I Have no Formula for Winning the Race

Perseverance is not a long race; it is many short races one after another.  ~Walter Elliott

Last week, Superkid and I spent a day visiting with doctors.  Superkid had three specialists that we needed to have follow-up visits with, and somehow I was able to fit all three appointments into the same day.  It was a long day for both of us, shuttling between two downtown clinics at two different hospitals, with a couple of loooong waits in various waiting rooms.  No tests--which was nice--but a long day, nevertheless.  

Our follow-ups were with immunology, neurology, and genetics/metabolism.  Immunology was completely unproductive in that the battery of tests they had done provided no answers to why Superkid gets pneumonia so frequently, but productive in that the tests did show that Superkid has a healthy immune system, so we can cross immunology off the list of specialties that follow her.  The neurologist had some additional tricks up her sleeve to help combat Superkid's migraines, and I feel like we're seeing some improvement with those.  And genetics/metabolism was, like always, a full semester of advanced bio-chemistry fit into a single hour: extremely intense and very educational.

Can I just tell you that I am deeply grateful for Dr. Hainline, our metabolic specialist?  The man is my hero.  He never fails to have answers for problems with Superkid that have troubled me for years.  Dr. Hainline's answers don't always make the problems easier to deal with, but they give me something to hang on to, something to use, and sometimes even something to blame.  I am absolutely certain that one of the greater purposes of our Lily's brief life was to introduce us to Dr. Hainline.  

Case in point:  the immunologist we met with earlier that day was not exactly sensitive or sympathetic.  Also, I'm pretty certain he wasn't big on reading patient charts before walking into exam rooms, either.  His use of the phrases, "We've just wasted $2500 of lab work to prove to you your child is normal" and, "Go home and be thankful your child is healthy," were proof of that.  

After a very different meeting with Dr. Hainline, in which he had answers to all of my concerns, I drove away in my mini-van and cried.  I knew, without a doubt, that had it not been for Lily, who introduced us to Dr. Hainline, that I would be taking Superkid to specialist after specialist, looking for answers, and getting both sympathetic and unsympathetic responses that amounted to, "We don't know."

It overwhelms me.  Not just the recognition of how Lily's time with our family continues to have meaning and impact.  But also the recognition of how much love and sacrifice must have gone into Lily's decision to come to earth in such an imperfect body.

I need to take a deep breath and go get some tissues.  I'll be right back.

Okay.  So, I'm gradually learning more about the implications of metabolic disorders, particularly mitochondrial disease, which is what they suspect Superkid has in a mild form. I'm finding it much more difficult to educate myself about mitochondrial disease than it was to educate myself about congenital heart disease--for one thing, mitochondrial disease is so new and the various ways it presents itself are so different; there is no road map.  I'm also finding it much harder to discuss Superkid's mitochondrial disease with people.  As difficult as it is to discuss the possibility of future heart surgeries with others, at least we know what that future is and what it entails: we've done heart surgery,  so have a lot of other families;  it's very serious, but it is understandable.  I don't know what to say about mitochondrial disease, on the other hand; not only do I barely understand what it is, but I have absolutely no idea what a future with mitochondrial disease holds.  It's taking me much longer to adjust to this diagnosis and learn how to deal with it than it took when we learned about CHD's.  

I guess that is why I started this post with some thoughts on running races.  This is no short sprint I am running, as a mother.  I'm pretty sure it is a marathon and I've already lost a couple of toenails.  Then again, perhaps I'm not the one running this, but the one being pushed, Team Hoyt style.  For I have to admit, I'm not naturally inclined to accomplish the things that I have, thanks to the strength and well-timed nudges of my children.  And when I look at it that way, how can I not be grateful that they are willing to let me accompany them?

       

A Time and a Season

Not long ago, I was at the dentist or some other place where the person I was talking to didn't know me very well.  We'd already discussed that I had three children at three different schools.  Somehow, I said something about sewing, which led the conversations to things I liked to make, and eventually, the person I was talking to said something like, "Wow!  You are amazing!  How do you do it all?"

Like I said, it was someone who doesn't know me very well.  Or else they would know that there is toilet paper all over the floor of my children's bathroom, there is mascara spilled in my bathroom sink, a load and a half of dishes waiting to be done, a mysterious smell coming from my son's bedroom, a kitchen floor that hasn't been mopped for.....a while....., and a freakish spider invasion in the basement rec room.  I don't do it all.  I pretty much do what I have to do and what I want to do, and often ignore the rest. 

