Back in the Saddle & Leaning In

I wanted to be a part of a group of bloggers writing something every day for November, but alas, here I am, 10 days in and it hasn’t happened. My intentions were good, but I knew with the month starting off  in Houston for appointments for a week, it wasn’t likely to happen. Let’s face it, intentions are only half of what it takes to accomplish something. I need the motivation though, and am still going to try to make a stab at publishing on more days than not for the rest of the month. Lord knows, it’s not from a lack of experiences to share!!

I am missing my time here. I am missing the chance to “get it out” and move on. I am missing the chance to share some of the really awesome things happening for our family. So here we go.

Although my inclination, at moments, is to run away, I am instead, leaning in.



Leaning in to finding a solution to our medical coordination woes.



Leaning in to enjoying the fun things we have happening, almost as often as the "not fun" things, and to the precious people in our lives that make them possible.



Leaning in to finding a balance again in our lives. Working real living in AROUND our medical lives is NOT the way this works best!



Leaning in to our volunteer opportunities, and making them as much a priority as all the rest, because they really MEAN something in our lives, and others.



Leaning in to the learning that comes with new ways to help the kids medically, and praying for the time and energy to give them a chance to work.



Leaning in to the opportunity to share the knowledge we have gained after so many years in this medical world, and, God willing, leaving a legacy for others.



Leaning in to working on being the best mother/wife/sister/daughter/granddaughter/friend I can be. 



On this list of items worth leaning in to, is this blog. It's part of the balance thing. It's worth my time and energy. 



Silence very seldom means nothing is going on over here, and actually means quite the contrary.

Silence often means, you wouldn't believe it if I actually wrote it out!

Lots to update on....some awesome and amazing stuff, some not so fun stuff, and lots in between. 



Leaving you with much love and hugs. We are good...crazy busy, but good.

Just need to keep leaning in to this exceptional life we have been given!!

As the holidays approach, where are you finding the need to lean in?

Mito & Disability Benefits: Guest Post

One of the more daunting things I have had to face when it comes to my children's needs has been finding what benefits might be available, and then applying for them. When there is already so much going on in every day life to support a medically complex/special needs child, adding in a bunch of paperwork, and navigating an unfamiliar system can be overwhelming. It is worth the effort, and there is help out there to take some of the mystery out of the process.

Molly, at Social Security Disability Help (http://www.disability-benefits-help.org/), contacted me recently to ask if I would allow her to contribute to my blog with an article that could be helpful to my readers, and I jumped at the chance to have someone far more knowledgable than I to share this information. I have some additional information to share at the end of her article regarding Waiver programs, and some personal "words of wisdom". 

Applying for Disability Benefits for Your Child with a Mitochondrial Disorder

According to the United Mitochondrial Disease Foundation, mitochondria produce about 90 percent of the energy that the human body needs in order to function. There are many different diseases and illnesses that affect human mitochondria. Mitochondrial disorders affect people in varying ways and often cause a host of severe health complications.

Although adults can develop mitochondrial diseases later on in life, many individuals are either born with mitochondrial disease or develop it within the first ten years of their lives.  Caring for a child with mitochondrial disease comes with a unique set of responsibilities and challenges. Among these challenges is the added expense of specialty medical treatments, supportive care, and assistive technology. Although many of these things are required to keep a child with mitochondrial disease comfortable and healthy, they can also be very costly.

If your child has mitochondrial disease, you may qualify for Social Security Disability (SSD) benefits on his or her behalf. These payments can be used to provide your child with the things they need to live the healthiest lifestyle possible.

Is My Child Disabled?

To qualify for any type of SSD assistance, your child must have a documented disability. The Social Security Administration (SSA) considers children disabled if they meet the following criteria:

·       Your child does not earn a substantial income

·       Your child has a physical or mental condition that significantly limits his or her daily activities

·       Your child’s condition is expected to last at least one year or result in death.

In addition to meeting these criteria, your child must also meet very specific technical and medical requirements.

Social Security Disability Insurance

The SSA runs two separate programs that provide benefits to individuals with health conditions and disabilities. The first program—Social Security Disability Insurance (SSDI)—offers benefits to disabled workers and their families. Because eligibility for SSDI is based on taxes and work history, many children and young adults cannot qualify on their own record.

