Tuesday, October 4, 2011

Live Life in Wonder

Meet Kristen at Live Life In Wonder!  I have thoroughly enjoyed getting to know Kristen and her awesome family over the last few months.  She's one of those people that is just so easy to connect with.  I have dropped her emails numerous times with quick questions or when I need a little extra encouragement.  Her replies are always uplifting, even if they're just about day to day life.  She challenges me to be an advocate for my child's care, to think outside of the medical box, and to have fun with therapies and appointments.  Please enjoy reading about this lovely lady and her lovely family.

Q: Tell us about your family.  

A: Mike and I have been married for 7 years and we have two children.  Cayman (3 years old) and Kobe (8 months old).
Q: If your child has multiple diagnosis, feel free to share them. 

A: In addition to Hydrocephalus, Cayman has two other brain related diagnoses - complete absence of the Corpus Collasum, and bilateral schizencephaly.  Middle and inner ear malformations have resulted in a moderate hearing impairment.  She had a minor heart defect, as far as heart defects can go, called True Vascular Ring with a right aorta arch, where typically the aorta extends from the left side of the heart.  And she was born with a stomach/small intestine malformation called Duodenal Atresia.  She has colobomas, where the pupils of her eyes are not round but rather the shape of a key hole and other eye defects that have reduced her vision.  Plus she has bone malformations, and so on and so on.  She has a lot going on diagnoses-wise.  All of which the geneticist believes to be summed up by a specific gene mutation called Charge Syndrome.

Q:Tell us about the moment you were told your child had hydrocephalus.

A: “When I grow up I’m going to be a mom” I would say as a child.  It was a big dream of mine.  When I was finally all grown up, married, and smartly planning for this dream of having a baby, I heard the word Hydrocephalus at 20 weeks pregnant.  I thought I was losing my dream and the plans I had for myself as a mother.  Turned out those dreams were not crushed or lost, just altered in a way that surpassed the greatness of my imagination.

Q: How has hydrocephalus affected your daily life?  Maybe give one "real life" example.

A: The most difficult part of Hydrocephalus for us has been the dependency on a device that can fail at any moment.  Cayman has had a total of 10 shunt related surgeries, with multiple malfunctions. During one of these failures, by the time we picked up on the signs, Cayman’s brain was already under so much pressure she declined fast, and the nearest hospital for her neurosurgery care is two hours away by vehicle.  She went into cardiac arrest and had no living pulse for two minutes before the local hospital revived her by CPR.  She was then flighted by helicopter and her life saved by an emergency shunt revision.  To know it is possible for those circumstances to re-occur any day is challenging.  I have had to learn to keep my worry in check, preventing it from paralyzing me in fear.  To recognize the areas where concern calls for some action from my part in the matter but knowing worrying is a useless draining of strength over the things I cannot control.

Q: Share a moment when you were frustrated or discouraged

A: Every illness when Cayman seems out of sorts there is always the thought in the back of our minds, is it a shunt failure?  Each and every time Cayman has vomited it’s urgent to decipher the cause of this symptom.  Most often we cannot do that alone without an evaluation from her Neurosurgeon.  We have made trips to the E.R. and at times gratefully learned it was simply the stomach flu but then spent hours fighting our insurance company to cover the bill.  Insurances are becoming more and more particular about emergency room charges and the policy is written that general illnesses are to be seen in a doctor’s office during regular business hours.  Vomiting falls under general illness and repeatedly we have had to explain to the insurance company why, in Cayman’s case, it cannot be considered general.  It could be a sign of something life threatening and must be evaluated regardless of the hour.  It has been frustrating fighting denied claims. 

Q:Share a moment when you found joy or hope.

A: Like all parents after receiving a serious diagnosis for their baby, there is a period of grief and readjustment the mind goes through.  There was a significant turning point for me in which I remember my mind stopped dwelling on what could have been and felt only the joy of my little miracle Cayman.  It was after reading a specific entry written by the Hydro Mom Lisa on her blog The Far Side of Complexity.  She had written about her daughter Elisabeth.  I cannot remember exactly how it went but it was something of this extent: “I do not regret knowing that kind of pain and heartache for it has made the joy all the more sweeter now.”  It was like a light going off in my brain!  Yes!  That joy!  I understood what she was talking about.  I have it!  I feel it!  And it’s there and taken in with such a deep measure of fullness all because my heart lived during a moment when it got to feel what it would be like without it.  It was the pain that bred deep joy in the small things, a lesson in not taking something for granted.  I cherish where that lesson has brought me. Therefore I could no longer see cause to complain.  I had been given a gift in which I am lucky to have learned it so early on in life.

