medications he needs are available and easily monitored by his endocrinologist. We have successfully made it through a acute case of pneumonia and kept him out of the hospital... this is a BIG DEAL with a kiddo with hypopituitarism!!!  We have been granted a kind of 'gold star' from Owen's endocrinologist! We have been given an extra month between visits- we now will be on an every 4 month visit schedule instead of every 3 months!! wahoo!

Kiera is loving every second of the warmer weather, she really just loves every second to be spent outdoors! I struggle most days just to keep her in the house! In fact I installed a gate on the far side of the deck near the stairs, so if she does escape out the patio door- she can't get off of the deck without my assistance. I'm glad I did it! It is nice to be able to have the patio door open and just let the kids play on the deck while I get dinner ready or run inside to get more bubble solution for the bubble machine!

Kiera's language and understanding continues to excel! I can't think of a single thing she doesn't know anymore or can't say... she's just so much fun! She is certainly wise beyond her years, but then again she has been on the journey with her brother's for a long time. She is no stranger to compassion, perseverance and unconditional love. It's wonderful to see her reciprocate those attributes right back at everyone! Tonight when I tucked her in I said, 'love you, Squirrelly' as I shut the door and she screamed, 'Mom, wait!'  I cracked the door open again and peeked my head in.. she sat up and said, 'I love you through and through!' Oh, that got me.. she does it to me all the time!  I went back in and gave her another hug & kiss and told her, 'I love you through and through too.'

Ashton is growing steadier and steadier on his new found feet every single day. It's pretty awesome to have a front row seat to the new and exciting world walking has brought to him. He has changed so much in a single month, it's nearly unbelievable. His daily frustrations and outbursts have decreased exponentially -his body is now coordinating movement with his mind! He doesn't need my assistance for most of his day to day activities now.. and to tell you the truth, it's weird! I'm embracing every moment of it though and giving him the 'room to run'. I try to intervene as little as possible so he can cultivate his new skills organically. He's doing a great job too!

Over the last 3 month's I made the conscious decision to quit worrying about what Ashton ate and how many calories he was taking in every day. It seemed almost a sin! After all, it has been routine for me for almost two years with Ashton... and guess what? He gained 2 pounds! It's quite obvious to me that after one year of being on growth hormone- his body is positively responding and doesn't need my calorie counting anymore!

I could go on and on about the things the kids don't need me for anymore... did I mention Ashton and Kiera are both about 90% potty trained now! I know, I know.. they are all still under the age of FIVE and will need me for years, but the first 4 years have been quite complicated and it's been a struggle to get here.  It's an akward sense of relief to be able to let go of some of the 'baby Mom' duties and move forward. The tears, heartache and feelings of defeat are easy to let go of now. We have learned so much in the last four years... I can barely wrap my head around the next 20!

While I realize that this moment is a plateau in our climb to the mountain top, I'm going to enjoy the level ground for awhile!

Love & Hugs,

Sarah

My Dear Ashton

Dear Ashton,

Someday you will be old enough to surf through my blogs and you'll get to know me. You'll read about the challenges we have faced as a family, you'll read about the things that make me smile, the things that upset me and the things that make my cry. Today I want to tell you about you, the you right now.

At the ripe old age of four, your beaming personality shines so bright and leaves a glow on every life you connect with. You are an amazing inspiration to me and our community of family and friends. Your electric blue eyes easily inspire the compassion and understanding you deserve. It's impossible for me to express in words the purest of joy, inspiration and wisdom you've brought into this world.  You have faced many obstacles most adults will never know. The unique complexity of your medical history has baffled the most skilled doctors and professionals, but even so young you have chosen not to let that challenge define you. You have chosen to excel against unfathomable odds.  With your unfaltering love for every soul you meet and social nature you bring the best out in the individuals around you and in turn change how each of us moves forward. Today your journey forward has taken a more literal path- Today you began walking independently.

Someday the challenges you have faced before this day will be a fading memory.  Someday April 20th, 2011 won't mean a thing to you, but this day will forever make my heart sing. I will never forget this day and the many first moments you experienced. As I type I'm dreading going to sleep and letting the beautiful dream of this day end. Today you walked with your own feet into our home, you stood independently to accept a hug from your sister, you walked to your Daddy to give him a high five, you walked to your Grandma Fox to surprise her, you walked through the kitchen at Papa's house to surprise him, you walked without assistance- nothing but 'Ashton Power'.... you walked, and walked, and walked!

