Wednesday, October 31, 2012

Good Luck and Bad Luck

Is it possible, do you think, to have good and bad luck at the same time?  I think so.  We have been blessed, lucky, fortunate, whatever you want to call it to have been able to have this adventure in New York City with Make A Wish.  It is incredible that we have experience something that would have been impossible for us!  Let's face it, one meal for our family in NYC is equivalent to one week's worth of pay!!!  That's a crazy thought but true.

At the same time, we have been stuck in circumstances that aren't exactly ideal! Who has luck like ours?  The flight here was one missed connection after the other then hurricane Sandy...sheesh, that was scary!  That's all there is to it.  I did not enjoy the drama and worry that comes with a hurricane.  I spent two days trying not to act distracted and it was hard.  I was trying to enjoy the day despite the impending doom but at the same time, trying to gather some food and water to prepare for the worst case scenario, after all, I have never experienced a natural disaster before so I had no idea what to expect.  I could only do what we had been advised to do from Make A Wish.

As we were walking back to the hotel from dinner, I was thinking, we always have these bad things happen to us, but we always end up on top.  Yes, we had to face the hurricane but wow, we were so blessed!!  It could have been so much worse than it was!  I feel like we were so protected.  When you look at the map of this hurricane and map out in your mind the path of destruction, you can see this little pocket where the damage was minimal and it was this little circle around our hotel.

New York City was suppose to receive the eye of the storm.  At the last minute, it took an incredible, 90 degree turn and moved around NYC.  There is a huge amount of flooding and destruction all around our hotel.  Just two blocks away, it's a total blackout!!  We were so blessed to have been kept out of harms way, that's really good luck!

It's so easy to jump to conclusions when seemingly bad things happen but when all the dust settles, it's easy to see how blessed we really are.  It's another realization and lesson that I hope I can remember so when the next little rash of bad luck comes upon us, we will be able to be more relaxed, knowing that good luck is just around the corner.





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Monday, October 29, 2012

Our first hurricane

Hurricane Sandy is in full force.  I can't say that I am happy or excited and surviving a hurricane is, incidently, not on my bucket list!

I have been trying to collect water and extra food to keep in our hotel room.  Aside from a couple of tiny markets, everything is closed.  I finally found a loaf of bread today at the Plaza Hotel a couple of miles from our hotel and it cost me $15!!!  They put it in a paper bag so I held it under my coat hoping I could get it back to our hotel without it turning all soggy and gross.  On our way back from the bread excursion, we found a Sbarro pizza restaurant still open so we stopped there for lunch.  I didn't realize that rain had poured through my coat and made the bag all soggy, one of the loaves fell out on the floor!  I picked it up, it was wrapped in a wax paper kind of thing so I think it will be okay, besides, homeless people eat worse than that.

Today has been kind of frustrating.  I have two boys who want to be out experiencing a hurricane and a girl who is having one panic attack after another.  I am trying to be flexible but safe.  I want to 'make the best of things' but still be sensible.  They want to be like the crazy tourists who ignore all warnings of safety.

We made it back to our hotel about 2pm.  The kids laid down to rest and they all fell asleep.  It's been over 2 hours!  They are tired and worn out.  Sam is still trying to get over a bad cold he had before we left.  On our way back from getting the bread, we asked a couple of the cafe's we found open, which were few to see if they would be open tonight.  We found only one that will be.  It is just a few blocks from our hotel.  I suppose we will walk there later and try to save our collection of food and crusts of bread in case we lose power later.  It's a pretty sad looking cache of supplies but I've done the best I can to get some things together.

After the kids wake up, I will post pictures of what is going on around here.

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Sunday, October 28, 2012

We interrupt this hurricane...

To continue with Spencer's Wish.  We spent some time at the Empire State building and yesterday, my brother in law was able to get us free tickets to skate at Rockefeller Center.  What a blast!  We didn't skate for long because we are wimps but it was fun!  We shopped on 5th Ave. a bit, saw the huge Lego store and headed to Central Park Zoo.  It is a tiny zoo but you could really get up close and personal with the animals.  Today, we saw Lady Liberty and Ellis Island, made it to the 911 Memorial and walked up Wall Street and saw the Bull.  We also ate a McDonalds on Broadway that had a concert pianist playing music on a black grand piano!  Pretty cool

Shelbie has been struggling with all the walking we are doing.  Her tethered nerves in her legs have been causing a ton of trouble!  She has been in tears every day we have been here but she keeps on going and hangs in there; a real trooper.  Spencer has had a few bouts of feeling pretty sick after eating but he too, just keeps on going.  Only once, at the zoo, did he have to find a bathroom in a hurry. Sam has been doing well.