However, if a parent or guardian already receives SSDI, a child may be eligible to receive benefits on the qualified parent’s record. It is important to note that, if your child is over 18 but became disabled before 22, he or she is considered an “adult child”. Adult children may also qualify for SSDI on an eligible parent’s record.  This type of payment is called auxiliary or dependent benefits. You can learn more about this here:  http://www.disability-benefits-help.org/glossary/auxiliary-benefits.

Supplemental Security Income

The second disability benefit program is called Supplemental Security Income, or SSI.  SSI benefits are paid to elderly or disabled individuals who earn very little income. SSI has no tax or work-related requirements. For this reason, SSI is often the best option for young adults or children who haven’t had the opportunity to work or pay taxes.

To qualify for SSI, applicants cannot exceed very strict financial limits that are put in place by the SSA.  When an applicant is under 18, a portion of his or her parent’s income will be evaluated to determine whether or not he or she is eligible. This process is called deeming. To find out what types of income are deemed and what types are not, visit this page: http://www.socialsecurity.gov/ssi/spotlights/spot-deeming.htm.

Once your child turns 18, or if he or she is already 18, the SSA will only count his or her income to determine eligibility for SSI.

Medical Requirements

In addition to the previously mentioned technical requirements, your child will also have to meet very specific medical criteria. These medical criteria are listed in the SSA’s blue book—the official list of potentially disabling conditions and qualifying criteria. There are many different mitochondrial diseases and not all are listed in the SSA’s blue book.  

If your child’s condition is listed in the blue book, there will be a list of very specific medical requirements that you must be able to document in order to qualify. If your child’s condition is not listed in the blue book, he or she may still be able to qualify if their symptoms closely match those of another listing.  Depending on your child’s specific symptoms, he or she may qualify based on the following listings:

·       100.00-100.03- Failure to Grow

·       111.00-111.09- Neurological (covers motor dysfunction and seizure disorders)

·       112.00-112.12- Mental Disorders (covers autism spectrum disorder and developmental delays)

·       102.00-102.11- Special Senses and Speech (includes vision and hearing problems)

·       104.00-104.13- Cardiovascular

·       105.00-105.10- Digestive System (covers liver disease and gastrointestinal disorders)

·       109.00- Endocrine (diabetes)

·       106.00-106.07- Genitourinary (kidney disease)

It is very important that you collect thorough medical documentation of each of your child’s symptoms prior to submitting his or her application for disability benefits. Documentation should include records of his or her diagnosis, lab test results, history of hospitalizations, response to any treatments, and any other relevant information. You should also collect written statements from any professional adults who interact with your child on a regular basis. This can include teachers, doctors, therapists, or coaches. Each statement should outline your child’s symptoms and how they interfere with his or her daily activities.  The SSA requires these records as proof of your child’s illness. Without these records, it is not likely that your child will be approved. For a complete list of the documentation you will need, see the Child Disability Checklist- http://www.ssa.gov/disability/Documents/Checklist%20-%20Child.pdf.

Compassionate Allowance Listings

The typical application process can take months to complete. The SSA recognizes that individuals with certain conditions cannot be expected to wait the standard processing times. For this reason, the SSA allows people with severely disabling conditions to be approved for benefits in as little as ten days. This is called the Compassionate Allowance (CAL) program.  Fortunately, certain mitochondrial disorders are included among the conditions that qualify for compassionate allowances processing—including Pearson Syndrome, Alpers Disease, NFU-1 Mitochondrial Disease, MERRF, and Leigh’s Disease. To qualify for CAL processing, you do not need to fill out additional paperwork. The SSA will evaluate your child’s claim and expedite it accordingly.

The Social Security Disability Application Process

Once you have collected the necessary documentation and feel ready to begin the application process, you will be required to complete two different forms—the “Application for Supplemental Security Income” and the “Child Disability Report”.  Although you can complete the Child Disability Report on the SSA’s website, many applicants prefer to schedule an appointment to complete both documents in person.

It is important to remember that the application process for disability benefits is not simple and straight forward. In fact, many initial applications are denied. If your child’s initial application is denied, do not panic and do not give up. You are allowed to appeal this decision. Although the process can be difficult to navigate, many people find the end result to be worth the hassle. Once you are awarded benefits, you will be able to provide your child with the necessities of a comfortable and healthy lifestyle.

