Monday, January 3, 2011

Happy New Year!!!

I'm sure I'm not the only one happy to have 2010 gone.  I read so many different people's blogs that, while our year was truly ridiculous, I know that many, many people have had an even more difficult time.  My heart goes out to those people.  Crazy though my life may be, at least no one in my life has a terminal disease.  For that I am extremely grateful, and blessed.  And then there are the blessings that come when you are down and have been kicked  a few times.  They are generally so unexpected, so surprising and at just the right time that you just want to melt.

January started innocently enough with nothing indicating total insanity that I can recall.  Actually, I don't remember the year being too bad until April. We were finally able to buy a new TV for February.  That was good.  March... March changed my life for the better.  It was March that I met Tony W, Courtney A & Pam.
 This opened up a whole new chapter of being able to help others, meet other families going through the same things, connect, and make new friends.  This was like my light at the end of the tunnel.  Suddenly, there were people that understood, that had great advice & compassion, people I could learn from and teach!  And it made me realize that my dream of helping newly diagnosed families wasn't out of reach.  All that I had needed was a forum and, well..... there it was.

Then April.  During spring break is when suddenly Emily was unable to walk for about a week.  All seemed ok after;  we figured it was a typical flare and it would go away.  This was also around the time that my illusions that she would stay on Enbrel forever and ever and life would be easy for her kind of crashed.  Kind of in the way that pregnant mothers-to-be say "Oh, my child will never cry", my thinking was "No, my child will never flare."  Oh, to be so naive again!  Of course, back in April I thought she had "just" arthritis, Raynaud's & Scleroderma.  (Like that wasn't bad enough all on its own!)  She never fully recovered from this "flare", but she was mostly walking.  Her endurance went down more & more.

May kept the downward spiral trend going.  That is when Kevin lost his job.  Scary blessing, really.  I had prayed for it, actually.  He hated his job.  He was miserable.  It needed to happen.  Not the best economy for it, but ok.  June was Cub Scout camp.  That was fun, yet challenging.  June also brought news that Kevin's thyroid doctor was worried about potentially dangerous cells.  As a precaution, she wanted Kevin to stop taking the one medicine that controlled all of the hormones in his body for a month and go in for a bone scan.  He felt like a slug for the next almost 2 months.

July was the JA Conference!!!  This was a dream come true for me.  I cannot tell you how much time I have poured in to researching her different conditions, all arthritis-related.  I am sure that it is days by this point.  To say that I was excited could be the understatement of the year.  That was an awesome adventure for Emily & I!  She missed her Boy too much to truly enjoy herself, and she was having a rough time, but it was still fun!  It was great connecting with other parents that understood things.

August brought the new school year.  That started off very well, until September.  By September I knew that we had to make some medication changes fast.  If we hadn't changed her meds then we would never have seen it.  By the end of September Emily could barely walk.  She started missing school, something that she really doesn't like to do.  October brought her doctor totally blowing us off, changing doctors to one much further away from home, but much more caring!  October brought the Juvenile Dermatomyositis (JDM) diagnosis and a 6 day hospital stay for Emily.  She was kept for an MRI, which showed muscle damage, an Upper GI, a Pulminary Function test, plenty of labs, and daily SoluMedrol IV's.  (500MG IV Steroids)  She had her first IVIg infusion, her first Remicade infusion, and she really went down hill.  She actually got worse for about a month.  She also gained 20 lbs in a month from the high steroid dosage she was sent home with, called Cushing's Syndrome. 

November brought the thyroid doctor saying, basically, "Hey!  I know I should have called you back like 2 months ago, but I think it would be a great idea for you to be confined for 3-5 days and given high-dose radiation... just in case" to me during my appointment, but about Kevin.  We devoted 80% of my appointment to planning out his treatments.  November also brought Emily going back to school (she missed almost every day in October), and feeling a little better.  Her teacher, God love her, bought Emily some shirts.  How many teachers would do that???  I was sooooo touched!  It also brought to her depression because of the Cushing's.  Trying to find ways to make her happy became a hobby for us.  We were also given a concrete diagnosis of Mixed Connective Tissue Disease, along with a prescription for a wheelchair, which our physical therapist handled for us.  (We won't see her new chair until probably February, though.)  Yes, she can walk, however she tires very quickly.  She'll push herself to keep going at school, but if we're going out she just can't walk that much.  She still has days where it's hard walk.

