Thursday, April 3, 2014


I seldomly find myself alone.  So when I was alone in my car making the 1.5 mile drive to my doctors office for a bladder infection, I blared the radio and sang along to one of my "river songs".  That's when it hit me.  The tears flowed effortlessly down my face as I realized how much I missed my life.  I want it back and I want it back now.  I want boat rides and I want to be able to handle heat above 70.  I want long walks and dinners out with friends.  I want to laugh without causing pain.  I want unplanned adventures and spur of the moment trips.  I want to dance... no that's not true.  I've never liked to dance.  I want to play catch with my kids, I want to swim with them and chase them around.  I want to smile because I feel good, not because I'm hiding pain.  I have been so busy surviving each day, being grateful for the life that I do have that I didn't even realize what I have lost.  I couldn't stop crying as I was thinking of the great memories we made on our summer vacations.  Vacations... a word of the past.  A word that makes my body cringe thinking  about it because I'm not sure if I can muster up enough energy to take one.  Vacation, a word that my family craves.  Dream vacations are what we discuss at the breakfast table.  Everyone saying where they want to go and what they want to do.  Once breakfast is over, we sigh and start our day, wishing and hoping for one day to take these vacations.

We are adjusting.  Adjusting to the new changes we have right now while waiting for the old life to return.  I have been on TPN now for 6 weeks.  That's 4 weeks longer than I expected.  (Apparently I was the only one who thought I would only be on it for 2 weeks)  I have gained all my weight back plus some which I'm not sure is supposed to happen.  I am not experiencing the pain, headaches and everything else that came with not eating or drinking enough.  The TPN has saved my life, even though having the PICC line is scary with all the possible complications such as infection, stroke, heart attack, blood clot which I've already had in one line.  I can't lift more than 10 pounds with my right arm.  I can't get my right arm wet which makes showering a little tricky.  Even through all the negatives the PICC line comes with, the positives certainly outweigh them.  I am alive and learning to deal with this new challenge.   I see the GI specialist on Friday.  It's the first appointment with him so I know I won't receive answers but I'm hoping we can move along quickly with whatever it is he will want to do.  You know how there are 5 stages of grieving?  I've decided to jump between denial and acceptance.  Mostly staying in denial.  I've noticed this keeps me feeling so much more hopeful.  I don't need to know the reality.  I just need to know that all will be ok.  I trust that our God can heal and so I will wait.  While I wait, I'm not going to stay on an emotional roller coaster because honestly, all that does is cause more stress and worry to those around me.  So, we adjust.

I often hear that God will only give us what we can handle.  With each trial he throws at us (it's not even a gentle toss) we respond with, "we can handle this," but I do think we've got to be getting close to all that we can handle.

Wyatt had a thorough 2 hour appointment with two wonderful neurologist's at Children's Hopsital on Monday.  Wyatt has been diagnosed with Tourette's, ADHD and migraines.  We have known for a few years about Wyatt's tics and have discussed it with his pediatrician.  When a child has tics for 1 year or less, they are just tics but if it lasts longer than a year it's Tourettes.  Wyatt started having tics when he was about 4 or 5 years old.  It started with throat clearing, then moved on to hard blinks of his eyes, followed by eye rolls and humming.  This is very typical behavior of someone with Tourretes.  Tourettes is a neurological disorder that usually peaks around the age of 9 and then declines after puberty.  In 20-30% of cases, the symptoms disappear entirely as the person reaches their 20's.  With Wyatt, he becomes much more severe whenever he is in any type of a social setting.  School, church, birthday parties, t-ball, gymnastics...  His anxiety levels were so high that he wouldn't want to go anywhere.  The neurologist said that the tics are not harmful and since there is no cure for them, the main goal will be to treat the anxiety.  The ADHD is fine because he is homeschooled so he is not required to sit still for long periods and he gets the attention that he needs.  He is doing great academically, but sitting in a classroom would be torture for him.  The headaches were a concern so we will try to track them better.  That being said... she thinks this is very possibly related to a mitochondrial disease.  We weren't expecting to hear that and it has been one of our biggest fears with our kids.  They are going to look more into what my recent genetic tests reveal so they can try and pinpoint my abnormalities so we don't have to put him through extensive testing.  I am really hoping it is just Tourettes.  Knowing more about what is going on with Wyatt makes things so much easier.  Understanding his behavior, why he does certain things and why he can't do certain things helps us adjust.  Educating myself with this new knowledge will arm me with answers when people ask questions, tease him, or become afraid of him.  I wasn't sure if I wanted to share any of this publicly but after thinking about it for a while, I decided that educating others is the best choice.  Wyatt knows that God made him perfect just as He has made each one of us perfect in our own ways.

The one constant we have had through all of this is your love and support.  I am overwhelmed by the outpouring of community support we have received.  We are so incredibly grateful for all the help, flowers, food, prayers and love you have given us.  Thank you!

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