For more information, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.

Thank you, Molly, for the insightful article!! Sometimes, just seeing something simply laid out can remove some of the anxiety over delving into something like this.

I wanted to add to the information Molly shared, with some of the other benefits that may be out there for families with medically complex/special needs children.

Katie Beckett Medicaid Waivers
All states have Waiver programs, generally called "Katie Beckett" Waivers, although each state has specific names for those that they provide. These programs are technically Medicaid Waivers that allow the child's needs to override the income requirements otherwise placed on families to qualify for SSI. Each Waiver is a little different in what it provides, but all provide Medicaid benefits in addition to any number of other options to provide support. Most include either respite, attendant, or nursing hours; while some include alternative therapies, home modification money, and more.

Many states have a waiting list that can be, as it is here in Texas, as long as 10 years before you can access these Waivers, so getting on the list as early as possible is imperative, even if your child qualifies for SSI benefits at this time. Your income could improve, causing your child to lose the SSI benefits, but more importantly, these Waivers supplement the benefits even if your child continues to be eligible for SSI.

Words of Wisdom
I remember vividly how, in those early days when your just beginning to accept and acknowledge that your child may be delayed, or that they may have a chronic medical condition, that all you want to do is assume that your child will improve. That, especially ten years down the road, they will certainly not need this help. Please don't assume this.....be hopeful and aim in that direction, but be prepared by going forward and getting on the waiting lists for these programs. If, as we all hope & pray, it is not needed when they reach the top of the list, you can always decline the evaluation for the benefit. 

A Camp wrap up post is being worked on!! Have a wonderful weekend!!

25 Years of Wedded Bliss

Happy 25th Anniversary to the love of my life. You truly complete me.

Twenty five years ago on this day, I married the man I love. We were so young, and already facing such incredible trials, and yet, somehow we just knew this was what was meant to be. We knew that we grew stronger each day, together.

I remember the day far too vividly for it to have been so long ago. I remember it being the most amazing day of my life, even if it wasn't perfect, and even though you were sick. So very sick. I remember the flowers, the dresses, the people we love that were there for us. I remember the contingency plans "just in case", and how determined you were that it happen on this day, come hell or high water. I remember how grateful I was to have it official; how grateful I was to be your wife.

While certainly not the textbook perfect wedding, we never have done anything in the typical fashion, have we? All the parts that were important, were there.

I remember the early days, just you and I. We quickly became a pretty invincible team!!  We each grew into stronger people, independently & together. We faltered sometimes, and struggled, but we fought our way back to each other every time. It was together that we were strong, and capable, and whole.

I remember the dreams we had of having a family. Long talks about what our family would be like, what we wanted to share and teach our children, how we envisioned this life we saw in the future. And I remember the heartache of those early years, and how we supported each other through each and every one of them.

We have created an amazing family....far more amazing than we could have possibly hoped for. Way better than any dream we had....more complete than we could have envisioned. We have lived life more intensely, and more fully, than most, and we have never lost sight of each other.

It has never been easy, but it has always been worth it.

Last year, I faced the idea of a life without you in it. I was forced to contemplate how it all might look; how we would survive it. I realized that the strength you and I had built together would sustain us, but that I really, really need you. You always have my back, and I always have yours....and this is why we are so damn good together.

I love you.....to the depths of my soul....always and forever.
Thank you for loving me, flawed as I am, so completely.

And So It Begins: McNair Kid's Camp Fund 2013

Thanks to the generous support of friends and family, we began our journey to Camp Korey Friday evening!! We continue to need your help, if you can. See the end of this post for further information.

Thankfully, Madison's reaction to the anesthesia on Wednesday came under control; all the packing and running around to collect supplies happened; and all the phone calls to ensure everything was in place on the other end of this journey were made. We were off to the airport and ready to be in Seattle!!