Here's the thing.  Along with the blogs that I check on regularly to get ideas for my house, I have another group of blogs that I check on regularly to get or give support to other families finding their way around Holland.  Each day, I find myself viewing the inside of two very different worlds: the shiny, pretty world where children pose in bright, handmade clothes on slipcovered couches and painted chairs, with burlap banners proclaiming the joy of the season behind them, as their mothers pull another batch of their signature cookies from the oven......and the less comfortable world where the children pose with their latest feeding tube or portable heart monitor next to a stack of laundry that needs folding while their mothers try to sound brave about the surgery that is around the corner and the fact that they haven't had a decent night's sleep since they came back from their last hospital stay.  I take notes on things I can replicate in my own home from the shiny world, and I make lists of people to pray for and symptoms to watch for from the other world.  It is a strange dichotomy.

During those times when I struggle with the contrast of those two worlds, I have to remember that there is a time and a season for all things.  I have to trust in a loving Father in Heaven, and have faith that He has a plan for all of His children.  We are each here to learn and to grow and--especially--to experience joy.  How we discover that joy in our lives, despite our individual trials, is up to us.  We don't all experience the same trials nor do we share similar opportunities for personal learning and growth, thank goodness!  Our experiences are going to to be as unique as we are.  The timing of our tests and our blessings and even our miracles are going to be different, too.

A time and a season.   Things can change so quickly.  I found these pictures taken on a family vacation, just before Superkid was diagnosed with her congenital heart defect.

And these, taken a few weeks after Superkid's diagnosis, when we were at Boston Children's Hospital, awaiting an experimental treatment that would hopefully delay open heart surgery. 

I could not have guessed, on the day the first set of pictures was taken, what twists and turns my own personal journey was going to take.  I could not have imagined, then, what it would be like to learn to insert a feeding tube into my baby's nose or what it would be like to select a place to bury my baby.  In the second set of pictures, I was learning to imagine those things, but I couldn't yet envision how my life could ever be "normal" again. 

Is my life normal, yet?  Not really.  Not in the way I thought it would be, when the sun was shining as I dipped my baby's feet in the water.  But it is also different, and better, and more manageable than I imagined it would be when I cried that day in the garden at Boston Children's Hospital. 



Those times and seasons are ever changing, and none of us can ever predict what new experiences will be ours with the next breeze.  For some of us, the tragedy of our day is running out of glue sticks before finishing the wreath we wanted to make, and for others the measure of a successful day is one in which our child didn't have to be admitted to the hospital.  Let's be kind to one another, recognize that we are all doing our best with what we've been given, and support one another as we go through these times and seasons at our own pace.  If an empty glue gun is currently your only concern, then pray for the mother who is wondering how much longer she'll have a baby to hold.  And, if you are just hoping to come home from the hospital today, then know that this, too, shall pass; there will be time to make other memories and maybe even a wreath or two.

May I invite you to rise to the great potential within you. But don’t reach beyond your capacity. Don’t set goals beyond your capacity to achieve. Don’t feel guilty or dwell on thoughts of failure. Don’t compare yourself with others. Do the best you can, and the Lord will provide the rest. Have faith and confidence in Him, and you will see miracles happen in your life and the lives of your loved ones. The virtue of your own life will be a light to those who sit in darkness....Wherever you have been planted on this beautiful but often troubled earth of ours, you can be the one to “succor the weak, lift up the hands which hang down, and strengthen the feeble knees."

-Dieter F. Uchtdorf

Heart Stories

A fellow CHD mom I really admire, Stefenie, is hosting a special link-in party today, at her blog, When Life Hands You a Broken Heart....Create Hope.  She's inviting other heart moms and families to share their stories with each other.  


I've already written quite a bit about our experiences with congenital heart defects, trips to doctors' offices and hospitals, and the like.  Today, I want to share with you what it was like to receive our initial diagnoses:

We were expecting our third baby, a girl, when I had a life-altering experience.  I remember distinctly, how I stood in the kitchen, loading the dishwasher as the late summer sun streamed in through the window.  I could see my two children playing in the grass outside, and I thought about them as I gathered another stack of plates to rinse.  Remembering the chubby, good-natured babies they had been, I anticipated with pleasure what it would be like to take care of their soon-to-be born sibling.  It was at that exact moment that I received a message, unspoken by any voice, but distinct enough for me to know it wasn't my own thought or imagination.

