Growing Pains

 

 

In four days Liberty will turn 16.  I have been contemplating what this means to all of us.  There is something special when a girl turns 16, they begin the official move from girl to young lady.  For Mariah's Sweet 16, we had a proper meal at church with all of our church family.  Then, we had a teen party with food and dancing at home.  We had the whole place decked out in Rock & Roll 50's style decorations.  Mariah's boyfriend was even there and we had a great chance to welcome the young adult she was becoming.  We still have the pictures hanging of the girls dancing with their Grandpa.  It was fabulous. 

 

Libby's Sweet 16 should have been a time of me biting my tongue as all of her teenage friends are hanging around and boys are flirting with her.  We should be going to get her Driver's License and finally dating (we made Mariah wait for "one on one" dates until even after she was 16!).  We should be arguing and experiencing the back and forth pain, between parent and child, of growing up.  These were the ideas and dreams I had before.  I am not so different from many parents of Special Needs children.  While I was thinking about all of these things I allowed myself the time to grieve where we would have been and how our life would have been.  These things are not in the current schedule, but at some point they may be for my child.  I have the blessed chance to love this child how she was before, how she is today, and how she may be tomorrow. There are many other children who will never have even the chance at any of the normal milestones.  I have to remember that normal is just a setting on a washing machine! 

 

Libby is not the child she was before this illness changed us all, there are still remnants in her and they appear unexpectedly to catch me off guard.  Libby is fabulous as she is now (bias showing) and her sweetness is NOT something I would take for granted.  We could have lost her completely and I remain exceedingly grateful that there is a chance for another birthday celebration.  

 

I share to share and not to whine, to be open and honest.   Sometimes honesty is ugly.

*****************Stressors aka Reasons to NOT get out of bed****************************

--The last couple of weeks have been very hard on Liberty's body.  Greater increase in spasticity and her Dystonia and overall rigidity have made life challenging.  Swallowing is a greater issue.  She hasn't slept through the night without waking me up with pain in a long time.

**Libby NEEDS a new bed that is more suitable to her body and our situation.  She should NOT wake up hurting if we can help it all!!!  (A bed and frame that can withstand us moving her around is not cheap!!)

--My mother, who has been disabled by many, many diseases for many years, had a birthday on the 4th. My mother has been devastated by what has happened to Libby.  My Grandmother, 96 lives with her and is healthy, but her mind is tired.  Both of them have declined significantly in last few years, but our love hasn't.  Before I was able to help them much more, now I have to think of Libby first.  I am not the daughter and granddaughter I should be to these ladies.   

--Our Grandma Linda who has been our Rock has been experiencing extreme pain and has had great difficulty walking and simply moving.  After several tests over the break, we know she doesn't have blood clots in her veins.  Now, we are waiting to find out about her arteries.Linda has no health coverage and the ability to pay slowly out of pocket is not always welcome. Many thanks to BSA and their uninsured patient plan which has allowed is to get the tests done.   Last night we rearranged her living room so that her emergency wheelchair can be moved through.  I know between the prayers, doctors, medication and procedures Linda will be okay. 

--The constant worry a mother has for a child who is grown and has built her own nest.  Mariah is amazing and I trust her and know the world is much better with her out there kicking it's butt!!  

--My car, which I have signed over to car parts as it is totalled, is no longer mine.  The car I have been driving and quickly falling in love with is not really mine until the bank releases the old loan.

--Money, Money, Money

--School

--Exhaustion

 ********************************************************************************

This morning I woke up to the amazing smell of the roast I started before I went to bed.  My plan was to eat a huge meal and take a huge nap.  Right after we all finished eating, there was a knock on the door.  (The one morning that I hadn't taken care of the floors and straightened everything up before the house was awake!!  :)) Standing there was one of the sweetest girls Libby has grown up with, Myka. Many of the kids she grew up with haven't remained close to our girl. Libby's decline and change has been very hard on these kids. I have tried to have conversations with many of them to comfort them, but when the friend you had disappears and changes into another person it has to be heart breaking. Myka is a sweet spirit who has always been willing to sit and try to talk with Libz.    We have to remember that there are children who have had to grieve the loss of their friend and accept this new version.  This was a message for me today to remember that Libby has touched many lives and to not focus on my loss - there are others that need to be reassured that there is a divine plan for my child. To see Libby sitting with a friend, who chose to come to see her, singing and playing games was amazing. Humbled and amazed.....

Several other children have tried to maintain a relationship with Libby and for them I am also grateful; Michayla, Rachel, Desiree, Haleigh, Beth, and a few others. I appreciate these young ladies and their example of love and acceptance.

 

I asked Libby this week what she really wanted and she said a Princess party.  We are calling her upcoming part Liberty's Royal 16.  Everyone is encouraged to wear their Royal attire crowns and scepters included.  Place, food, and some decorations are chosen.  I am hoping that many, many people will celebrate this important milestone.  We are going to celebrate where are now and how far we have come.  There are many more blessings available than there are stressors on our lists!!!

Myka and Libby

Rachael and Xavier rearranging the tree since Grandma Linda isn't ready for it to down.  I don't think any of us are.

Kids at a doctor's appointment all very well occupied. 

Our girls sharing...

 

In the midst of the daily stressors and speeding through life, we have to remember that there are little blessings scattered throughout.  I was humbled by a 15 year old yesterday and grateful for the lesson.  Even when the mountain of stressors seems insurmountable and there doesn't seem to be a reason to get out of bed- we have to!  There hasn't been a mountain placed in front of us that we haven't eventually been able to climb or tunnel a way through.  Someday I will get that screaming, kicking tantrum and a chance to hide under the bed, but that day isn't today and it isn't on the schedule for tomorrow-- I have celebrations to plan and many people to love.  Everyday we have choices to make and we can allow our growing pains to overcome us or keep moving on!

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