Today changed everything. My tears today weren't for the things that you aren't able to do yet, but tears for the new adventures that will come to you and the ones we will share. Since your birth we have been on this journey together and today you showed me that your journey isn't just about your challenges and the challenges we have endured together as a family.  Like everyone, your journey has a greater purpose.  I know God's plan is complicated and will probably not be clearly understood in this life, but today I have been able to extract one nugget of  truth in His plan... You have given this world hope.  While your journey is far from complete, this piece of the greater plan could not be more defined. 

Over the past four years we've laughed, cried and squabbled with each other during your quest for independent mobility. Today our collective prayer for mobility free of assistance was granted. I know you will enjoy your new wings, there is a whole new exciting world for you to explore. With your new mobility there's also a whole new world of trouble for you to get into, but for now we'll try to keep focus on your good intentions! ;)

I love you very much. Ready, set, GO!

Mom

State of the Union

I read an article on Yahoo news a few months back about a Mother who was proud of her decision to choose to leave her husband and children behind to seek her professional life hundreds of miles away. Not because she was called to serve her country, not for financial gain to benefit her family, but to seek a new life for herself -alone. She said she just decided the life she had build wasn't for her.  She willingly gave up her relationship with her husband and years with the children she loved enough to give life to.  She just left them.  I couldn't imagine this, it made me sad for the woman who was very proud of her choice. It made me feel sad for the children who probably felt not good enough.

Then last night I started to watch 'Eat, Pray, Love' and made it about 20 minutes into the movie and shut it off. I found it  impossible to relate to the Julia Roberts character. I could never imagine telling my spouse "I don't want to be married anymore"  to selfishly pursue a world wide adventure solo. 

I feel like stories and movies like this are handing out 'free passes' to those who considering divorce as a way to forfiet the game in favor of self indulgent behavior at the expense of others who have emotionally vested themselves in the relationship.  I have to say- I don't think this is acceptable, infact I think it's shameful. No relationship is completly effortless- there is some 'work' that needs to be done. Everyday isn't going to be sunshine and rainbows- get over yourself!   I do understand how dysfunctions like addictions, mental health and adultery can plague a marriage to the point of creating an environment too toxic to continue the in any way. I fail to understand how one can just give up.

Now, someday (although seriously I doubt it) I may be forced to eat my words. My marriage is not perfect, but I think that's what makes it solid. Shelby and I both have similar interests and love for each other, our children and families. We also enjoy our individual activities, but never at the expense of our husband and wife relationship.  We sometimes argue, we sometimes get annoyed with eachother and we rarely agree on what we would like to have for dinner most nights, but we do love. We joke very openly about eachothers faults, we can find the humor and hilarity in the hiccups of our day to day life and we TALK. No subject is ever off limits. We talk about everything and anything... the conversation may not always end in smiles, but we know where each half stands. I think it's that depth of understanding and openess that keeps us tightly connected.  We've been together for 10 years and married for five. I was only 17 when we started exclusivly seeing eachother.  Yes, that's young. I will probably have a fit if/when my children are seriously dating at 17, but I will also have the knowlege and hope that they might find somebody that they can love as much as Shelby and I love eachother. ...I know sappy stuff right?

I am no expert on marriage and don't have decades of experience at it, but I think I've got the fundamentals down. I take very seriously the vows we exchanged on our wedding day.  To tell you the truth, I can't tell you exactly what readings we had picked or what all was said. I do know- our union is not just Shelby and I... it's Shelby, Me & God. I know that as long as Shelby and I do what we can to keep our marriage in tact, God will help with the rest. We have been very thankful to God for the blessings that we've been given in our marriage, afterall we have three beautiful children and a solid relationship.  Family means more to us than anything. More than work, more than money, more than anything- without family to share our life with we would be lost. What else is there in this life? We have so many great people in our family to learn from and love and we are so thankful to have them in our life.  We miss those that have passed, but cherish thier memories and imprints they have left on our hearts that keep us strong. 