Last night, Shelbie was beyond tired and we had 1.5 hours to wait for a table at Hard Rock Cafe in Times Square.  I decided to sit on the floor in the lobby of the restaurant with Shelbie (the floor because the place was packed with people waiting and there were no seats so we joined the masses on the floor)  While we kept our place in line, the boys and my brother in law went out to check out Times Square.

Microsoft was just outside the restaurant with a huge set up to promote their new Microsoft 8 and their tablets.  They had taken over the huge billboard there on the Square.  The boys were playing on the tablets and chatting with one of the female employees.  Long story short, they talked her into putting their picture up on the huge billboard in Times Square for all the world to see.  Not only that, they talked her into some really nice Microsoft coats!  After dinner, we went and picked them up.  As the boys left, the girl said to Spencer, "I hope you get to live a long time."  It was sort of awkward, but sweet at the same time.

Okay, on to some pictures.
A view from the 86th floor of the Empire State Building

Spencer and I on the observation deck.

Skating at Rockefeller- what a blast!

This dragon and the picture below are made entirely out of Lego!  I was impressed with how that dragon head just hung out there so far without falling apart. 


The Love sign on 5th Avenue

Central Park

Statue of Liberty

Who's that in our picture?  My brother in law Howard! He has been a lot of fun to hang out with. 

Sam and the Bull

New York Stock Exchange

911 Memorial

The survivor tree at the Memorial.  This was the only tree that survived the attacks on 9/11. They nursed it's burnt branches back to life.  In 2010, it was uprooted in a severe storm and again, it was brought back to life. 

Well, Spencer's wish is over now.  Just three days because of the Hurricane but we crammed a lot into those three days; a ton in fact!! Spencer enjoyed every minute of it and loves New York.  I really like New York too!  The people here are so friendly, seriously so friendly and kind.  Tonight at almost midnight, I had to get to a pharmacy.   The wind is howling here now and even though it feels like rain, it is just mist from the water miles away blowing into Mid Manhattan.  Spencer came with me and we walked a few blocks to find the pharmacy but I didn't even feel scared or nervous to be out so late.  There are times I feel more threatened at home going to Walgreens at 10 by myself!  I have been pleasantly surprised by this town.  I would definitely come back.

Well, back to the regularly scheduled Hurricane!
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Friday, October 26, 2012

New York Wish!

We had another flying adventure but after a few missed flights, a near miss just for me and a near nervous breakdown, we made it.  Before we get into the fun, I have to tell you about the most tragic part of the trip.  We finally made it to Chicago after a series of delays.  We rushed to try and make it as standby on two separate flights even though we had been re-booked for a later flight.  The clerks were super nice but it just didn't work out.  We sat around waiting for our flight and an ambulance and firetruck came screaming up to our gate.  They carried a young woman out and put her in a wheelchair.  She was traveling alone and pretty upset.  Paramedics left but they left her sitting alone and she just wasn't calming down.  I decided to go and sit with her and try to comfort her.

She was really sweet and had had a panic attack on the plane.  Her fingers were stiffened and curled all up and she couldn't feel her arms and hands.  It was a pretty bad anxiety attack I guess.  I just tried to talk to her about other things to get her mind off the trauma.  She was waiting for a wheelchair to take her to the baggage claim.  In my visiting, I didn't hear that they had changed our gate number.  Once she left, the kids came running to tell me so we ended up sprinting to our new gate and arrived just in time for boarding.