Mother Nature had a few plans of her own, and our flight to Seattle took a detour. From a planned stop in Albuquerque, to Lubbock, TX for refueling, and back to Albuquerque where we then had to wait for a new crew before heading on to our destination.  We were scheduled to arrive in Seattle at 10:00pm Friday, but didn't actually arrive until 3:00am Saturday!! Twelve hours from arriving at the airport in Dallas, to leaving the airport in Seattle, made for a long, long night.....as evidenced by our leaving a bag at the McDonald's in the terminal and not realizing till we were loading our shuttle to the hotel!! Not just any bag, but our medical bag....the one with every single important thing we needed for this trip!! After a mad dash back to where it was left (with a stop at the ticket counter for a pass to get past security, and the loss of a water bottle at security), Michael was able to reassure the security person just beginning to examine the bag, that it really was ours and we needed it, badly!!


 Thankfully, all survived the adventure, and gratefully we had a day to rest before anyone was due at Camp. We needed it!!!

Sunday could not get here fast enough for Chance & Madison!! Especially Chance, who both returned to his beloved Camp Korey, but also turned 20 years old!!!

It was, as always, amazing to drive up to the front of Camp Korey....to see the place we love so much. It only got better as we made our way to volunteer check in and started seeing the people we love so much. Chance and Madison could not have been happier than they were in that moment.

Abby enjoyed some time in the "only child" status that evening, and then was more than ready to get there on Monday. Arriving to cheers, and seeing the faces of the people you have not seen for a year, makes all smile pretty big. Spending the afternoon waiting to get Abby checked in was an opportunity to drink Camp Korey in again. To sit and look out over the fields, take in the beauty that is this special place, and to spend time reconnecting with old friends, and making new ones.

The afternoon ended with meeting the nurse and counselor that are assigned to Abby. We went over all her medical paperwork, and chatted about my girl, and as we were wrapping things up, Abby's nurse shared the most amazing thing....She shared that she is there this year because of our family!! I wasn't quite sure what she meant, so she went on to explain that a friend of hers, a fellow nurse who has volunteered at Camp Korey before (and whom we adore), had been asking her to volunteer for a couple of years. Last year this friend shared our blog with her, and it convinced her she needed to be a part of this years Mito Week!!! Not only is she there, but she even got one of the McNair kids to love on and take care of!! How awesome and amazing is that!!

I cannot even begin to express how much this meant to me to hear.

Each year we wonder how our time at Camp Korey could possibly be as good as the previous year....and each year it just gets better and better. This year has already proven to be no exception!!

In part because of what happened Tuesday evening.

Michael and I were asked to attend a "friend-raiser" for Camp Korey, and to share our story. It happened at an amazing historic home on top of Queen Anne Hill, and was attended by some incredible people here in Seattle....people we hope will become a part of the Camp Korey family. I shared our story, and how profoundly Camp Korey has touched our lives, and was reminded how difficult it is to find the words to convey how life changing this week in the summer has been for my children....for our family. I did my best, and it seemed to have been well received. It was SUCH an honor to have this chance to give back, just a little, to this place we love so much. I hope we have a chance to do even more in the future!!

We have received a random text here and there from Chance & Madi, and there were pictures posted on Facebook of what appeared to be another totally messy food fight today!! Promise to share pictures when we get home!! We cannot wait to see them all on Friday and hear all about their week!!!

We still need your help to make this life changing time possible. We are about $575 from our goal amount, and desperately need to raise this money if at all possible. I am extending the fundraising time, and I am so sorry to have to continue asking. We are so incredibly grateful for the amazing support so many have already shown. Any amount is helpful, and it adds up quickly.

Donations can be made at www.youcaring.com/mccampfund or by clicking the link at the top right of this blog. If you prefer to send us the donation directly, please contact me at kass@swbell.net and I will get our address to you.

Again, thank you. More updates to come!!!

Why It Is Important: McNair Kids Camp Fund 2013

Wednesday was hard....physically & emotionally.

It reminded me why getting the kids to Camp Korey is so vital. Why having something to look forward to, and creating memories to hang onto, is so important.

 

Disney Channel & Iphone make it bearable

Madison and I started the day before the sun came up. We were on the road by 5am, and at our hospital by 6. By 7 she was in pre-op, where finding a vein willing to cooperate took two sticks, digging, and two different people to make it happen.

Madison made sure to get the name of the medic-turned-IV-placer so she could plug her into her phone, for next time.

Yes, my 16 year old daughter has a list of blood takers and IV placers for every hospital and lab we need to go to. Knowing when we find one that can make it happen, as painlessly as possible, we ask for them again.

