Friday, October 30, 2015

That is NOT OK to ask!

 People have been asking lately how I am doing.  They struggle with what are the right words to say.  Sometimes I intervene because I know what they are trying to ask.  Sometimes I let them struggle as they find a way to come out with some awkward question.  It's horrible of me I know,  but I feel like if they want to ask...they should find a way to.  Also, I struggle daily with feeling awkward and uncomfortable, so why shouldn't they for the 10 seconds it takes to form a question.  I told you, it's horrible of me I know.  Honestly, I don't mind being asked.  I feel that if my friends and family read my blog than they would know, but not everyone has the time or desire.  If I minded people knowing about my MS and how I am doing, I wouldn't share so freely here in writing.
So, how am I doing? I am doing exactly how MS portrays itself, good and not so good.  My Tysabri infusions and other medications seem to be keeping all major symptoms at bay.  Tiny symptoms(which I once thought were insignificant) plague me here and there.  Like the top of my head being completely numb, or inability to focus with me left eye(my only eye mind you), severe migrating pain after having dental work, biting my cheek so often that there is a permanent crease inside my mouth because I can't feel anything on the right side of my mouth.  They are little things and I don't want to pester the doctor every single time something new pops up....but is does make me nervous.  Even a tiny symptom could be the onset of a new lesion.  So, although I don't call the doctor each and every time, I do prepare for the worst.  You know those annoying people that must have every little thing in order and their house spotless before they go away.  Well, that's me!  EXCEPT.....  Each and everything on my To Do list is top priority because of this.  Things that could usually slide until tomorrow, or next week, or next month.  They have to get done today for I don't know if one of these "insignificant" symptoms is a sign of something bigger.  I don't mean to sound as if I have the worst illness known to man or I am going to die at any second.  I do realize that many other people are not as blessed as I am.  There are people not as "lucky" to have an invisible illness.  there are people with Cancer and imminent terminal illnesses.  I say imminent because MS is progressive, there is no denying that.  MS will be the eventual cause of my death....it will just drag out for years and years. Anyway, every morning I write my To Do list on the fridge.  Every little thing:
And every day it is a race to get everything done, along with the usual: Make sure the fish have a clean tank of water, hampster cages clean and hamsters fed, rabbits fed and watered, dogs have a weeks worth of food, floors are clean, laundry is done, dishes are done, bathrooms are clean and have extra toilet paper, front porch is swept, garbages are out, car is clean, banking is done....it goes on...

Really though I have been doing good.  Sometimes so good that I actually leave Crane at home.  Most times I regret the decision, but only after it is too late.  I go off to run my usual errands without her because I am very familiar with my stops.  Then, I unexpectedly stop somewhere I don't usually go and I find myself lost. The aisles are small, the floor is hard to maneuver, there are a ton of people...something...  So, I make it to the car and just come home.  When I get here, Crane is right there to give me the "I told you so" look. 
 This brings me to another subject I have been struggling with.  Everyone who really knows my journey or has read my blog knows what I went through to get Crane, how long I waited, the money I had to raise, how I had to leave my family for two weeks to finally train with her, etc..  Sometimes now I hesitate to bring her places because of all the questions I get from people.  Questions they shouldn't be asking like "Is she still in training"(meaning "why do you have her"), Is she your dog (meaning "why do you have her"), Why do you need her? Is she a therapy dog? The list goes on.  It is NOT OK for people to ask these questions.  I answer them, sometimes honesty and sometimes I just make shit up. It makes me feel awful. Like she is just an accessory.  Like I don't need her.  That is the look people give me, that I don't need her.  The right questions to ask? What does she do for you? What is she trained for? Where was she trained? Any compliments are OK too: She is beautiful, she is so well trained, she must be a big help (she gets these comments a lot and I love it).  Of all the things she does for me, I guess the most important thing, why she is just SO amazing, is that she makes me look like I don't need her.  Honestly, sometimes I don't.  However, she helps me even when it doesn't appear so.  Just a little tension on her leash or handle stabilizes me, helps me walk in a straight line.  Just her setting the pace helps me maintain my balance.  I know if she is walking steadily forward that there is nothing in front of me to trip on.  Just her being at my side lets me know I am not going to bump into anything on my right.  See, I never see her when we are out.  She is in my blind spot.  Sometimes my kids will tell me how someone "sneaked a pet" or she did something funny.  That's the amazing part.  I don't even see her.  Just because I don't see her though, doesn't mean I don't need her.

Saturday, October 3, 2015

Living the dream!