"This baby will be different."

Startled, I let the plates drop into the sink, and leaned against the kitchen wall.  I could see my children tossing sand out of the sandbox they played in, hear a bird chirping through the open window, and feel my unborn baby kicking....but time seemed to have stopped.  I knew, right then, that "different" didn't mean my baby wouldn't be chubby or good-natured.  Different meant that something was wrong with my baby.  So I asked, "What is wrong with my baby?"

And the answer came.  "That doesn't matter right now."

I sank then, awkwardly, to my knees, and prayed, "Tell me what to do, please show me the way."  And I was given just a few tasks that should be done before my baby was born. 

I spent the next few weeks mourning the loss of "normal" and trying to come to terms with "different."  I cooked and cleaned and organized, just in case I would have to spend more time at the hospital with our new baby.  I shared my experience with my husband, and instead of reassuring me or blaming my fears on hormones, he quietly said, "I know," and we held each other and cried.

She came into the world along with the first snowfall of an early winter, more than four weeks ahead of her due date, and two weeks shy of a scheduled c-section.  As the labor pains started and increased in frequency, I told myself, "It's just that she's going to be early.  That's it, she might be a little smaller than the others, maybe harder to feed."  Despite the reality of my early warnings, I hoped for a less dramatic outcome than the ones I wondered about late at night.

When the doctor pulled out our new baby, my husband and I braced ourselves.  But the sweet baby who was placed in my arms--though a little smaller than her older siblings had been--was perfect.  The prettiest newborn we'd had yet, she curled up into my arms and nursed with little difficulty the first time.  Keeping her in the room with us that first night, my husband and I kept looking at her, marveling at her miniature fingers and sweet rosebud mouth. 

Days and weeks and months passed.  On the surface, there was nothing extraordinarily different about the newest member of the family.  There were small differences in behavior and feeding that I attributed to her being her own little person: she was a little harder to nurse, she took shorter but more frequent naps, she stayed petite and didn't get the rolls and dimples of her older siblings.  But still, I was nagged by the knowledge that something just wasn't right.  At each well-child visit, I would question the doctor about her weight gain, her feeding habits, the funny way she arched her back sometimes....only to be reassured that she was fine. 

Until her nine-month well child visit.  This time, the doctor shook his head as he looked at her chart.  Superkid hadn't gained any weight since her six month check up.  This time, the doctor listened very carefully to Superkid's heart with his stethoscope.  For long minutes, we sat quietly, as he listened.  "I'm not sure if I'm hearing it right, but I think I hear a little murmer, there," the doctor told me at last.  "It's probably nothing, but I like to be cautious with things like this.  Let's have a cardiologist look at her."

Strangely, instead of being alarmed, I felt relieved.  I knew the long wait to find out what was wrong with our baby was almost over.  When we sat down to get the results of the echocardiogram from the pediatric cardiologist, it was like having the curtains opened to bring sunlight into a darkened room.  Did we like the room we saw?  Not particularly, but finally knowing what we were dealing with and being able to get up and move around was better than sitting in the dark.  Mitral valve stenosis, a congenital heart defect, was what made Superkid different.

Things happened very quickly from that point.  We went from having no diagnosis to experiencing symptoms of severe heart failure in less than one month.  Superkid was desperately ill and in need of heart surgery within three months.  We spent most of those three months in the hospital.  The answer to all of the questions you might ask sympathetically--was it awful?  were you terrified?  wasn't that exhausting? --is yes.  It was all those things, and then some.  But it was not surprising, and it was not something we weren't prepared for.

I believe that God recognized that I would need some time to digest and accept the idea that this baby would be different in a way that would challenge our whole family--not just once, but many times and many ways.  I am incredibly grateful for a loving Heavenly Father who gave me, His daughter, a gift of time and preparation.  "Before I formed thee in the belly, I knew thee; and before thou camest forth out of the womb I sanctified thee..." (Jeremiah 1:5). 