One big problem...the kids were rushing on to the plane and didn't notice that my ticket didn't go through, they had no record of me on the flight!  She wouldn't let me get my kids and sent me off to the United desk.  With all the stand by efforts, they missed getting me booked with my kids and accidently booked me for a flight that had left an hour earlier.  The clerk said there were no more seats!  As he is on hold with someone, he is calling all these stand by people and giving them tickets!!  I said to him, "Why are you not giving me a stand by ticket?  My kids are already in their seats!?"  He gave another ticket away and said, "That was the last seat, Sorry."
"Are you kidding me?  How could this happen?"  I was about to burst into tears and he said, "Oh, wait, I think one passenger has been double booked."  By now, they had made the last call and the gate was empty!  Long story short, I made it on at the very last minute.  The kids were all sitting apart from each other and a little frightened.

Anyways, we landed in New York just fine, found our hotel and headed straight down to Times Square!  It was 11pm!  We walked and walked and walked.  It was so fun and the weather was warm!

Today, we spent most of the day at the Museum of Modern  Art!  It was the best experience!  The kids loved it!!  The highlight of the day for me was see Starry Night by Vincent Van Gogh!  He is my favorite artist.  I love art!  Spencer said, "I can't believe I am seeing some of the greatest artists of all time in one place!! I am amazed!"  He really loved the Jackson Pollack, Claude Monet and Picasso.

Tonight we got to see Wicked on Broadway at the Gershwin Theater.  It was even better than I had imagined it to be and funny!  We walked about 5 or 6 miles today so the kids are pooped out but what an awesome experience.  Oh, did I mention shopping on 5th Avenue?  We went to the glass Apple store, FAO Shwartz, Armani, and some other fun stores as well as St. Patrick Cathedral.  What a fantastic place.

Enough babbling, here are some pics from today.
Times Square at midnight

The Roxy Deli...I almost died at the prices not to mention the size.  Check out this sandwich!!!  $25.00!!

St. Patrick's Cathedral was so beautiful.

Tons of cool things to look at. 

Love this quote at the MOMA (Museum of Modern Art)

My brother in law Howard, Shelbie, Spencer and Sam

I thought these canvases of fine art needed some additional subject matter! 

The Donald

The set of Wicked.  We were 14 rows from the stage.  We have been so spoiled!


After Wicked, we went to the famous Carnegie's for some Cheesecake.  Nothing is small in New York!

We have had some interesting dining experiences.  For dinner, we went to an Italian Restaurant called Nino's.  We had no idea what we were getting into but it was superb food.  My brother in law ordered a Caesar Salad and they rolled out this tray filled with little bowls of capers, anchovies, garlic, olive oil, egg, croutons and lettuce.  They made the dressing right there in front of us.  The prices were pretty decent, considering how expensive things are.  The entrees were 20 bucks.  We didn't order any extra's but when we got the bill it was $165.00!!  Turns out they charge for every single refill!  We had no clue and they just kept bringing fresh soda's.  The final bill with tip was nearly $200!!  OMG, I have never paid for an expensive meal like that before.  We were all a little shocked.  But the real shock came when they declined my debit card!  Luckily, I had a credit card I could use.  It's been quite the eye opening adventure.

Spencer is having the time of his life!  So grateful to Make A Wish.
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Tuesday, October 23, 2012

Reality Sets In

I was not expecting today to be such a hard and difficult day but it has been.  I should probably be going to bed but I know I have a few more hours still to process the sadness from today.  I know I shouldn't be sad, I have all sorts of reasons to be happy I mean, seriously, it's not everyday you get an all expense paid trip for your whole family to New York City!

This week, we have lost two very special children to mitochondrial disease and one Shwachman Diamond girl has been given just a few weeks to live.  Little Jasmine received a bone marrow transplant a couple of years ago and she has been fighting rejection for a long, long time.  Her brother passed away just before she received her transplant; he too had SDS.  One of the mito kids who died was a young girl, just 24 years old. I don't think I need to elaborate on how much that hit home.

Today, Shelbie had a tough day at the hospital.  It was so hard and strange, it seemed surreal.  While all the craziness was happening there, Spencer was home sick again!  That poor kid has been home more than he has been in school.  I had a big surprise party planned for him to give him the itinerary for New York and his wish granters came to present him with his back pack.  The restaurant I had reserved double booked, but with Spencer sick, we had to scale back and keep it quiet.  It turned out okay, three friends came, the wish granters Lori and Jo Ann, two of my favorite people I might add, and his friends invited his favorite teacher Mr. Bair and his wife.  Spencer faked being healthy very well.  Most kids fake being sick, mine fake being healthy.