I guess children are always what drove me.  I used to teach riding lessons to kids, help kids, babysit kids.  I used to make plans to be a mom, thinking maybe I would adopt before I even desired marriage.  It was more than an internal clock.  It was different than that.  It was more of fulfilling the person I should be I guess.
  My horse was my child "back then".  I spent hours on end and days on end with her.  I used to take her jogging with me.  I took her to college (Kentucky) and spent more time in the barn than at school. My parents thought she was the only grandchild they would ever have.  My mom would sew her blankets and saddlepads.  Her (my horse) and I would have long talks and walks and I was even known to sleep in her bed rather than mine.  I ended up getting married. Family and friends would push me towards kids, saying "you will never know how your life will change, how it will teach you commitment or bring you joy until you have kids".  I assured them I already knew all that.  I had a horse.  She needed me just the same, brought me joy just the same, taught me commitment just the same.  I mean...I had to feed her 3 times a day, every day, pay for all her needs, etc..  I had her since she was a year old.  Then I had my daughter.
  OH....MY....GOD....Life change?  Biggest understatement ever.  It was then I realized the conspiracy of the "parents" of the world: To bring others right to the brink as those before convinced them to do.  I raised my daughter, part of that time as a single mom.  In that circumstance, there is no one to back you up, no one to take over when you are sick..or tired...or have to work...or...anything.  I did it though.  It was SO difficult.  However,  looking back, all those times when I had no one to lean on, no one to take over...those were the times her and I bonded the most.  Those times were something that most married parents don't have.  To this day, when things get tough, her and I fall back on those times that it was just the two of us.  It has a strength I cant explain.
  My "drive" kept tapping me on the shoulder, pushing me...shoving me.  I knew I wanted more kids, a big family. I had absolutely no idea how I would get there, but that was the goal.  I married my current husband, bottom line, because he was a good dad to my daughter.  Of course, we had more kids.  First my son...
 ... then another daughter.
...then we realized ...they out-numbered us.  Then friends and family started to tell us "it gets easier as they get older".  Let me tell you,  it is not getting ANY easier.  I leave the house 5 times on normal days only to get them to school and back.  My mom day begins at 5:50 am and ends between 9 and 10 pm.  I do get 2 1/2 hours off (for the first time in 3 1/2 years), but most of the time that is filled with school duties (volunteering, coffee hour, emailing teachers, checking grades, preparing for when they get home, etc..).  I look after a friend's children after school some days.  So, there are 5 of them.  They run and yell and play and..sometimes bicker and fight.. and mess things up and break things and eat everything and drive me utterly crazy.  And then when it ends and everything settles down and I realize I have made it past the breaking point and to the other side, alive.  THAT is the feeling I love.  That is my drive
   My children are what drives my energy, my spirit, my strength.  They are all I thought of when I was in the hospital being diagnosed with MS.  They are why I had to come home and why I had to get better.  Without them, there would definitely be some days I would not even get out of bed but they need me to. Or even something as simple as when Al is away for days and I am completely exhausted and all the kids are sick and all I want to do is sleep for just a little bit and someone needs a chocolate milk in the wee hours of the night and my body doesn't work and my eyes don't work and I don't have enough energy to go up and down the stairs. I cant do it.  I just can't.   But I do.
                                         Nothing is more important to me than my children.

  Our youngest daughter, Amelia, has a heart defect.  It has been observed since she was in utero.  Now, she is old enough to have it repaired. She is scheduled for heart surgery later this month.  The surgeons are very positive and assure us it is a “routine” surgery. The surgery will be done at Connecticut Children’s Medical Center on October 26th.  She is expected to be in the hospital for approximately a week.  During this time Al and I will both be staying in  Hartford with her.  During this week the main concern is inflammation around her heart.  After she is cleared by the hospital she will come home.  She will be at home (with trips to CCMC for check-ups) for approximately a month before being allowed to return to school.
   We are currently unsure about visitation, in the hospital or at home afterward. So,  If you live nearby and would like to stop in, please check in first with Al or I. We have had many questions by friends and family in regards to what they can do to help us.  As you can imagine, though the surgeons use the word “routine”, open heart surgery on your child comes with much stress.  We are not entirely sure what we will need over the next few months.  If you feel you want or need to do something, we are working on a list of things that could help Amelia and our family.  Just contact us.  Otherwise, we just ask of our friends and family the obvious...just give us a "free pass" for a bit here.  Accept our apology in advance for not calling back, or not wanting to go out, or forgetting things... and on the same hand...be there...call us back...come out if we need to get out..don't forget about us :-)  you know....the things you already do :-)   Thank you!