Is my experience unique?  Perhaps.  Many of the heart parents I know were caught off guard by their child's diagnosis.  I am convinced, however, that the parents of children with special needs are prepared in some way to take care of their children.  They have something that only they can give, a contribution that only they can give, and that is why God entrusted them with the care of a "different" child. 

To those who are just beginning their own journey into a new world of diagnoses and doctors and hospitals and long nights willing the heart monitor to just keep beeping.....then I offer you these words of encouragement:  Trust yourself, that you have it in you to develop the skills you need to parent this child.  Trust in a loving Heavenly Father, that He has already shaped and prepared your for what is ahead, and that he will answer all your prayers--even the ones you don't know how to say, yet.

If you would like to read about the diagnosis of our second heart baby/fourth child, or find out more about our experiences with Superkid and ongoing medical issues, click on any of the following links.

Maiden Voyage: The First Posting

A Call from the School Nurse 1

A Call from the School Nurse 2

Memories

Love: 400 Extra-ordinary Days

Adventures with Superkid

If you've recently stumbled upon my blog, you might have come for some of the sewing or craft ideas I've been posting (my goodness, I'm getting full of myself, aren't I?).  It's only been in the last few months that I've had the time, energy, or inclination to do that kind of stuff, and it is fun to share that on my blog.  My blog actually began as an extension of the CarePages I was keeping for my two daughters, Superkid and Lily.  (If you want to know about CarePages, click here.)  Today's post is an update on Superkid and some of her ongoing health challenges.....so no crafts today!  (But I did make that twirly skirt she's wearing.)

Some of you are aware that Superkid was born with a heart defect called mitral valve stenosis.  Her own mitral valve only worked for about a year, by that time it was causing severe enough heart failure that it had to be replaced by an prosthetic (artificial) valve during open heart surgery.  Superkid's new valve puts her at risk for blood clots, so she takes a blood-thinning medication called Coumadin.  (You can read more about that here.)  The other tricky thing about prosthetic valves is that they don't grow.  Superkid's prosthetic valve has to be replaced as her heart outgrows it.  She received her second valve in December, 2008.  It looks like this:

As if that weren't enough of a challenge for one little person, Superkid has had to deal with several others, as well.  

Her heart failure was severe enough prior to her first surgery that she had to have a feeding tube that went directly into her intestines.  We used this at the time of her initial heart surgery to help provide her with additional nutrition and calories that she didn't have the energy to ingest by mouth, both pre and post op.  We used it for several months after surgery to help her get extra calories she needed to catch up.  We also used it for a couple of years following surgery to administer her heart meds, until she could handle taking them by mouth.  All that remains of her feeding tube now is a small, closed hole on her tummy, which Superkid refers to as "my other belly button."  Up until last year, Superkid was followed by a gastroenterologist for issues related to the feeding tube and what was thought to be reflux.  (Turns out what everyone thought was reflux was actually discomfort that seems to stem from pressure changes in her heart and fluid issues.)

A few months after her first heart surgery, we started to notice that Superkid's eyes didn't always track together.  This was diagnosed as an eye-muscle disorder called intermittent exotropia.  Corrective lenses helped a little bit, but the only permanent solution for this problem is--you guessed it--surgery.  Taking a blood thinner makes even the most minor surgeries very complex, so Superkid's eye surgery in June of 2009 put us in the hospital for a good two weeks--longer than her open heart surgery six months prior.  To give you some perspective, the eye surgery that she had is normally an outpatient procedure.  We continue to see a pediatric opthamologist to monitor Superkid's eye muscles and vision.

And then there are the migraines.  Superkid gets migraines.  Severe headache can be a sign of a blood clot or hemmorrhage in the brain--two things that Superkid is at risk for.  She's had a litany of tests (from CT scans to sleep studies) with the conclusion being that Superkid gets migraines for no obvious reason.  They are awful for here, but fortunately they don't last more than four hours (so far).  We are getting better at determining what triggers them: chocolate, excessive juice, sugar, late nights, etc.  She only gets them in the morning, so at least they are predictable that way.  So, we started to work with a neurologist on those.  