There will always be the need.

By 7:45, she was doped up on Versed and rolling down the hall, away from me. I watched and marveled how "old hat" this is for her. How she casually (albeit a little drunkenly) chats with the nurses wheeling her away, and how, without trepidation she tells me she will see me in a bit. Then I sighed, because ever so often it hits me....this isn't "normal"...and she is amazing, brave, and incredibly forgiving to us all for what she must endure at our hands.

As I walked to the all too familiar waiting room, and went through the routine of telling (the same nice lady I see almost every time) my child's name, I found myself looking for some spark of recognition from her. She seems to be one of the few that doesn't recognize me on sight. But then, she hasn't met my children...

They are always in an operating room when I am there.

They are the spark people need to recall that last encounter...they are the reasons to remember. I smile to myself thinking of the impact they have, and how they always have something to say or do that makes people smile.

I follow my usual routine of running to Starbucks down the hall, grabbing (more) coffee and something to eat, and willing it to take at least a few minutes so I am not left with my thoughts, and the less than comfortable chairs, for too long. I wander out in the hall, hoping to see someone I know (which happens far too frequently, considering I am standing in a hospital)...someone who can fill a few more of the minutes I have to wait. I wander for a few minutes, then hurry back to the waiting room, worried I might take too long and miss the doctor. This time, I see the surgeon as he hurries down the hall to join in on the procedure, already in progress in the OR. I know his part won't take long, so I make my way back and sit down.

Sometimes, the plans we make going in are not always how  it pans out.

The plan was to:

1. Put her under to scope her esophagus and stomach to see how our control of reflux was going, and to make sure we didn't see any signs of issues from the iron she takes, or yeast, due to all the antibiotics she is on.

2. To remove the long feeding tube that was placed after her surgery in April, that we had been unable to remove here at home. We tried twice, with the second attempt leading to another abscess.

3. To have our surgeon fully examine the g-tube tract for signs of another fistula, or an explanation for the latest abscess.

And 4. To replace the long g-tube with what she has always had, called a "button" g-tube.

Madi was desperate to get that long tube out and her old one back in. Desperate!! The long one hangs down a ways, doesn't clamp (leading to messes when trying to hook up to her feeding pump), is more obvious, and in general, just isn't what she wants. In this life, she has to put up with enough, so we do all we can to make it as unobtrusive as possible.

How things actually went:

1. We didn't have the anesthesiologist we were told we would have. Not a huge deal, but I have gotten used to not having to explain everything and convince them we should do what we know works. I hadn't prepped for the discussion, and with that, I did not advocate for Madison as well as I should have.

2. While the scope went as planned, there was a new finding. A nodule was found that hasn't been seen before, but we are pretty sure it's something that happens sometimes when you have been on PPI's (reflux meds) for too long. Lord knows she has, and we talked again about the need to do surgery to hopefully stop the reflux and allow us to get off the medication. Biopsies were done, so we will know more next week.

3. The surgeons inspection of the g-tube tract was revealing. While not another fistula, there is a fissure (tear) running from the stomach to about halfway up the tract. Barring us allowing the g-tube tract to close, something we cannot do, the healing process is going to take time. How much is anyone's guess.

4. This fissure means we could not switch her back to her old g-tube type, and another long tube was placed. The button type would have put enough pressure on the stomach side of the tube, it would cause more tearing and there is a real risk of the balloon that holds it in place moving into the tract and causing more damage.

I knew immediately that Madison was going to be upset with this change in plans. It was, after all, the ONLY part that she cared about.  My feeling that she would wake up from anesthesia and immediately pat her stomach to feel the new tube, and be confused when it wasn't there, apparently is exactly as it went.

I had to chuckle at our doctors a little...our GI and surgeon are friends, and according to our GI, they apparently had a bit of a fight over Miss Madison. GI was all ready to place the button g-tube when the surgeon came in and promptly told him no way. GI insisted he was going to do what his patient wanted....surgeon said no....GI insisted...surgeon threatened to walk out...and they were at an impasse. Once the surgeon found the fissure, even GI couldn't disagree that the button would cause more problems, but he wanted me to make sure Madi knew he fought for her, and was bullied by our surgeon....LOL!