We got home and went through the details of the trip and then it all fell apart.  I don't even think I can find words to describe the heartbreaking sadness I saw from Spencer.  He is completely overwhelmed and exhausted on all counts!  He is so far behind in school, he has a solid list of 'F's.  I try to help him get caught up but it seems like after all the other necessary things are done, like trying to keep my jobs and find new ones and take care of sickness every other day, school gets left behind.  He basically said he was going to drop out and there was no point to trying to get all his work caught up.

We kind of argued back and forth, okay, we argued back and forth.  I was probably a little hard on him.  We said prayers and sent them all to bed.  He came and apologized and I apologized too.  Nothing good comes from a debate about school work at 11pm when one person is sick and the other is tired.

The thing about Spencer is that he is just like me.  Sad but true.  It will be a rare moment when he actually speaks what's on his mind and be truthful about it.  We are so good at being FINE even when we aren't.  I hugged him and said, "Spencer, you can do this, you can get caught up, we will work on it together."
"Mom," he said with tears welling up in his eyes, "I'm just not getting better, I'm never going to be better."
Again, I was speechless.  I hugged him and cried.  It's just so sad.  These are the hard days, the moments when we can't pretend things are fine anymore.

I don't want to sound ungrateful or to be misunderstood but getting a wish from Make A Wish, though it's wonderful and exciting to get a dream come true, it's sad to think your children meet all the requirements for a child to get a wish.  It's not me who asks for a wish for them, it has to be a doctor who applies on their behalf because their life is threatened by disease.  I live so much in denial that they are going to get better, or that they really aren't as sick as other kids but then days like today, I realize that our life includes qualifying for Wishes.

I have put every ounce of energy into creating this happy life, I have taught them to laugh in the face of fear, I have taught them get up and get out, to help someone else even when they feel defeated themselves and despite the sickness we have fun but then, when I stand there dumbfounded with nothing witty or funny to say or exciting plans to take the sting out of some bad news, I hate it.  I hate that I can't change the course of their life.  I hate that they have to feel sadness and fear. I hate these moments, I don't want to be in this space of helplessness as a mom, when all I can offer is a shared tear and shoulder to cry on.  Most of all, I hate to see other mothers, say goodbye to their children.

Humbly and gratefully, we will try to get ready for New York.  I will pray that everyone will be somewhat stable to travel and that we can deal with the little setbacks of nausea and dizziness and fatigue as they will surely come while we are gone.   My little surprise party for Spencer ended up being small but just right.  I will post pictures of that tomorrow.  I am really glad that my brother in law is taking time off work and paying for a large portion of his plane ticket to meet us in New York so I won't be alone with the kids.  That is comforting to know he will be there to help me get us where we need to be and if something should go wrong, I know he will protect us and if we need the Priesthood, he's there.  I am grateful to my sister for being willing to loan him to us for a week.

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Sunday, October 21, 2012

Sneak Peek!

I went from no cake for Spencer's celebration Monday night to a store bought cake to this...

A New York Wish!  I sculpted a few things to represent some of the activities we will be doing.   The Statue of Liberty, Central Park Zoo, Metropolitan Museum of Art, Jimmy Fallon,  WICKED just to name a few things.  
Shelbie painted this little picture of Edward Munch's Scream!  It's a riot.  She did a great job!

Notice the witches feet for the Broadway Play Wicked and a little checkered taxi.

We will be going to a live taping of Jimmy Fallon.  He does a really funny skit where he writes letters to things like, "Dear Paperclip...thank you for being a staple for people who can't commit."  He's funny!

Of course, the Statue of Liberty

The Giraffe represents the Central Park Zoo!


I am excited to surprise Spencer.  Tomorrow while I sit with Shelbie, I will finish the banner, pom poms and few other little things.
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Saturday, October 20, 2012

Big News!!

Spencer has been granted a wish from Make A Wish!  I think I actually mentioned this already but now I'm making it official.  His wish is to go to New York to see a live taping of Saturday Night Live.  Unfortunately, that part won't be happening since SNL is one of the most popular shows and they were unable to secure tickets but, they are sending him to Jimmy Fallon instead.  He's pretty funny too and I know Spencer will love it just as well.