Q:  What do you do to keep your sanity?  How do you take a break?

A:  I write and I take pictures.  I use to scrapbook but after becoming a mother I found it to be time consuming and messy.  So now I blog. 

Q:  What advice would you give to a family who has just received a new diagnosis of hydrocephalus?

A:  By far I always find this to be the toughest question to answer.  I am by nature a better listener than speaker.  Believe it or not, coming up with the right words does not come as first nature for me.  And how one walks along this path of acceptance, whether it’s long and jerky strides, or short and blissful steps or maybe fast leaps ahead and then falling back some, I have learned there are many different ways of walking.  I am careful to stay away from words that tell a person how they should feel during their grief.  I recall hearing the advice from many to not worry.  I never found that useful. For instance, how does one do that when they learn their child is in danger?  That is a powerful emotion!  That’s like trying to stop a stampede with a single sheet of tissue paper.  Who ever has successfully stopped worrying simply because they were advised to?  Yes, worry is not of any productive worth but the most helpful tool I arrived at was to find that cathartic therapy for myself.  For me it was writing, taking pictures, and blogging.  I love the art of weaving words and pictures together to tell a story, and in doing so I set out to find the beauty and consequently discovered it in more places than expected.  It’s not so much about what I can say that is conducive as much as what I encourage a person to do during their journey that will help them see the brighter side of things. Because a grieving heart struggles to feel joy, and because joy does not come visiting without an invitation, it requires action.   

Q: How do you deal with difficult questions from onlookers?  

A: I first realize that if I am uncomfortable answering then they will be uncomfortable receiving.  In a society that says blend in, go with the crowd, stick with the trends, strive for what’s popular, differences can be intimidating.  But what brings warmth and acceptance?  Always a welcoming smile!  I smile to let people know it’s okay to ask questions.  I actually love it when they do.  It’s an opportunity for this proud mama to share her little miracle.

Q:  What is one thing you wish families with typical situations realized about families dealing with special needs?

A:  Really I don’t see how we are that much different.  Yes we may have some added concerns but we are all so much more alike than different.

Q:  What is your dream getaway (either family, couple, or by yourself. . . or all three)?

A:  Mike and I would love, as a family, to take our little Cayman to Cayman Islands.  Currently she knows all of her ABC’s and someday she will be able to spell and recognize her name, I feel confident of that.  She already knows it starts with C-A.  I can imagine the fun it will be stepping into a tourist shop and watching her identify her name on T-shirts, mugs, pens, and magnets galore! 

A:  What is your favorite coffee (or coffee alternative) drink?

Q:  I don’t drink coffee.  I have the most dull beverage preference of all time – just plain ‘ol water.  Water it is for me all the time, from morning to night, and sometimes in the middle of the night too (especially now that I am a nursing mama).  Occasionally there is a sip of Pepsi or Sprite here and there when I crave that fizzy sweetness in my mouth but that’s rare.  And in the cold weather I do enjoy a warm cup of tea, Traditional Medicinal brand is my favorite. 

Q:  From reading your blog, it's obvious that you value a more natural approach to treatment.  Tell us about some of these treatments.  And what is it like using a natural approach with a child with many medical necessities? 

A: Homeopathic is a less traveled road and I completely understand why, there is a lot of quacks out there!  We went this direction for Cayman only because there is an amazing Naturopathic Doctor in our area that by past experience has earned our full trust and devotion long before Cayman and her diagnosis came along.  I have come to understand that he is one of a kind and a rare find for there are just not many that have the intelligence to practice with the detail and discernment like he has.  On top of his many Phd’s and over 25 years experience practicing and teaching homeopathic medicine he has a gift in this area of medicine.  I have never seen any doctor, medical or homeopathic, with more wealth of knowledge and wisdom than him.  He has single-handedly guided us in making the best decisions for Cayman’s health.  I am confident his recommendations have been right on for her.  A child with as many diagnoses and medical necessities as hers and to not be on any medications is unusual.  The homeopathic world and the pharmaceutical/medical world are so divided though.  I feel like we have our foot in each one of these places and it has been tricky.   One thing I wish for people to know is that there is a definite need for both of them.

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