Pneumonia is another issue.  If Sariah gets a cold, it more than likely turns into pneumonia.  I've become pretty reliable at knowing when the pneumonia is starting: sometimes I can catch it before there is even much indication of it in a chest x-ray.  She's never had to be hospitalized for pneumonia, although it has sent us to the ER a couple of times.  Anitibiotics and breathing treatments always clear it right up.  It's just that she gets it sooooo often: three times between the first day of school and the first of December, this last year.  This year, her pediatrician turned us over to a pulmonologist.  Everything that was easy to diagnose was ruled out: her pneumonia isn't caused by heart failure, lung damage, asthma, or any obvious immune disorders.  Our pediatric pulmonologist, at a loss for any easy explanation, is sending us on to a pediatric allergist, to see if undiagnosed allergies could be the cause of her frequent pneumonia.

In case you are having trouble keeping track of everyone, here is a list of all the medical specialties we've covered, so far:

Cardiology

Cardiothoracic Surgery

Pulmonology

Neurology

Gastroenterology

Allergy

Opthamology

Infectious Disease (did I mention that Superkid is MRSA positive?)

Nutrition (went with the feeding issues early on)

Anesthesiology

Radiology (for all our xrays and assorted other procedures)

and we're about to add

Psychology

and Child Development

because Superkid just isn't picking up reading the way I hoped she would.  The motivation and desire are there,  but Superkid's frustration is increasing exponentially as we near the end of kindergarten.  When she asked me one day, after a particularly difficult reading homework assignment, "Do the letters jump around on the page for every reader, or just me?" I could tell that it was time to get some extra help.  I've read about studies that show children who have been on heart/lung bypass have an increased rate of learning disorders, so we're going to have some educational testing done.  Whether or not they make a diagnosis, I'm hopeful that through the testing we'll get some tips for helping Superkid learn to read in a way that works for her and her unique learning style.

The other specialty that follows Superkid is 

genetics and metabolism.  

Ever since Superkids was little, and we were dealing with new diagnoses of eye muscles and reflux, I've been asking our doctors, "Is there something else going on?"  I was always told that this was typical for heart kids; many children with CHDs have accompanying other issues that most doctors blame on their hearts.  After all, inadequate blood flow or poor nutrition due to heart failure can cause so many other things to go wrong.  

When our daughter Lily was alive, she had a lot of feeding and digestive issues.  A very bright, caring third year resident was determined to find a way to improve Lily's digestion, so she called on the metabolic expert at our children's hospital, Dr. Brian Hainline, MD, PhD.  He special interests are Inborn metabolism errors, molecular genetics of fatty acid metabolism.   I've been told that Dr. Hainline is one of only about five experts in this particular area of medicine within the United States.  Don't ask me what any of that means; I already feel like I have to get a degree in Chemistry just to be able to converse with him.  Since our first meeting with Dr. Hainline, I've decided that he is one of the most caring, engaged physicians we've ever encountered--in his own, unique way.  Dr. Hainline was able to answer a lot of the questions that we had about Lily.  The answers weren't easy to get, but the knowledge made us better able to care for and comfort her during the remainder of her time with us.  

Dr. Hainline also told me that he'd like to meet Superkid.  He was the first doctor to agree with me that Superkid's various medical issues might not be heart related.  In fact, he believes that many of the children who have CHDs and accompanying health issues aren't necessarily correctly diagnosed: he believes many of them have overriding syndromes that caused their CHDs and the other problems, rather than blaming the CHD for everything.  The problem with this radical concept is that science has yet to discover most of those syndromes.  Dr. Hainline had been able to determine that Lily had some type of metabolic disorder but had not been able to pinpoint which one prior to her death.  He has been working with Superkid to discover if many of her health issues are a result of a metabolic or neuro/muscular disorder.  

We don't have any answers, yet.  Initial tests have been inconclusive.  After our last appointment with him, in December, Dr. Hainline said that he'd like to review how Superkid handled the winter.  Would she miss a lot of school?  (20 absences and 6 tardies, so far, due to illness.)  Would she continue to have pneumonia and migraines? (Yes.)  Would she have a growth spurt?  (Not a spurt, exactly.)  How would she do at school?  (Not as well as we hoped.)  These are the things he'll be reviewing as Dr. Hainline considers our next course of action.  And this will take some considering.  If Dr. Hainline feels that additional testing is needed to make a concrete diagnosis, that testing could get pretty invasive.  We're talking muscle biopsy in a patient on blood thinners.  Not fun.  Painful.  And it is doubtful whether or not an official diagnosis would be helpful.  Treatment for many metabolic disorders is somewhat behind the scientific community's ability to diagnose them.  It's a relatively new field of study.

