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Showing posts from October, 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, af…

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…

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 …

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 gu…

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 happ…

Sneak Peek!

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

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

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 ge…


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 wa…

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 an…

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…

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 word…

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 w…