Returning

I have not written for a variety of reasons, but first and foremost life has kept us very busy.  Over the Break we went to a variety of doctor appointments, cleaned things out and organized around the house, worked outside, and went to Palo Duro Canyon to have our pictures taken.  Today was our yearly celebration of the kids Adoption Day and I was grateful to have the whole family together.  Pics will be shared soon. 

 

Mariah turned 22 in February and her wish was to have family pictures made in the Canyon. Except for one brief excursion to see the play "Texas" we had not been to visit what is one of my favorite places since Liberty became "differently abled".   I love Palo Duro.  Words cannot express the connection I have with this majestic part of the Panhandle.   Our countless days camping, hiking and working there are some of my happiest memories.  We would find Libby sitting on top of a hill silently, looking around and loving nature.  Returning there and having these pictures made are a sign of healing in my heart.  I haven't been able to go back there because everywhere I turned I saw the Libby I used to have.  (We will be having a whole group set of pictures taken very soon.) On our way out, the song "I'm Ready" was playing.  I cried and relished the return.   

 I also managed to go through many of Liberty's toys and my craft stuff.  Except for the things that she saved for Jasmin and Xavier to play with, I only kept the toys that the child I have now can play with.  This realization hurt and I let it hurt. I am now working towards letting it go. 

 

 

Pictures taken by Melissa Simons, 719 Main Photography. 

Having these amazing pictures of the girls is a gift.  Seeing them interact and the gentleness that Mariah has for her sister is a gift as well.   I cannot say enough about how wonderful it is to have a grown child and to truly love her as the person she is and who she is becoming.  I know that Mariah continues to deal with the pain and grief of what has happened to her baby sister.  I cannot do much to help to alleviate this except try to model a return to healthy.

Liberty has the Make a Wish cruise set up in May.  We are doing a Western Mediterranean cruise and will leave sometime in late May. I have never taken a personal day and have never been away from my students for so long except for the first long stay at Cook Children's.  Rachael will miss 7 days of school and I will lose 9.  We will both be docked for many days and our schools are working to figure out how many.  Not sure how that will work and how the money will work in June and July, but I'm not going to worry too much about it.  This is too important and is a once in a lifetime chance.  And there is no guarantee that she will be able to go later. 

We have an appointment in June to return to Ft. Worth.  We are going to see her regular Neuro, Dr. Acosta, aka Dr. Hottie, have an MRI and meet a Pain Specialist Neuro.  Because of the cruise, we have put this appointment off.  Something is changing and we are seeing marked slowing of movements, increase of spasticity, dystonia, and she's locking up more and more.  We weaned her off of the Artane as it was making her more moody and her locking up was more and more. She also began having severely limited urination, severely.   We may be retrying this med as she is still having some of the same issues.  She has been getting more Chlonopin which I do not like.  She will even ask for a pill when she is hurting and locked up all over.  Her right side, especially her right hand, is becoming greatly affected.  Among other things this means that I am feeding her most of the time.  Lots of great bonding time....

Her hands after medication and resting without braces. 

There is a grieving continuum that Special Needs parents rotate through constantly.  I have decided that I am going to love the child I have now.  I have allowed myself to look at old pictures of her and of the family.  I hadn't been able to do that in over five years.  In order to live today fully and love the child I have now, I had to return to those pictures and memories.  I loved her then and I love her now.  And for every one's benefit, as well as my own, I have to return.  Return and remember how many exceptional things this child was able to do and experience.  Return and remember the family we were and embrace the people we are today.  I will rejoice in the chances the tomorrow brings.

Tracy Chapman singing "I'm Ready"

 
Enjoy a little Tracy Chapman and imagine how tomorrow would be if we could let go of yesterday.