I had the pleasure of spending the day with Great Grandma Fox today- she was married over 50 years and stuck it out 'until death do us part.'  I'm betting things weren't always perfect, in fact I know she would probably tell me that outright. What I do know is...  she is one of the most amazing people I know and I bet she didn't get that way all by herself. She had 50+ years with another amazing person I had the pleasure of knowing.

It makes me so sad when I hear about divorce. Like I pointed out before- I understand and can personally relate to how addictions and the like can toxify a marriage, as my parents parted ways for this reason.  But when I hear of divorce and at the surface there appears to be no outstanding defficiency I always wonder- what did they do to save thier marriage?  How can you just stop loving somebody? I just don't know, I can't seem to wrap my head around it. I guess I'm glad I can't.... I don't ever want to feel that way.


1 Corinthians 13:13
And now these three remain: faith, hope and love. But the greatest of these is love.

Mobility Engineers

I can wholly admit that as a mother three; and two of which have a disability, it is easy some days feel defeated.  My last post was probably one of those days. ;) I worry and wonder if the things we are doing for our boys are enough- always brainstorming, 'what else can I do to help them along?'   I know there are days where any parent can feel this way...  I think self doubt is the plight of parenthood. The constant wonder and worry, but then you have a day like we had today and you know that everything you're doing is just right.

The last week has been paramount for Ashton and his quest for independent mobility. After weeks of waffling back and forth on whether or not to make the move to get a walker for Ashton, Shelby and I made the leap on our own. It was something we had been discussing with Ashton's physical therapist, but hadn't made any official moves.. we were still in the process of his PT trying to locate a small enough one we could borrow from a medical facility to see if it was a worth while venture- when the ah-ha moment came! We felt that Ashton needed to feel what it's like to walk without the assistance of others, just Ashton power. The walker would be assistance, but totally in his control. While getting Ashton up from a nap I walked by his room and eyed an old hand-me-down toy baby doll stroller and thought... if we did this, took this off, turned this, reattached this piece here- we could have an Ashton size walker!

I helped Ashton up the stairs and immediately went back down to get my newest invention. After I ran the idea past Shelby- because I would need his assistance in manufacturing my invention, we were in business. We removed the Winny the Poo cover & shade, drilled out rivets, used the pipe cutter to get the handles just so- and we had a walker.

I can't even begin to explain how great Ashton has received my invention! He has been a walking machine!! He can easily maneuver his walker around the house and get from place to place without assistance from us, he is even choosing to use it without our asking! In a week we have witnessed his mobility skyrocket, he has been zooming around the house and just 'looking around' from his new vantage point- and today was the icing on the cake!

We have PT on Mondays and Wednesdays at 9am at the Early Learning Center and after his PT session the teachers have extended the invitation for Ashton (and me) to stay and participate in the group activities for the remainder of the morning session. We did this last Monday and did pretty good until the last 20 minutes, but today was AMAZING! With his new wheels he easily lined up and walked with his assigned group, moving from activity to activity with little adult intervention and a whole lot less resistance. While watching him move through his day, I could only concentrate on not losing it and crying like a baby when he danced with the other kids during motors time.. watching him dance to the music was pure joy.

He even requested we go out and play with the other kiddos at the end of the morning session (Ashton NEVER asks to go outside- who wants to go outside when you have to crawl or have the constant adult companion) and so, we went outside and played! It was a gift to see him just be a little boy- to walk, to play, to discover, and to interact with his friends while standing on his own two feet! It was a relief and gift to be able to sit back and watch him from the sidelines- the whole time silently chanting "Go Ashton, Go!"  ..and God Bless those ELC kids that are so unbelievably accepting of him! The affection and true compassion they extend to Ashton melts my heart! It is very clear that engineering a walker for him was the right choice. I can't even begin to tell you how proud I was to see him participate just like the other kids today- yeah, just like the other kids!

There are many days that I struggle to have my boys recognized for the beautiful people they are inside and not defined by their unique disabilities. Today, I know I wasn't the only one that got to see beyond Ashton's disability- we saw his ABILITY!

I praise you, for I am fearfully and wonderfully made.  Psalm 139:14a

I'm a Mom...

