Friday, April 20, 2012


Sometimes when I sit down to blog, I find it hard to write.  And other times, things flow easily.  Lately, my challenge hasn’t been what to blog about, but to take that jump and blog about something deeper, which are often the hardest for me.
As you know Anna Cate had tendon lengthening surgery at the end of September.  Where we are now with her recovery, I would have never thought that we would be in these shoes.  The shoes that so many other families wear every day.  The shoes where your daughter’s mobility is truly an issue and now needs your help in another aspect of her daily care--walking.  This has been extremely hard for me to see and deal with as this is not my daughter.  My daughter is swiper, Mia Hamm, the energizer bunny, the little girl who will not sit down but is constantly under foot.  
Anna Cate wants to go and do just like before, but her body’s recovery time is prohibiting her from going and doing like before surgery.  Sure we have great days when I think we are rounding the corner and coming out of this rut, but then we go back to the “new” walking since surgery.

About a month ago, something inside told me to call a new therapy center and see if they can do an evaluation on Anna Cate and if their technique could indeed help her.  I called, Richmond HOPE Therapy Center, had an evaluation the next week and we have been doing therapy here now for one month.  Anna Cate is also being treated by her current PT at Children’s Hospital and both therapy centers talk and exchange notes on how to best help Anna Cate.  I love this.  But what I love most, is that Anna Cate’s new therapy center is pushing her to her limit with stretching exercises like you would not believe, but the therapists do it with a smile and love.  And the fact that Anna Cate has a smile on her face too is amazing!  The HOPE that they are giving her and us is that her walking will come back with the correct amount of input that her body needs right now, is priceless.  

I have sent her therapists at HOPE pictures of Anna Cate running down the beach and kicking the water in the ocean as inspiration to them.  This is the little girl that I miss.

You know the old saying, “you don’t know what you have till its gone”...this could not be more true for me than it is right now.  For all the times that I would get frustrated with Anna Cate for throwing things or being on the go non stop where I couldn’t get a thing done around the house, as I had to be watching her every second, I would take all that back in a heartbeat to have THAT Anna Cate right now.
The “after surgery” Anna Cate wants to be pushed in her Wike Trailer instead of walking when we go outside.  The “after surgery” Anna Cate will stand up to try and walk and then just sit down after shaking and bending over at the waist as she is unsure of herself.  The “after surgery” Anna Cate is confused and wants to go, but doesn’t know how.
Richmond HOPE Therapy has given us a new HOPE and I saw it yesterday!!!!  Anna Cate had therapy in the morning and they taped her muscle on the front of her surgery leg (the anterior tib) to help that muscle do what it is supposed to do when we walk.  Well, when she came home from school yesterday, she did not want to sit still!!!  She was walking all over the place.  About 80% of the time when she was walking she was mostly upright and not walking bent over!  I was so excited, that I was taking pictures and videos left and right.  I didn’t want her to sit down, I wanted her to walk all night.  I wanted her to sleep standing up to not lose this....ok....maybe not this, but you get my point how excited I was!

I think that I was equally excited, because I have been praying at night for this very sign.  A sign that she still has the skill and that she can still walk, but needs the guidance and training to get back to where she was prior to surgery.  I needed a sign of HOPE from above.
Before Anna Cate’s diagnosis of Rett Syndrome our family went to church rather regularly, but right after her diagnosis and the birth of Eli we found it more and more difficult to go to church as we wanted someone to be there with Anna Cate in Sunday School so we could go to the Sermons.  I will be honest, we didn’t try hard enough and often let this aspect of our lives slip way.  Every New Year we would say this was going to be a priority, as we truly believe that this is something important and that we want our children to grow up in a church, but there was always something holding us back.
Betsie started going to church with one of her friend’s when she would spend the night at her house and then came home talking about how much she truly enjoyed it and wanted to know when she could go back to church with her friend’s family.  Seeing the joy in her face made us realize that we could not wait any longer and we needed to stop and make it happen.
Last Sunday the kids went to Mimi and Poppy’s for the weekend (my mom and dad’s) and Will and I went to a new church on Sunday.  This is the same church were Betsie has been going with her friend.  This church is HOPE Church.  When we sat down at the start of the service I had a feeling come over me that I can honestly say that I have never experienced before in my life.  At that moment, when the music started I started to get teary eyed.  I was shocked at myself as I am not the type of person who is super religious and cries in church (unless Amazing Grace is being sung as that always reminds me of my great grandmother’s funeral and it gets me every time).  But at that moment on Sunday I knew deep down that this void of not going to church was much deeper than I thought.  I knew at that moment that another of sign of HOPE was being given to me, to our family, that we were in the right place.  That HOPE Church was going to fill a void in our family that has been missing for far too long.
Not only does Betsie have friends who are members at HOPE Church, but Anna Cate does as well.  This is a huge bonus for me as we all know how much I want Anna Cate being around her typical peers that are not only her age, but that she actual knows.  And this will make the transition into a church family so much easier for her.  Eli also has a friend from the neighborhood that he knows so everyone will have a “buddy” and not be jumping into a new church alone.
What does HOPE mean?  HOPE is a feeling of expectation and desire for a certain thing to happen.  My (and our) HOPE for Anna Cate in the short term is that she will gain back the mobility that she had before her surgery.  The long term HOPE for Anna Cate is a cure.  My HOPE for my family is that we can find a place where we can turn and build on our experiences and relationships with others and with God.  I know that all this will happen as I was given the direction of calling Richmond HOPE Therapy by my own prayers and we were encouraged by close friends to join them at HOPE one Sunday morning.  
Now I have to have FAITH and be PATIENT and know that with everything worth waiting for takes TIME.  But in the waiting phase, I am beyond thrilled to know that we have found two places that will continue to give us HOPE.