As expected, Madi was a mess when I got back to recovery and could explain what happened. I haven't seen her that sad in a long time. And my heart broke. And there was not a thing I could do to make it better.

And then....we talked about camp. Little by little, as we were discharged and made our way home, she smiled a little more, and distracted herself with camp plans. The Dr. Pepper with "good ice" from Sonic helped too.

What happened, in the grand scheme of things, was not a big deal. She has done the long tube for 3 months, and put up with it like a champ, and she can do it again. This was one of those quality of life moments....she needed the things to go back to the way they were... she needed this "win".  She was disappointed, and sad, and faced with a set back she didn't need.

She also proceeded to do what Madi does so amazingly well....she quickly started getting "over it".

My day wasn't done, oh no!!

A drive home, a switch out of children, and I was on my way back with Chance. Wednesday was the day we met with our pain doctor to try and get him some relief and a plan. For reasons we still don't understand, Chance has been in a decline since January, that has included a significant decrease in physical stamina, constant muscle pain, a week long episode in April of severe muscle pain, and, as time has gone on and his body has been stressed, Neuro issues, GI problems, and an increase in fatigue.

After consulting with everyone I can think of, making changes in physical therapy routines, and testing what we could think to test, he & I were finally faced with the need to start treating the symptoms and hoping for some relief.

The appointment went well, and we have a plan that we hope might work. It won't fix whatever the problem is exactly, but at this point, pain relief is a huge need.

Distraction is too. Camp Korey is an awesome distraction, coming exactly when he needs it. Coming exactly when I need it too.

Thursday, my inadequate advocating for Madison came back to bite us on the butt, when she woke with every muscle in her body (even her tongue) in severe pain!! It was a long day, with lots of phone calls and worry, but we finally were able to determine that she was given something she hadn't had before, and that is likely causing this problem. Once we figured that out, pain meds were given, and by evening she was in much better shape.

Days like these, they are hard, but they remind us to hang on even tighter to those things that mean so much to us. We are so very grateful for each and everyone one of them.

We are steadily making our way to this goal....with your help!! We thank you, from the bottom of our hearts, for your support.

I have extended the deadline on the fundraiser to Sunday, and the raffle drawing will take place Monday morning. If you feel led, we are still in desperate need of your help at www.youcaring.com/mccampfund

We fly out tomorrow evening, deliver Chance & Madi to Camp Korey on Sunday, and Abby on Monday for the start of another amazing, life changing week. All thanks to you.

Thank you.

A Raffle: McNair Kid's Camp Fund 2013

We are so grateful for the support we are receiving. Thanks to you all, we are making progress towards our goal of getting back to Camp Korey with the kids.

I am reminded how hard it is to ask for help.....and how incredible our community is when we have to do it.

With that in mind, we want to offer something creative to those that are able to help. 

For every donation of $25 or more made by July 27th, your name will be entered into a raffle for an original piece of art made by Abby, Madison, and/or I. We will work with you to create something just for you!! (Those that have already donated will be entered also)

We will draw two names and announce the winners by Monday, July 29th....the first day of camp!!

Some examples of the work we have done:

All acrylic on canvas

Acrylic on Canvas (paintings)

I Love Big D photo collage (20x20)

McNair Kid's Camp Fund 2013

Dear Friends, Family, & Supporters,

We come to you today to humbly ask for help to make it possible to get the kids to Camp Korey again this year.

Donations can be made at www.youcaring.com/mccampfund or by clicking on the link on the top right of this page.

There are moments in time, and acts of kindness, that touch you at the depths of your soul. They happen rarely, and when they do, they move you, and take your breath away. Thanks to all of you, our family has experienced moments like this several times over, on a grander scale than we could have imagined.

“I’ve seen and met angels wearing the disguise of ordinary people living ordinary lives.”

Tracy Chapman

These moment’s for us started with a plea for help to get the kids to camp each summer; and it has been met with many angels. With each act of kindness, our hearts swelled a little more, and we were (yet again) blown away by the support—from the “village” we have been blessed with for our family. I was again reminded how much one person can make a difference in another person’s life and how a group of individuals can provide a family with a life changing experience.

They may say Disney World is the “happiest place on Earth”, but for one week in the summer, I have no doubt that Camp Korey really is. The smiles on every child, counselor, nurse, and doctor tell me I am right. Each year we wonder how we can possibly top the year before, and somehow it happens. This place…Camp Korey…and the people there, change lives.