When I find myself in conversations with people and when they ask what I do- I immediately utter my auto response: I'm the Marketing Manager for Adventures Restaurant & Pub. While I love my job at Adventures and the flexibility that it allows me to work from home it takes but a sliver of time in my actual week. Over 90% of my week is devoted to my children and developing their brains and bodies to their highest potential. Truth is, I'm afraid to tell them "I'm a Mom." or "I'm a stay-at-home Mom"  ...I've done this before and I'm here to tell you- I exercises extreme caution when telling anybody this is my job title!

If the phrase some how slips out of my lips- It's almost as if you can see the level of respect the other person has for you continue drop until they have recovered from your curve ball of a response and continue the conversation. While it's true, not every person reacts this way (there still is a small  underground group of cheerleaders out there). I would say the average is a mortifying 75% of the population gives the blank stare and gives up hope of being able to carry on any sort of conversation with you on topics unrelated to laundry or diaper brands. It's strange to me that one of the most important responsibilities one can accept can command such little recognition or respect. I'm a well educated person with a college degree, but I mean really- do you think I could list being a Mom on a resume and get away with it? I know, the feminist in me says I should not be ashamed or flinch at the thought of doing this, but the business minded me says, "Yeah Right!" It seems like if at the 12 week mark following your child's birth if you don't drop your baby off at daycare, society assumes you have chosen to instead surrender your brain and ability to contribute any valuable skills or talents beyond removing stains from your kids shirts.

Every few months I have a teary eyed conversation with Shelby about how I am envious of him. I know, your shocked right? I cry... yeah, I do. Heck, I just told you I'm a Mom... why shouldn't I continue to embarrass myself- right?!  I am envious that he goes to work. To me going to work would mean at least 8 hours of social interaction and camaraderie. It means he has a clock-in time and a clock-out time. It means that he has the ability to take a day off and use his vacation time. It means that he has a retirement account- a day when he can stop working without the worry of financial obligation. I have to remind myself... he does these things and is also a Dad. My gripes are kind of like preaching to the choir now!

Most of my days consist of none of the things of a corporate career. We try hard to pattern our days so we have some sort of schedule and routine- it works most days, but calling in sick doesn't cut it!  I love when the kids and I get visitors or we're able to get out and about. Reality is two of my babies aren't walking and Owen's medication schedule requires thought and planning- it's impossible to go anywhere on a whim. Every venture out is meticulously planned and going to any retail establishment is out of the question when I am the only adult able to go. I don't get days off... if Shelby takes vacation it's because he has plans. It seems like lunacy for him (our breadwinner) to take time off so I can take time off, when we so desperately need his vacation days for family time, medical appointments, and the rare real vacation. Truth is- I don't know what I (alone) would do with a day off anymore. I don't need time to myself or have the available cash for some retail therapy... many of the friendships and social relationships I once had have suffered greatly due to my lack of social time. ...social time is usually in the evenings (when Shelby works) or after 9pm anyway, not really an attractive hour when the rooster crows at 6am! I wish that were different and really cherish the social relationships I have still been able to keep in tact- I've got a few very true friends and am so thankful for that! 

Yes, there are some sacrifices to being a Mom- just as there are to all other employment opportunities. Being a Mom also comes with a very impressive incentive package. Every day I have been given the opportunity to cultivate and nurture the minds and bodies of three amazing individuals. I get to witness the pride they take in mastering a task for the first time, I get to share the moments that make life matter, and I get to be the recipient of the purest of love on this Earth from the three most wonderful souls I know.  I also get the job perk of having a great work partner. Shelby is my best friend, my favorite fishing partner, he's a fantastic Dad, and the person I can dump the clutter in my head out on when pen and paper are too slow to keep up. He is the reason I can be everything I am.  I'm very lucky and blessed to have been given this opportunity to be a Mom. I guess being a Mom isn't my job anyway... it's my privilege. I'm so proud to be a Mom.

This Sunday would be my Mom's 53rd Birthday, she always sure to tell me how proud she was of me and I'll never forget that. Thanks Mom. <3  

Thank you WI Senators!