So, that's where we're at: between a rock and a hard place.

It brings our list of specialists we've met up to 14.  Looking on the bright side, Superkid hasn't had to be treated by anyone in 

Dermatology

Endocrinology

Oncology

Nephrology

Orthopedics

Otolaryngology

Plastic Surgery

Rheumatology

or Urology.

Am I the only one who is disturbed that our list of specialists we've met is longer than our list of specialists we haven't met?  I'm afraid that I've reached a level of experience at which I am obligated to go back and get a nursing degree.  Seriously.

Well, if you've read this far, it's probably only because you are related to me or because you can relate due to your own ongoing medical challenges.  I have to tell you that the reason Superkid continues to consider all her doctor's appointments to be social calls and the reason I'm not yet completely insane is because we have such an amazing children's medical center.  It is staffed by some of the most caring, sensitive, all-around nice doctors, nurses, techs, and staff.  Yes, we've met a few people along the way who didn't make our list of faves, but they've been few and far between.  As homesick as I get for the mountains, I don't know how I'll ever be able to leave these wonderful people who have given our entire family such stellar care.  If anyone reading this needs a recommendation for any of the specialists we've seen and lives in the Midwest (or is motivated to travel to get care from one of them) feel free to leave a comment with your email address.

Advocate

ad·vo·cate

  v. ad-vuh-keyt; n. ad-vuh-kit, -keyt] verb,-cat·ed, -cat·ing, noun

–verb (used with object)

1.

to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.

–noun

2.

a person who speaks or writes in support or defense of a person, cause, etc. (usually fol. by of): an advocate of peace.

3.

a person who pleads for or in behalf of another; intercessor.

4.

a person who pleads the cause of another in a court of law.

-from Dictionary.com

Excuse me for a moment while I climb atop my soapbox.

If you have ever loved someone, then you are aware that with love comes responsibility.  The responsibility to care for and protect the ones you love.  During the different times and seasons of love, sometimes this responsibility can be a heavy burden to bear.  Trying to care for and protect an adult suffering from the consequences of addiction is a very different experience than caring for and protecting a curious toddler who is constantly climbing and exploring.

I believe very strongly that part of this responsibility includes standing as an advocate for the ones you love.  As a mother, specifically, it is my responsibility to speak in support and defense of my children in regards to their needs.  While there are many social, clerical, and government organizations out there who share this mission, none of them love my children and know my children the way I do.  Therefore, none can be a better advocate for my children than I can.

Let me share two examples with you.  

Example A:  I had a conversation with a fellow mother who shared some of the frustrations and difficulties she was having with one of her children.  During the course of the conversation, we bounced ideas off of each other.  I voiced a few suggestions.  By the end of the conversation, the other mother had a plan of action.  She was ready to make phone calls, gather resources, find a helpful doctor.....she was ready to take action.  

Example B:  I had a conversation with another mother.  This mother also had frustrations and concerns about the behavior of one of her children.  I listened, and agreed that her situation was difficult.  I consoled her.  I voiced a few suggestions of things this mother could try and resources that she could seek in order to help her child.  For every suggestion I gave, the other mother had a reason she couldn't use it.  A book to read:  why should she read it knowing her husband wouldn't and then she'd be the only one using the disciplinary techniques?  A trip to the doctor: the child hated doctors and would scream the whole time, why bother?  A conference with the child's teacher: she just knew the teacher hated her child anyway, what good would that do?  By the end of the conversation, I felt as down in the dumps as my friend.  She thanked me for listening, and sighed, "I guess I'll just have to keep hoping and praying that my child will change."

Which of these mothers was ready to be an advocate for her child?

I hope you answered the first one.  Don't get me wrong, I believe in the power of prayer.  But I also believe that an integral part of faith is action.  Pray all you can for help as a mother, but for heaven's sake, jump up and DO!  

If you walked into the kitchen and saw your diapered darling climbing onto the top of the refrigerator, would you kneel in prayer and hope for the best?  Of course not!  You'd say that prayer as you rushed towards the refrigerator, arms outstretched, and you'd pull that baby down from his precarious perch and you'd tell him no and then you'd come up with some very creative way to keep that child from ever climbing up that refrigerator again.