This post kicks off our journey with Make A Wish!  I will try to post pictures and updates daily.  I have a feeling we won't be sleeping this whole trip.  It will pretty much be like a gambler in Vegas.

On Monday, we will be getting his backpack from Make A Wish filled with our itinerary and tickets.  I have reserved a large room at a local pizza restaurant where we will surprise Spencer with the final plans.  I am so excited for him.  I was going to make a special cake and stuff but Shelbie will be in the hospital on Monday getting her transfusion so I won't have time to make it. Store bought will work I guess. I have made a fun banner and his dad has collected posters and flyers of all the places Make A Wish has planned to send us for the 6 days we are there.  Spencer's wish granters will be there and a couple of his closest friends, dad and step family.  It will be a fun time and a great way to kick things off.

Wednesday, we make a 4 hour drive to the airport and fly out bright and early on Thursday.  I asked Spencer if he wanted to know the itinerary before we got there and he said, "Nope.  I don't really care.  I just want to be surprised every minute of every day!  I am just so excited to be in New York."

I am praying everyone is feeling well enough to enjoy this trip.  Spencer will be in the hospital the week after we get home so this is a nice way to distract from that.  I am so grateful to Make A Wish!

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Friday, October 19, 2012

Hope

If you ever find yourself with a little free time to sit and day dream, think about hope.  It's just another word, so easy to toss out there.  I hope it doesn't rain,  I hope I get the promotion, I hope the kids take a nap

We probably say that word a dozen times a day or more!

Lately, I've been taking care of a lady who was diagnosed with congestive heart failure 6 months ago.  The doctor said she could plan on 6-12 months of life left.  I wish doctors wouldn't say that, it just sucks the hope out of everything, not to mention life!  She isn't the first dying person I have taken care of and with each one, there seems to be this amazing outlook of hope they adopt.  Not the trivial kind of hope we think nothing of, but a real hope that things are going to get better.

This week, my friend has really struggled with her disease.  She fell on Monday in the early morning hours and it took her from 4 in the morning until 9 am to squirm her way over to the phone which was only 3-4 feet away. Each of her legs weighs over 25 lbs.  The skin is stretched so tight that blood and lymphatic fluid just continually leaks and runs down her legs.  It's sad to see but is she happy.  She is happy and making jokes all the day long.  Besides that, she has hope.

Her favorite thing to do is take long drives and go to fast food restaurants.  If you ask me, her driving days are over given the fact that she can barely lift up her legs to move.  Still, she is hopeful that she will drive soon and even walk.  So much hope.  It's the hope that convinces her that she will 'beat' this disease and by next year she will be off traveling to her favorite places.

At first, I wanted to ask her if she really believed that but then I thought about my own life.  It's hope that gets us through the hard times.  I'm not sure what I would do if I didn't have hope.  Sometimes, it closely resembles denial, which I am the queen of but really, it's hope.

Hope is something I think you could study and learn and even live and still never really get to the depths of it.  I really hope my friend never loses hope that tomorrow will be better than today.
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Saturday, October 13, 2012

Google saved my life!

If I live to be 100 years old, which is pushing it for me...I figure I have about another good 10 years left, anyways, if I did live to be 100, I will never understand how the medical community works.  I am, however, beginning to understand though, why they call a doctor's office a 'practice' because they really have no idea what they are doing.  I have also decided that people are living longer these days because of Google and they figure out their health problems on their own, then go tell the doctor what they need.  The doctor then looks it up on Google and confirms that yes, you are dying of Cancer...(Well, doesn't everything indicate a possible carcinoma?)

Okay, I may be a little harsh in my assessment of doctors but there is some truth to it or maybe the truth is, we/I have idolized doctors to be something bigger and better than they really are.  I still don't understand why I always have to come up with the solutions to problems my kids have.  It's so annoying!

Last night, a friend invited me to a presentation on Hemophilia.  I went but only because she had invited me.  There were several pharmaceutical companies there with booths set up and some guest speakers.  During one of the talks, they talked about bleeding around the joints.  They said it feels like a bubbling, tingling sensation.  I immediately paid closer attention because Shelbie has often complained about this sensation and almost always when her platelets are low.  She has mentioned it to many doctors in several different specialties and they all shrug it off.  The other strange happening for Shelbie is that for the past 3-4 months, she can hardly walk without pain.  In fact, yesterday I broke down and bought her a knee brace to help her get around easier.