Dear Wisconsin Senators,

I appreciate the sacrifices you are making to fight for the rights of the Wisconsin public. I realize, as I’m sure you do too, that may see you as cowards who are afraid to face this legislation head on. The truth is, how can you? If you show up the bill get’s passed. I applaud your efforts to do what you can to raise awareness and stall this bill and to be sure the voters you represent have the ability to be truly informed and heard. I hope that your absence will also ensure all of our Wisconsin Senators take a long hard look at what Gov. Walker is proposing.

While I am not a teacher, state employee, or union employee, I am a Mom. I the mother of three beautiful children, two of which have a disability. My two son's share a rare and complicated medical condition- in a short summary their pituitary glands do not work as they are suppose to or do not work at all. This condition has a trickle down effect on almost every facet of their quality of life. Their condition requires a team of skilled specialists and very frequent and very expensive monitoring, as well as many hours on the road for our family. My boys medications alone are a minimum of $1200.00 per month and that is but a slice of their treatment cost. While my boys are only one and four years old, we know their treatment will be lifelong. With the ever increasing cost of prescription medications and medical treatment, we expect their medical cost to increase exponentially in the future.

My husband carries a private family insurance plan through his employer, however we greatly rely on Wisconsin Medicaid Badger Care program as a secondary insurance provider to pick up the costs above and beyond what our private insurance policy covers annually. If Gov. Walker succeeds in passing this bill it's within his grasp to reduce the maximum income requirements for our family to qualify for the Wisconsin Medicaid program. While our household income at the surface seems like a sufficient amount for a family of 5 to survive on, for us it's not. The medical debt we have incurred over the past 5 years has us strapped. We don’t drive brand new vehicles, we’ve postponed many finishing projects on our home and we’ve made huge financial sacrifices to keep the things we have worked so hard for. The amount of medical payments that we would incur should Gov. Walker reduce or eliminate the opportunity for our family to participate in the Badger Care program, despite our private insurance, could be the final blow to our sinking financial ship.

So on behalf of myself and my family I would like to greatly extend my gratitude for doing your best to stop the madness that is going on right now in Madison. Thank you for your service to our great state!

With Warm Regards,

Sarah Fox

The thing is...

It's a phrase I find myself saying a lot these days as I struggle to explain our children's special needs to others. As Ashton gets older, his challenges become more obvious to the general population.  I know... I'm not obligated to explain anything to anyone, however in almost daily conversations and interactions it is usually necessary to some degree. I don't necessarily feel the need to 'explain' our situation as have others understand it.  As of late, our family challenges seem to attract extra attention in public places from onlookers who are admiring the charming petite boy trying so hard to walk with assistance so he can keep up with the big kids. We hardly ever encounter ridicule or snide looks, but they happen too. 

Ashton's case in particular is incredibly complicated, mostly because we have no map for his journey and a sporadic grouping of symptoms -that at first glance seem unrelated.  It's easier to feel comfortable with Owen's slow and steady progression... Ashton's past progress has been well documented and is providing a sort path for Owen.  I was reminded of this at the doctors office today during Owen's one year check-up. I will never forget filling out the milestones/skills worksheet for Ashton at his 6, 12, 18... month appointments and feeling so ashamed of the milestones he had not yet mastered. Every 'no' circled made me feel like a failure as a mom.  At that time we were not yet aware of what was going on with Ashton's body or brain.  He was our first baby, we were new parents with lots of self doubt. We were only seeing the decline in his skill mastery and we easily let it define how successful we were as parents. We visited specialist after specialist that looked at me with ridiculing eyes and asking question after question about how my husband and I cared for him. It was mortifying. He was 'normal' at birth and slowly lost mass until he was tiny for his age, he was not growing and not mastering skills.  He was verbal and obviously intelligent, but at such a young age that seemed like such an insignificant win. While he was very social and beamed love, I knew why we were constantly asked about his care- he looked like a neglected baby. I logged every morsel of food that he ate and every ounce of formula he took in and calorie content of everything, still we struggled to convince any specialists that his size and lack of muscle tone was unrelated to his diet or general neglect.

