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.   

The month of love

The last few weeks have been a whirlwind of activity and getting stuff done.  The good news is that so many of the things that we have been able to do were a much needed necessity and some others were simply fun. 

One of the things we took care of was a round of haircuts.  Libby and Rachael got theirs trimmed.  I had mine cut for my 40th birthday and not done anything since then.  Also added a color to both Libby and myself.  For me, anything besides grey... 

My loves at the joint birthday party.  Amazed at how beautiful they both are!  We were  celebrating Mariah's 22 and Jennifer and Caebhin's  birthdays.   We are so blessed to have our own little cohesive family unit.

Hear no evil, see no evil, speak no evil....  goofy kids!

We went to our dearest friends Gender Revealing party and it was so sweet.  We have waited for what seems like forever for Kim and Jeff Davis to have a baby and they finally let us know over Thanksgiving.  They had the sonogram on Wednesday and then took the sealed envelope to the cake place.  They had enough self control to actually have that info in their home and didn't cheat!  We had to wait until they cut the cake open to see what color the inside was- pink or blue.  And it was BLUE!  So very excited either way, I just want these two  amazing people to have a child that we can love!  (And a baby to add to our eclectic family!)

For the first time in my children's lives, I bought new furniture.  I mean, not little storage units, actual furniture.  Libby hasn't slept through the night twice in a row for months.  We have even started given her doses of meds at 12:00 am to get through the rest of the night.  She wakes up hurting and with her legs off her bed due to her being so spastic.  We decided that we would go and get her a larger bed and new mattresses. It was delivered on Saturday and  she slept ten hours that night. 

I'm ashamed that I was never able to buy Mariah a nice bed and dresser, we just always had enough.  Not new, but enough. 

We finally got a new dryer.  A dryer that works.  A dryer that doesn't scream the whole time.  The last month it was taking 12 hours to dry a load, so I was planning accordingly...  This was my yoga/fix the hook up work out. 

 

We have applied for our Visa's and are anxiously waiting to hear back.  Our trip is tentatively scheduled for May, which means we will have to miss school.  We will have to let those worries go for this trip of a lifetime...

Today, we had a family meal and then went to fly kites.  Sad that Mariah and Bobby weren't here, but understand and they were missed. It's crazy that today it got up to 61 degrees and we are under blizzard warning and watch.  Jasmin and Xavier had never flown kites, so we rocked it out at the football field.  It was a beautiful day and a beautiful experience. 

We did get a blizzard and I must say that being snowed in makes me very happy.  We were home warm and safe.  As soon as the wind stopped howling, Libby loosened up some.  Beautiful 3-4 ft. drifts around our house.  Simply beautiful.  Very worried about those who were out and about in it and those who were stranded.  Our amazing little community opened up two churches to provide warmth to those who were stranded on the highway.  Our small town is one that is full of very giving people.  We are blessed. 

 

Libby has a rough winter and I am ready for roller coaster of temperatures to settle down.  Every time the pressure changes, she reacts.  With each cold front and warm front, she reacts.  She has become so Spastic and our ugly friend Dystonia takes her quite a bit.  We have an appointment on March 6 to get some botox for her left side, I am hopeful that will help some.  I have also been weaning her off of the Artane, which is a Dystonia drug.   Not a fan of this drug at all.  This has been a rough winter.  Her body and her symptoms are changing and we can't get in to see our doc in Ft. Worth until June.  Just hoping that we can get her some relief. 

 

The changes we have began are a big deal for me.  I know that I have been wearing my bedraggled look as a kind of armour.  As a way of showing the pain I feel to the world.  How can I look good and confident when so much has happened and is happening?  There are so major things coming down the line in our future and I have made the decision to let it go and begin trying to care about these little things.  I went to the doctor for an actual visit for the first time in over five years.  I was told that I was very near total exhaustion and left with lots of blood work and hope.  I got my eyes checked and learned just how blind I am.  I am trying to work out for the thrill of it, not just because I have to stay strong for Liberty. Guilt and grief are ugly to wear and I think it is time I began laying them aside. 

During this month of love, I am trying to learn to love myself. 

I have given so much away that there was little left.  Now, I am realizing that although so much is required everyday, I HAVE to save a little for me. 

Not sure exactly how this works, but I am trying. 

You see, there may be hope for us all. 

Giant steps

I was blessed to be given the "You Rock award" at school.  Means that a student took the time to write about me.  Coming from one of my kiddos, this is absolutely amazing!!