I feel strongly that God has not left us to fend for ourselves.  He has given each of us gifts that give us insight and inspiration when we need them most.  We can access these gifts particularly in our roles as mothers.  Sometimes you just know that your child has a need that is not being met.  This is the time when you are called upon to use those God given gifts and act as an advocate for your child.

Talk to the teacher.  Go to the doctor.  Meet with the therapist.  Plead for the resources.  Join the support group.  Change the babysitter.    Look for the clues.  Research the diagnosis.  Bring concerns to the school board.  Learn the lingo.  Find the right doctor.  

These are the things that no one can do for your child better than you.

A fellow heart mom, Stefenie, shared a story on her blog she'd heard about another family.  Their son was born with a complex heart condition that eventually necessitated a heart transplant.  As a baby, however, he was misdiagnosed.  The original diagnosis?  Allergies.  Allergies.

Science is not perfect.  Doctors do the best they can, but they aren't able to spend 24-7 with each of their patients.  That's something only a mother can do.  And doctors don't have those God-given gifts that allow them to serve as the perfect advocate for each of their patients.  That's something else only a mother can do.

I'll admit, it took a while for me to step up to the plate and take on the role of advocate.  It's a skill that I'm still developing.  But I've improved.  

Before Superkid was born, I knew there was something about her that was different than my other children.  I was told, very clearly, that she would have physical challenges.  My husband received the same message.  We were so prepared for her arrival this way, that both of us were a little shocked when she received a 10 on her APGAR score, was handed to us pink and tiny and perfect, without any evidence of anything that set her apart from her healthy siblings.  For months, Superkid seemed fine--she just didn't get chubby the way my other babies had--but the warning I had been given was constantly there: something was different.  The pediatrician chalked it up to her having a different metabolism than her siblings......until her nine month well-child visit, when he realized that Superkid hadn't gained weight since her six month visit, and heard a faint heart murmur.

At that point, things happened very quickly, and my husband and I often look back on some of our initial experiences and decisions during the first few months of her diagnosis and second guess ourselves.  We think we could have been better advocates.  We sometimes wonder what effect different actions on our part would have had on Superkid's condition, and we've had to learn to forgive ourselves and recognize that we're all on a learning curve.  Some lessons have to be learned the hard way.

I guess my point is this:  if you have a genuine concern about one of your children, take action.  Pray for support and guidance and then get up and go find the help you need.  Don't wait for things to change or things to get worse or for someone else to come and diagnose and fix the problem.  Advocate.

The following video really doesn't illustrate how to be an advocate for your child.  I just feel like I'm supposed to post it on the blog, so humor me.  I came across it yesterday, while I was looking for another file.  It is 19 seconds of footage that my husband shot of Superkid and I, soon after she was diagnosed with her CHD.  At that time, we'd been trying to explain to our doctors brief "episodes" that Superkid was having.  They were very frightening to us, but never occurred in a doctor's office and the portable heart monitor Superkid wore for several days didn't detect any problems.  We shot this video to show to our doctors so that they could see what we were seeing at home.  As we later learned, the little noise Superkid was making is something called "grunting", a classic sign of respiratory distress and heart failure.  I believe that Superkid was admitted to the PICU of our children's hospital just hours after my husband filmed this.  If you ever see your child or another child breathing like this, you need to get them to a ER very quickly, and urge the staff there to take a chest xray to look for fluid in the lungs.  

Friday Funnies....and Not So Funnies

Part of our life in this place I call Holland is that we spend a fair amount of time at doctors' offices.  We go through some periods where we have many, and occasionally we have been known to go as long as eight weeks without a trip to see a doctor, or spend time at a hospital.  There are a few offices where all I have to do is say, "Hi, this is...." and the person on the other line will say, "Can you be here by 3?"

Actually, that is kind of an exageration.  Kind of.  But, between Superkid's ongoing medical issues and the others we faced while Li'l Angel was with us, I have logged quite a bit of time at various hospitals and outpatient clinics and offices--as have all my children, since they often tag along.  If there were frequent flyer miles for such a thing, we would be in Hawaii right now.

As you can imagine, these appointments can be very stressful.  Another mother of a child with special medical needs, Shawni (of Life), reminded me in this recent post that I'm not the only mother who has ever come home from a doctor's office with a few more gray hairs.

