Angry, Sad ... Who knows

It is nights like last night that make me angry at my situation.

My poor Jack is sick.  We thought initially he was just teething but now I am convinced it is something more.  It started with a small fever which has now turned into a big fever!  My poor baby woke up around 1:30 am screaming.  Kelly went and got him out of his crib ... crying, sweating, and obviously very uncomfortable.  I remember only a couple short weeks ago when I was sick.  It was total torture.  Sweating and still chattering, freezing, being exhausted yet unable to sleep and I can see all that pain in Jacks eyes.  Now I know it's just the flu or something but it is so hard seeing your kids in pain.  It's not like you can reason with them so they understand it will pass.  All you can do is make them comfortable.  

For me it is like a punishment.  Paralyzed in a bed listening to your child scream and cry.  All I want is to be able to hold him and make some small effort to make him feel better.  

But I can't

Since I got sick and stuck in this bed, I have had little to no function or strength in my arms.  Jack doesn't come to me very often ... and definitely not when he is sad, hurt, or upset.  My poor child has had to find that comfort in someone elses arms.  The only thing I can do for him and myself is cry with him.  

I HATE sitting here and feeling helpless!

When does it get easier?  How do people with permanently disabilities do it?  Do you really ever come to terms with what has been dealt to you?  or do you settle for living life a little less?    

I am not ungrateful for what I have.  My amazing husband takes great care of me and the boys.  My parents took us in and help with much more then they should have to.  I am sealed to my family forever.  I have two beautiful, healthy boys.  Support from friends and the community.  I have much to be thankful for.  

My life like everyone's is speckled with bad days (or nights) ... hopefully today will be better.

Church

I was able to go to church Sunday for the first time in 27 weeks!

It was such a rush of emotions!  The minute I went through the doors I was fighting back tears.  I was almost in disbelief ... it felt like such a huge milestone!  It seemed like such an unreachable goal.  With the help of my family though I made it.  

 It was so good yet so awkward at the same time (I am sure my lime green wheelchair didn't help .. ha ha).  It was so good to be back at church with my family. To hear the hymns, the speakers, to feel the spirit, and to see everyone who has been supporting us since we moved in with my parents.  It was awkward because inside I just feel so different now.  Everyone was incredibly supportive and gave me hugs, pats on the shoulder, kind words, and I could see in their faces they were truly happy to see me there.  Inside I felt so good and like a freak all at the same time.  Now I know that no one thinks I am a freak by any means, but it's hard to keep your self image realistic.

We only stayed for sacrament meeting because by the end of that hour I was wiped!  I realized how week my lung capacity is.  Between singing and chatting with everyone, I kept getting dizzy and light headed.  Even though I have made huge strides in my breathing .. there is still so much more to go.  It's the simplest things that seem to keep coming back to haunt me. 


Overall it was such a good day.  It took a three hour nap that afternoon to recover ... but we did it!

Faith

I heard the devastating news of the Sullengers. 

My heart aches for them. 

As I read of their struggles and losing their little girl; I shed tears.  Their adorable little Preslee is just two months older than Jack.  I can't fathom all the emotions they are feeling or do I like to even imagine how I would feel if my precious Jack were no longer on earth with me. 

More than feeling sorrow while reading their blog ... I was inspired!

Though I am sure it is not easy, their faith and trust in the Lord seems solid.  They are comforted by their knowledge and belief that everything happens for a reason.


I have realized this is the perfect time to work on my personal relationship with my Heavenly Father.  I have felt comfort through this whole 6 months that everything will be ok.  I am thankful for the spirit I have felt.  So much good has come from this struggle.  I have made great friends, been humbled by all those who have done services for me and my family, and inspired me to one day pay it forward to others in need.  

Those who have brought meals, shed tears, paid visits, done fundraisers, offered prayers in my behalf, and simply offered encouragement are not unnoticed.

I am thankful everyday for all I am blessed with ... even during trials!

Out On The Town

Yesterday was a CRAZY day!

I had a Dr. appointment in I.F. so I convinced my husband and my Mom to take me to the hospital to visit some friends.  It was SO good to see everyone!  I really feel I have so many good relationships with the nurses and therapists there.  It is really is like a big family reunion to me.  It's such a good feeling to go there and know they are rooting for my recovery!  I love that I can banter and laugh and have meaningful conversations with them.  After an hour there we loaded up again and headed of to the Dr.

We went to visit the neurologist.  Dr. Garland has seen me since the day I was admitted with GBS.  He really is such a great Dr. and he is always telling me I should write a book.  I was a little hesitant to go see him.  I was sure we would go through all the effort of going up there just to hear "Yep it's still GBS ... keep doing therapy".  Although that is pretty much what he said we did get some good news.  I have reflexes again!  Reflexes are a great sign because it means I have healed enough to get them back!  We also talked about plasmaferesis.  It is another possible treatment that may speed up my recovery.  Overall it was a good visit.   

Therapy 7.20

 During P.T. Friday my therapist said she felt a little kick back from my hamstrings.  I wasn't really sure because to me I always feel like I am pushing.  So I didn't really take it to serious.  I guess I try to be as real as possible about my recovery.  Even though I would LOVE to suddenly wake up and have my legs work I know that's just not going to happen.  I guess I just don't want to set myself up for disappointment.  I know it will come but I also know it will be RiDiCuLoUsLy slow.  

But now I know

 

We have PROGRESS!

I had a new P.T. come today and we did stretches and he mentioned again that there is push back.  

   I am pushing back!