And then beautiful December.  December started off a bit rough because she was still so unhappy that she couldn't even come up with a Christmas list until about a week before Christmas.  By this point my family was so happy to just simply be together that no one really wanted much.  This was the first Christmas that we had absolutely no idea what to buy for anyone.  Her physical therapist at school made her a little care package for her birthday of some new clothes and fuzzy socks!  She sooooooo loves those fuzzy socks :)  Towards the end of December Em started to feel a little happier.  What a blessing!  She received a little Christmas care package from her physical therapist outside of school.  Apparently, they are allowed to elect a patient or 2 that they think has earned  it.  Her PT elected her.  Again, we were so touched.  It really makes me weepy to see how many people will try to cheer up a sad, aching little girl, just because they can.  This is why people need people.  These people have touched her life in ways that we simply couldn't.  And then came the BIG blessings, the ones that we simply couldn't believe.  First, adding a med for her Raynaud's & decreasing her Prednisone helped give Emily some happiness!  Our Secret Santa(s) that went way overboard when they didn't even have to.  On one of the worst days, when we had driven the 2.5 hours to the hospital for her infusion only to not be able to find a vein, after poking her so many times with her crying and so upset, knowing I had bronchitis but no time to be sick... that's when they came.  On the day that I really just felt like breaking down from stress and exhaustion- that's when they came.  It wasn't about food, toys, cards, etc.  It was that someone was so touched by what we were going through that they felt compelled to help.  That's what Christmas is about, & I've always known that, but I never expected to be on this end of it.  It couldn't have come at a better time.  Needless to say, Christmas was wonderful, we had a lovely time enjoying the company of our family and friends, & I got the one thing that I wanted the most.  Quite simply, I just wanted to hear my girl laugh.  REALLY laugh, like hysterically.  With her brother.  Listening to them bicker like an old married couple, like they did before Prednisone.  For once I didn't cook on Christmas.  We didn't leave the house.  It was perfect.

To leave the year behind, we went shoe shopping for the kids on New Year's Eve.  Not only did they drive me crazy, but I realized exactly what a mess I have become.  So, we're at the mall in the Disney Store.  Of course, all of my kids are as excited as they would be if we were actually at Disney.  I look up and see a sign saying "Happiest place on Earth".  I'm sure that for many people it is, but I just cried.  Yeah, I know.  Crazy, eh?  But I thought of how I just want them all to be happy, and then I thought of how happy they would all be at Disney, of Em at Disney, and how there's just no way we could do that right now.  I don't usually get upset about what we can't do, but since my whole goal in life anymore is to make my sweet little bean happy... that just did it for me.  I cried on and off almost the whole time we were in the store.  At least 20-30 minutes.   So, I am starting the new year off by finding something every day to find joy in.  To look back on every day and think of the good things, forget about the bad.  I want to count my blessings even more. 

There's someone that I love whose daughter recently blessed him with a grandchild that is now 2 months old.  The baby's father shook the baby while Mom was away.  The baby is paralyzed now on her right side, as well as brain damaged.  This makes me so sad, so angry, so heartbroken for them all.  The dad has been arrested, but my friend's family is just dying for this child.  Mom is a wreck, as is Grandpa.  He doesn't want anyone to know so I won't name him, but this little baby needs prayers.  This happened just before Christmas.  This baby never had a chance.  We all knew that Dad was a jerk, but we didn't think he was capable of something that horrendous.  Please pray for this little one.  That's one heck of a horrible way to end a year for them.  And that alone makes our year look like a piece of cake, doesn't it?  You just never know what tomorrow may bring.

1 comment:

  1. Aw I am SO happy to hear that Emily is finally feeling better!!! That is quite a year you had. Let's hope 2011 is quiet :)