So, for the sake of posterity, and to let other MedicalMiles Moms (haha!  Get it?  Like SkyMiles!  I should market this!) know they are not alone, I present you with my own Top 3 Medical Misadventures: Office Edition.

1.  Superkid was just over a year old when she and Justone and I went to see her gastroenterologist.  We had a long wait.  When the doctor came in, I had several concerns that I needed him to address about Sariah's g-tube feedings, comfort, etc.  I even had a video for him to watch so that he could see a behavior we were concerned about.  Superkid was cranky and tired.   Justone was cranky and bored.  The doctor and his assistant were very patient.  Justone became cranky and bored and hungry.  He was showing me that he was ready to leave in every way that a four-year-old can.  I wasn't done talking to the doctor.  So Justone grabbed my shirttail, and tugged it as he walked towards the door, whining, "Mom, let's GO!"  The shirt I was wearing was one of those vintage-western types, with mother-or-pearl snaps up the front.....which popped undone.  All of them.  And, since Justone was walking away--the hem of my shirtail in his hand--my shirt walked away with him.  AAAAAA!  I'm still blushing!  The two doctors blushed, too, stammered unintelligibly, and quickly excused themselves from the room.  Was it a coincidence that we soon moved across the country?  I think not!

2.  Li'l Angel was our most prenatally photographed baby.  Every time we went to see the perinatologist, they took lots and lots of pictures.  When I was pregnant with the other babies, we'd always made a big deal about letting the siblings come along to an appointment, especially if it was an ultrasound.  We were more cautious about that with Li'l Angel, considering the circumstances.  Then one week, I decided to take all three siblings along with me; the baby had been moving a lot, I wasn't scheduled to have extra tests at that appointment, and it seemed like a good day to let them tag along.  (Ignorance can be soooo bliss.)  Well, we ended up waiting in the waiting room for over an hour--first time I'd ever had to wait more than 10 minutes at this particular office.  I hadn't brought toys or snacks, since it was supposed to be a "quick" appointment.  We were finally escorted to the exam room, where we waited an additional 30 minutes.  If you have children, you can imagine how things were at this point.  The children were all over the place....over the table, under the sink, inside the bathroom, outside the bathroom, around the expensive 3-D ultrasound machine.  The classic, never-to-be-forgotten moment of that appointment was when I realized Justone was staring, completely transfixed, at the back of the bathroom door.  "Mom, what is this?" he asked in a tone of hushed wonder.  "This" was the very helpful poster demonstrating how to do a monthly self breast exam.   I somehow found the fortitude to explain what a monthly breast exam was to my six year old son and his equally curious sisters.  Thus, I became the only woman on the planet whose young children remind her to do her monthly breast exam.

4.  We lived in Connecticut when Endeavor went to kindergarten.  I took her in to see the pediatrician for a well-child visit before school started that fall.  She'd had her vaccinations the year before, so I'd told her she wouldn't be having any shots that day.  I hadn't realized that the state required all school-aged children to have a blood screening for lead and anemia, which involved a finger prick.  Endeavor was not pleased when she was informed of this during the exam.  I did my best to help the nurse hold her still so that she could get the single drop of blood required for the screening.  As I did so, I had to wonder who the child in my arms was, and what she'd done with Endeavor--it had just been a year before when Endeavor chatted calmly with the doctor and nurse as they injected vaccines.  The nurse captured the sample, put a tiny, prick-sized bandage on Endeavor's finger, and exited the room.  At that point, Endeavor went from being merely upset about the pricking to being absolutely hysteric.  Suddenly, she was jumping up and down, waving her arms in the air, shrieking as if she'd just been the victim of a stabbing.  With each wave of her pricked finger, blood flew across the room, spattering the walls, the exam table, my white t-shirt, the nurse who opened the door to make sure no one was being murdered.......all of that blood coming from the very tiny prick on Endeavor's finger.  Seeing her blood all over the room only increased Endeavor's hysteria.  It took the efforts of both myself and two nurses to hold her down and firmly instruct her that the only way her finger would stop bleeding was if she would calm down.  I'm exhausted just writing about it!

Ahhh, the memories!  There are so many others, but those were the three that came to mind, first.  Best wishes to others who are logging their own MedicalMiles and making memories to laugh--or cringe--about for years to come.  Just remember, laughter really is the best medicine!