So, back to this meeting.  They went on to say that most Hemophilia patients end up with debilitating joint pain and disfigurement because of the joint bleeding.  Once the bleed stops, iron is left behind and begins irritating the joint and wearing it away.  Over time, you end up with inflammation and pain from the old bleed.     Sound familiar?!!!  Ya, this sounds exactly like the cycle Shelbie is in.  After the presentations I talked to a couple of the reps and discussed Immune Thrombocytopenia Purpura and if low platelets would cause similar symptoms that Hemophilia patients experience.  Sure enough, they confirmed that this is a common problem in ITP patients too!!

I'm so frustrated!  Why doesn't the ITP community ever talk about this problem?  Why hasn't our doctor been aware of this problem and looked further into helping her?  Even Hematologists just look at us and brush the complaint aside.  Shelbie has had ITP since she was three years old!  That's a lot of opportunity for joints to bleed.  Once again, I feel like we are a day late and a dollar short.   Think of all the pain we could have prevented if we had only known about this condition sooner.

I just don't get it.  This seems like something your average doctor should be aware of.  Arghhhh.  Sometimes, it's the little things that become so frustrating.

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Thursday, October 11, 2012

Being an awful friend

Shwachman Diamond Syndrome is rare, really rare.  What's even more remarkable is that there is the sweetest family that lives just 30 miles from me and their little girl has Shwachman Diamond Syndrome.

We  met them within the first couple of years of their daughter getting the diagnosis, that was 5 years ago.  We did a really good job of staying in touch, meeting for lunch dates, swimming parties with the kids and Monday night bbq's and fun.

I don't really know what happened but all of a sudden, 2 years has passed and we have only talked to each other on the phone twice and haven't gotten together.  She now has a sweet little 18 month old boy who has Hemophilia.  Can you imagine how hard that must be to have three kids, one healthy, and two with completely different genetic diseases?  She has a lot on her plate!

Tonight, her oldest, healthy daughter was playing soccer at a field literally around the corner from our house. We walked down to watch the game and catch up.  I felt awful as we visited that I haven't done more to support her and help her.

She is still really scared about what the future holds for her sweet little girl.  She has no real support when it comes to acquiring knowledge about SDS and so it has become just a bunch of unknowns that are freaking her out.  I should have been there more for her.  I should be helping her navigate the doctors and helping her find answers to some of the things she worries about.  I really feel like the worst friend ever!

She's not ready for a support group and definitely not ready to hear about all the things that can go wrong but she does need some validation that things are going to be okay.  I'm glad my kids were able to come with me and she could ask them all sorts of questions about what the different pains feel like, what they do to cope, how they are accepted by friends, if they are scared of getting sick or dying...My kids were really open and honest and I think that helped.

Listening to my kids made me stand in awe of them!  We don't seem that out of the ordinary to me at least, but tonight felt almost surreal, as if I was listening to strangers.  For a moment, I forgot they were my kids and I was feeling shock and sadness as I heard them describe the difficulties of their life with SDS.  Then I realized that these were my kids!!!  My strong, humble, amazing kids who were sitting here helping a mother who is so sad and scared!  It was amazing but a little sad too.  I am glad all over again that we can use SDS and our experience with chronic illness to help someone, to make their world a little more peaceful even for one night.

I need to do better at being a good friend.  I really have been caught up and bogged down in my own little world of hurt but she has really needed someone, someone who could understand just how crazy SDS is.

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Friday, October 5, 2012

Hear the sad story

I recently heard someone say, "It's much easier to hear the sad story than it is to be the sad story."  She lost a child some time ago and she is the sad story.  It was a sad story for sure.

Call me crazy but, I would rather me or my children be the sad story than for me to have to hear the sad story of someone else.  Hearing sad stories makes me feel crazy.  I can't stand it.  I'm not sure why.  Maybe, it's because I know I can handle anything and I worry that other people won't be able to handle the bad things that happen and they will fall apart.  I hate seeing people sad, scared and falling apart.