With your help, this year we return, perhaps more triumphantly than ever before….This year we reach the goal we set last year to be returning to this special place as a whole family, with Michael; Chance, a year older and a year wiser, returns a seasoned counselor, with hopes and goals for every one of “his kids”; Madison is returning, in the role of LIT (Leadership In Training) for the first time!!; and Abigail will be savoring her final year as a camper.

This year, while impossible to imagine it being possible, we are even more grateful for this blessing in our lives.

Camp Korey’s mission is to “honor the courage, strength, & determination of children and their families who battle life threatening and serious illnesses; and to provide them with a safe, friendly, medically sound environment in which to simply have fun and be kids.”  Camp Korey fulfills this mission in amazing ways!!

For those that may be new to our story, my name is Heather and I have been married to my husband, Michael for almost 25 years (our anniversary will happen while we are in Seattle). We are the proud parents to three amazing young people….Chance (19), Madison (16) & Abigail(15).  I write to you today to share our story and to ask for your help to make summer camp possible for our children again this year.

Camp Korey 2009

Chance, Madison and Abigail have endured a great many challenges since they were very young, due to an inherited metabolic disease called Mitochondrial Disease.  Mitochondria are present in every cell in the body except for red blood cells, and are responsible for the production of energy for the cells to use to function.  When a Mitochondrial Disease is present, not enough energy can be produced and many body systems are affected and progressively fail to provide their function within the body.  Any stress on the body, even something as simple as a cold, can cause devastating affects. It is a life threatening disease with no cure, and minimal treatment options.

Camp Korey 2010

Camp was initially important to make happen because it was a “typical” right of passage for childhood, and one we thought  would never be possible for the kids. Due to all three being unable to control their body temperature correctly, most summer camp locations are too hot for them to be able to participate, and their medical needs make most camps, even those for medical reasons, unable to handle their complex needs.

Thankfully Camp Korey, just outside of Seattle, Washington, exists and they are the first & only camp in the country to have dedicated a week to Mitochondrial Disease kids!! Camp Korey is a medically supervised camp staffed with physicians and nurses, and trained camp counselors for children suffering from serious and life threatening illnesses.  The camp provides a week-long experience of camp programs and activities for children ages 7-15 at no cost to them.

Camp Korey 2011

What camp has become for the kids is so much more than giving them a “typical” experience.  It has changed their lives!!  They come away from camp more confident & independent, but more importantly, they come away in better shape physically, mentally & emotionally, with a renewed spirit of hope and optimism.  It is truly incredible to see them shine, literally, after a week at Camp Korey.

Camp Korey 2012

To quote Camp Korey’s website: “For a few days or more at Camp Korey, children enjoy the novel experience of being defined not by their medical diagnosis, but by their spirit, their creativity, and their own potential.” Thank’s to Camp Korey, our children have the chance to be defined by such wonderful things.  Thanks to our supporters, like you, they have this chance to be so defined!! Its because of you and ALL that you do, that these kids can flourish and be amazing, at Camp Korey, and in their world in general.

While the camp is free to attend, we do have to get ourselves there, cover expenses getting the kids ready to go, and expenses while we are there, and this is where you all come in.  

We need your help to make it happen!!

Fifteen years of very high medical expenses has devastated us financially, so something like this is just out of our reach without help.  This last year has been especially difficult for our family, and all three need something to look forward to, and are so excited about the prospect. All to say, we just have to find a way to make this happen.

We are working hard as a family to raise the money needed, and are incredibly grateful for any contributions you might be able to make.  We have full faith that this is meant to be and are looking forward to making some incredible memories.

Thank you for your thoughtful consideration of our cause.

Sincerely,
Michael & Heather McNair

Proud Parents to Chance, Madison & Abigail

Previous posts about Camp:
McNair Kids Camp Fund 2011
Incredibly Blessed
Happiness is

Camp Korey creates some awesome videos to share their mission. The following three tell a little more about the Camp, and include the kids and I talking about what Camp Korey means to us.