Rachael got her hair spray painted pink for her school's Breast Cancer awareness Pep Rally.

Libby, with Cindal behind, at our Pink Out Pep Rally.  Caprock raised over $1000 to donate to the Harrington Cancer Center.  Wow!  The stands were filled with PINK! 

Liberty on the Lite Gait.  Imagine a time when she could walk without sooo much effort.  It has been way too long since we have seen her take real steps, full stride steps. She was taking giant steps!  Steps forward.....  It was the folks at TurnCenter who are trying this out for Miss Libby.  Hoping the video will work.  If it doesn't it is uploaded on Facebook. 

 

Tomorrow begins week nine of classes in this school year and I feel like I've been hit by a truck- repeatedly!!  We just keep getting back up and going back at it.  The added strain of the newest test in Texas, STAAR, is making Rachael and I struggle more than ever before.  My campus also has new administration which means lots of changes and different expectations.  It seems as if due to the low test scores, everyone is so busy pointing fingers and assigning blame for why the kids didn't pass, that we're not focusing on teaching.  Too much pressure for a test that we have very limited information on. I am surrounding by amazing teachers everyday who are doing the best they can.   We are all pedaling as hard as we can.   Sooo much to do all the time.  We are trying to stay afloat.  I've been wondering why I didn't go for the coaching position or teach speech?  We have to keep focused on doing what is very best for the kids and remembering that they are what are most important.   I just want to teach.   

 Libby's new med for Dystonia, Artane, brings with it some less fun side effects.  This drug dries her body out inside, which has meant some troubles getting enough water into her her.  Another fun little addition are the nose bleeds.  Pulled up at school on Friday to a real gusher!!  "Yuck" and "Gross" are Liberty's reaction.  So, more fluids and cold mist vaporizer all weekend to help ease the drying.  Every day she is so different.  Today she is wiped out and there is no explanation.  No cold front, no hormonal business, no pork sneaking into her diet, no idea.  I am always glad when she has a rougher day and we are at home.  That way I can lay her out flat for some mandatory rest time. 

Had a couple of emails from our WISH Granters and do to time constraints and Libby's need to rest, they are now looking at a cruise to Europe!   WHAT???   Seriously?  A cruise?  With lots of nap time in between this might be wonderful!!  We really hadn't discussed cruises since Libby's experiences on boats has been small fishing or skiing boats and her equilibrium is off. 
My response was "as long as she gets to see Rome" she will be delighted!   I asked her about it, and she is nervous about the thought of a big boat.  I gotta admit, I am too.  How much Dramamine can Mommy have and still be able to function?   Just completely fascinating to look cruises up.  Disney does go to Europe, in case you didn't know.....  Still can't believe this is a possibility.  Still can't believe that my child qualifies.  Just can't believe....

Talking with Rachael and then Momma the Hun, AKA April, last week and I came to a realization.  It is not that the grieving process is completed in one round.  You have to cycle in and out of the stages many times.  This year, as I am dropping Libby off in the ACC room, I feel a sense of disbelief and pain.  I didn't have a child who belonged in there and now I do. I was supposed to be the person who always helped those kids and went above and beyond to make them feel accepted. I was raising my daughters to accept every one and be everyone's friend. Now, I have a Special child and have to rely on the kindness and acceptance of her peers.... There is also the acceptance of knowing that she is loved and well cared for within this group of Special friends. 
There are the late night fears and guilt that can still take my breath away and bring me lower than a worm's belly.  The different choices I could have made to keep Libby safe, the What if's and How come's..... I had been thinking that I should be over it by now, and most days I am.  I have an acceptance of the life ahead of us and the adaptability required of me to keep her healthy and happy. 

After seeing the video of Libby walking on the Lite Gait apparatus, it occurred to me that that is what I need- metaphorically.  I need belts and springs to keep me moving forward.  I am also on a tread mill, not the kind that my middle aged thighs need, but the grief mill.  I take three giant steps forward and fall back- on and on.  As long as Libby keeps taking steps, whether they are the little Mrs. Magoo or giant heart leaping steps forward in progress, it is enough.  It doesn't matter which round I'm currently going through in the grieving process, I'm still moving. 

We have to keep moving. 
Now, I have to wrap it up as I watch Libby get homemade tartar sauce all over herself and the chair.  Must be some really good fish sticks.....lol

Hugs and hope,
ileana