After PT left I was so tired!  I had Kelly put me on the floor and I was out of it!  I slept for over two hours.  When OT came I mentioned to him what PT said and he got so excited he had to test it out himself.  He agreed!  Something is working there!  We also did some electronic muscle stimulation on my right hand.  With just a little charge I was able to wiggle my middle finger.  Hopefully it will stimulate more function!

It's so good to have these small reassurances that things are healing.  We pray every night for signs that I am getting better.  This is just an answered prayer!   Things are moving forward! 

Today was a good day!

Maternal Instincts

Being a Mom is something I have dreamt about since the day I got married.


It seems that from nursery age we are teaching our children about families, to "honor thy father and thy mother".  To have an innocent little child call me "Mama" fills my heart so full of gratitude, joy, and love.


Since getting GBS it also tugs on my heartstrings.  

It tears me up to have Jack come up to me in my wheelchair and I don't have the strength to lift him on my lap.  That I can't jump out of bed to pick up Talon when he's fussy.  That I can't hear the Jack's giggle that he supposedly makes when he is put in his crib for a nap or go get him first thing in the morning.  That I can't nurse or change Talon's clothes ... even his diapers!  I could seriously go on forever.


It's probably been the hardest thing about GBS.  The paralysis stinks ... don't get me wrong but the emotional struggle I feel internally every minute is so much more to bear.  I worry that I won't have unspoken bond with them.  That Jack's tantrums may be more than just his age, maybe he has some resentment towards me for abandoning him.   I have a feeling of detachment from my children.



I just try to remember that Jack and Talon are my miracles.  


Jack was brought to earth with such a mellow attitude, an independance, and now I understand why.  He has been through a lot in his short 17 months.  He is so lucky to have loving Grandparents close by, who without question or complaint took him in and raised him.  He will always have a closeness with them I am sure.  That is a true blessing from this situation.


Talon is here ... and he is healthy and as perfect as can be ... and that is truly all I can ask for.  I couldn't understand how I could have a perfect baby inside while everything else was wrong.  I always had a sense of comfort.  Deep inside I knew that he was suppose to be here and this was the only way.  Everyday he is a reminder to me why I fight this battle so willingly.


My day is coming.  It's just around the corner.  Even if it takes me two years to recover I know I have the rest of this lifetime with my children.  I am thankful  I can have children, I know that is a blessing.  Better still, I have eternity with my family.  This life isn't perfect.  I am not a typical Mom right now but I have others who are helping to teach and guide them.  Even though I can't feed them, or bathe them, I can love them and do the best I can.  


My maternal instincts are there and the Lord is guiding me. My role is a Mother .... and no matter how I feel, I know I will always be "  Mama"   to Jack and Talon and that's enough for me.  

Therapy 7.12

Therapy is good.  I enjoy working with my therapists and seeing the small improvements everyday. 

Yeserterday I worked with my PT.  They usually do range of motion on my arms and legs before we really move on to anything else.  Luckily 3 of my 4 limbs have all stayed pretty flexible ... my right arm hasn't been as lucky.  It's not unfixable, it just needs a little more time.

 

After ROM we get into the tough stuff (for me and most infants) ... sitting.  I am moved to a sitting position on the side of the bed.  My therapists do this most often by grabbing under my legs and behind my back and spinning me.  Once I am stable on the side of the bed we do a variety of exercises; leaning on to my elbows and back up, reaching across my body, leaning forward and back.  They are all to strengthen my abs.  It's good because I can feel my muscles contracting again, like there is something besides flabby mush in there again.  

No wonder infants have such a hard time!  I had to learn to hold my head up again, to sit up, to push through my elbows and when I lay on my stomach, and I am attempting to roll over.  I seriously know the frustration they must feel as they grow and learn new tasks!  Maybe that's why we don't remember it.

Rough!

I hate for my first post to be negative but the last two days have been rough!

Friday my CNA came out.  She took my vitals and I had a 102.2 temperature.  I knew I felt crappy but didn't know why.  This also explained why I had been up half that night freezing my duff off.  The chills were so bad I chattered for over three hours early Friday morning which in turn gave me a MONSTER headache.  Kelly had to run a urine sample into the hospital to be cultured.  I didn't get my results back until Saturday morning ... Yep I have a Urinary Tract Infection.  I really wasn't too surprised since I was on antibiotics pretty much the whole time I was in the hospital for UTI's.  I don't remember feeling this crappy in the hospital though.  So for the last two days I have been fighting a vicious battle between chills and overheating.  I have been popping Tylenol like crazy.  I  haven't been able to eat much and the only thing that sounds good is greasy fast food ... so whoever wants to bring me a burger and some fries come on over!  ;)


I can't  go to sleep tonight but the best part about it is that there is a AWESOME lightening storm going on right out my window.

The Beginning

2010 was going to be a year of excitement. 

My first son was turning one, I was due in early July with number two, my husband was turning 30 ... life as our family was just beginning.  Little did I know my genetic scheme would turn my life and my families life upside down.

January 13th I was admitted to the hospital with Guillian Barre Syndrome; a rare autoimmune disorder that affects the peripheral nervous system.  Once a busy full time working mother I was now paralyzed from the neck down.  The H1N1 vaccine I received 6 weeks earlier affected the mylon sheath around my nerves not allowing signals to travel through my body.  Although recoverable, it still takes time.

I was admitted to the hospital and spent the next five months there .... 8 days in ICU, 21 days in Cardio, 48 days in Rehab, and 70 days in Women's Center. 


I was released on June 9th.  I came home with a healthy 3 week old baby boy, good friends I made in the hospital, one enormous bill, and a long road of therapy, pain, cramping, progress, and relearning ahead. 


This is my journey to recovery ... the good and the bad.