Sometimes, the hardest thing about being in the Shwachman Diamond Support group is witnessing the new parents joining because their child was just diagnosed or is in the process of being diagnosed.  Some of them are terrified and have little support in place.  My stomach drops.  I remember so clearly the day my kids were diagnosed.  There are scarcely words to describe that fear, the way time races and all you can think about is how long you have left with these priceless children.

Some people think our story is sad.  Maybe it is, I never really give it much thought.  It's not really sad to me, at least not all the time.  There are moments when I look at my kids and ache at all the hard things they have to face but for the most part, we are happy.  We never let a day go by that we haven't tried to pack the best parts of life into it!

The sad story to me is the one who takes the important things in life for granted; who worry more about money, houses, cars, toys and vacation destinations.  I'm sad for the people who can't see the value and importance in even the most ordinary moment. There is no such thing as an ordinary day in our family; not just because there is always something crazy going on but because we celebrate life everyday, we make the moments meaningful!   Even a sad, sad Shwachman Diamond story can be empowering and moving, even joyful cause sometimes it is!  Some of our favorite traditions were born out of sad stories and suffering.  I wouldn't trade that for anything!

I remember 10 years ago this coming week, Spencer had begun having a series of seizures.  He was in the hospital in a medically induced coma I guess you could say.  They would try to taper him off the heavy meds and he did okay for a day or two but then would begin seizing again.  During that week before his diagnosis of Encephalitis, I tried to plan special things for Shelbie and Samuel when I took breaks from the hospital.  Spencer eventually had to be life-flighted to Boise.  I had to be gone from Shelbie and Samuel for two weeks straight.  When Spencer returned from Boise, he spent another week in our local hospital as we tried to rebuild his strength and get him walking again.

One night, I dressed the other two kids up in their Halloween costumes and I filled their treat bags up with candy; it was a few days before Halloween.  We then went door to door in the neighborhood and yelled on the front steps, "We're tricking you with treats!"  When they opened the door, we filled their hands with candy!!  It was so much fun!.  When we covered the neighborhood, we headed up to the hospital where we visited each room to give them some candy.  We finished up with Spencer and watched a movie together and ate pizza.  That is one of my fondest memories even though it was the most tragic too.  We almost lost Spencer that month.    We were also the recipients of such kind thoughts.

I remember one night during that same event, the man that lived across the street came up several nights and tried to coax Spencer into eating.  He lost so much weight and the doctors were worried.  Every time I tried to get him to eat, he would throw a tantrum.  This man was huge in stature but so sweet to see him playing food games with Spencer and making him laugh.  It worked and Spencer did get his appetite back but it took this man coming every single day to help with Spencer.  What an unexpected source of comfort, what a blessing.

So, sad story or not.  I am grateful for all the great stories of love we have accumulated over this Shwachman Diamond Syndrome journey!

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Wednesday, October 3, 2012

Sleeping, breathing, eating and more

Spencer wins the award for the most specialists seen in one day!  The first week in November, he will be going through a battery of tests starting with the Sleep specialists, then the Pulmonologist.  After a couple of hours there, we will be moving onto the Neurologist, the Ear Nose Throat doc and finally wrap it up with the Gastroenterologist.  He will be admitted for some testing but we aren't exactly sure yet what that will be.  

I am really grateful to Dr. Thompson, our Gastroenterologist for co-ordinating all this and getting things submitted and approved by the insurance company.  Our Oncologist is also getting on board so we can keep everyone in the loop.  It may seem like overkill but this is the stuff that dreams are made of.  My dreams at least, maybe a lot of Shwachman Diamond Syndrome mom's dreams.  To have that many people looking at my child over the course of 2-3 days and then meeting together to discuss a plan of attack is just incredible.  I'm worried it won't actually happen.

Here's the funny thing about the Neurologist.  The new guy we will be seeing use to practice just 30 minutes from our house.  Because of politics at the hospital he was working in, he left and moved to Boise so now we will see him there. I have been told he has great credentials and a superior education but the Rate My Doctor scores are low, lower than I would like to see.  I am keeping an open mind.  If we like him, he will be our back up Neurologist when we can't get to Seattle.

They wanted Spencer to get started on the 31st of October but that is Halloween and the day we return from Spencer's wish so that is out of the question.  Some big news is coming about his Wish.  It's really exciting, almost surreal.

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