In time and with lots of practice we  have slowly met many of his toddler milestones- independent sitting, crawling, pulling to stand, cruising, self feeding... It wasn't until we had Kiera that we learned you don't have to 'teach' your baby everything! We had no idea that babies would roll, sit, self feed,... on their own for the most part- without hours of practice and prompting! Just before Ashton's second birthday we were thankfully referred by our primary doctor to the Mayo Clinic system in Rochester, MN. We went through some of the same initial dietary and care questions and actually had a Gastro doctor recommend he have a feeding tube, despite adequate caloric intake and normal gastro activity. We thankfully declined.  The first few visits to Mayo were exhausting, Ashton was turned inside-out. It was at Mayo that we finally were able to identify his pituitary malformation- a cornerstone to his puzzle. We are thankful to say that today we are on the same page as our doctors. We are working together to manage his quirky symptoms as they arise. As a team, we understand the complexity of his symptoms and do not take for granted the milestones he is achieving. We have learned to greatly appreciate and celebrate the small wins -and we do!

I find myself endlessly searching on online forums and research pieces for others who can share the same experiences and symptoms as we have in our little family. Our geneticist at Mayo is very engaged with our family and is our partner in the research process. We are very lucky to have Dr. Ellison on our team and very lucky that nearly all tests only require a tiny bit of blood work with DNA extraction. To date Ashton has only had to have a single blood draw for genetics testing. Mayo only uses minute amounts of DNA extracted from his blood for each genetic test -they keep his blood in the cyrogenics lab so additional tests can be taken from blood that Ashton gave over a year ago.

While we don't know how his particular pituitary malformation affects all the systems of his body, he presents symptoms that we have not yet been able to tie to a diagnosis. Ashton will turn 4 on February 8th- he is not yet able to walk independently, his muscle tone is greatly decreased when compared to his peers, he has a odd- almost labored breathing pattern, along with other quirks. It's hard to know if some of those quirks are diagnosis related or just our super intelligent boy trapped in a body that isn't working the way he needs it to? Despite Ashton's motor challenges, he is incredibly smart. He has cultivated and mastered many advance skills, we believe as a result of his deficiency in other areas. His bright eyes and cheerful nature easily wins hearts and the compassion he deserves.

One of our biggest struggles is- the future. We have no idea of what the future holds. I don't want to see the future and don't wish it to change, but I do wish for an outline. Most parents see their kids futures in milestones-  preschool, gradeschool, driving, dating, graduation, college, career....  I hope and pray for those things everyday, but the reality is- we don't know what the future will bring. I know, none of us do. Tomorrow isn't a guarantee, but a gift- I just wish to see the shape of the wrapped box or the color of the wrapping paper.. or maybe just give the box a little shake to guess what's inside!

Our primary challenge as parents we have when trying to help others to understand our boys medical needs is the absence of a diagnosis. While some would see a diagnosis as a prison with stigma's attached, we see it as freedom. I know many parents who's children have been diagnosed with lesser forms of a particular affliction and struggle with the stigmas that the particular diagnosis carries with it. My husband and I are both aware of the sliding scale and degrees of affliction, but we also know the relief and sense of future it will bring. The collection of symptoms that Ashton presents seems unsensical and confusing to most, his doctors included.  The lack of a diagnosis alienates our family from other families and support groups that could provide us with the opportunity to relate and share experiences of the common affliction. When explaining Ashton's journey to inquiring people most focus on the obvious deficiencies. They just don't get 'why' he isn't walking yet, truth is- we don't know either and we try not to dwell on that alone.  We don't know why his body is not working for him. We really only know one thing about Ashton's medically- his pituitary gland is malformed and not working to it's potential and requires supplement hormones. -just as Owen does.. like I've said before... They are not cookie cutter of each other, but defiantly cookies from the same batch :)

So, we continue to move forward and work on skill building. I feel like Ashton's walking abilities is the last major milestone that we need to focus on right now. The worldliness he will gain with independent mobility is going to be paramount for him. I look forward to the day (and will sob like a baby) when he can walk over to me and give me a hug. We try to minimize his frustrations while encouraging his gross motor skills, however he is almost 4. He has a mind of his own and can very clearly and very loudly communicate to us what he does and does not want to do. Ugh! ...slow and steady...

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future."  Jeremiah 29:11

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