A Day in the Life at Camp Korey (me, Madi & friends)

Leaders In Training (Chance & friends)

How has Camp Korey Helped You Grow? (Madi & friends)

Bullet Points & Random Pictures

Buc-ee's

There is so very much going on over here, which calls for a bullet point post.

And random pictures.

Of course.

Love this girl

*A week in Houston in May to see the kid’s medical team there (some of whom we had not seen in person in more than a year because of our “excitement” here last year) = long appointments, too much information shared, more changes to care than one can imagine (we are STILL working on making some of the changes happen), and precious time with friends.

With our special friend, Cayde (new lungs!!)

*My trip to the Mito Symposium went really well. I have a partially written post I hope to get posted soon. Lots of information, awesome people, and a few days in California is note worthy.

Pool time

Pretty girl

My birthday with the Fam

*We have now tried to remove the MicKey peg tube (feeding tube the surgeon put in after Madison’s surgery) TWICE and cannot get the stupid thing out. This last attempt resulted in…..wait for it……another stinking abscess. Another stinking abscess = Madi will be going under anesthesia next week for an endoscopy so they can remove the tube and explore her g-tube tract looking for another fistula…..on Wednesday….four days before we leave for Seattle/Camp Korey. Nah….I am not stressed about that AT ALL!!

Father Day

Good2Go Tacos...mmmm

*We had some precious friends come up from Houston and stay with us for the 4^th of July weekend…..and had an amazing, awesome, wonderful time.

Fireworks at Fair Park

*My precious grandmother developed some issues and ended up inpatient on the 1^st of July. Two hospitals & a skilled nursing facility later, she is settling in not far from my home, and is recovering like a CHAMP!! It was a stressful, busy couple of weeks while we got her back to better health, but she is improving daily and we are looking forward to having her closer by.

What a black labrador amuses himself with, apparently

*I apologized to Abby for being gone so much lately (time at the hospital with Memaw) and she responded with, “It’s okay mom, the hospital is just what we do in the summer.” Ugh. It was a gut check for me, but she truly meant it as reassuring.

My son was called for Jury Duty today!!!

*Prep for Seattle has been slowly, but surely, happening. The McNair Kid’s Camp Fund post will go up sometime later today!!!

Look at that…..back to busy and “normal”.

Did last summer really happen????????

Off to Learn....& Worry

Just a little.

Year before last, a friend asked me to co-lead a new support group here in Dallas for those with Mitochondrial Disease. I was hesitant, only because my life is so unpredictable and I didn't want to commit to something I could not follow through on. She talked me into it....and if I am honest, I am glad she did.

She has the youth and hope to make this happen.....I have the age and experience to know how tough it is to make one work here.

I have been down this road, a couple of times now.

I have theories why it's a difficult endeavor for this location, but there is no question it's needed. We just need to be clever enough to make it happen and be successful, in whatever form it might take.

Each year, the United Mitochondrial Disease Foundation holds a symposium in different parts of the country. Some of the top doctors and researchers in the field of Mitochondrial medicine convene in one location to share information with the scientific community for 3 days, and then the families for two.

It has only once been in this part of the country, in 2002, and I was there for that one. It's the only one I have attended, but can say, it's a pretty remarkable experience, and an awesome way to learn more about this disease we are living with.

With a new group here, the UMDF offered us a scholarship to be able to attend this year, to have the chance to learn more, to network, and hopefully find some ideas on getting this group going. I could not have done it without them covering my travel costs, and I am incredibly grateful!!

In all honesty, I don't love leaving town without my crew. I worry a little that someone will get sick and I won't be here to manage it. I worry a little that I will miss some moment, or that we could have created some together had they been able to come with me. Needless to say, I worry a little. And I miss them....a lot.

I have two of my three "acting up" some medically right now, and this makes me, well..... apprehensive. However, I am leaving them in awesome hands (thanks Mom, Michael & Stephanie!!), and I just have to have some faith that this is meant to be.

I am slowly warming up to the idea of three days on my own ;-) (but seriously, way more slowly than I think I should be....LOL)

Please say an extra prayer that my family behaves while I am away.....that my brain can stay engaged enough to learn as much as possible....and that I can get there and get back with no complications!! I fly out tomorrow, and get back at noon on Sunday, just in time to celebrate the man I love.

I am officially declaring that I take NO responsibility for what my crazy family may do while I am away!! You have been warned!!!