Growing Pains

     When I was little I would wake up in the middle of the night with terrible leg cramps.  Jumping out of bed and hopping around- stretching until the pain subsided. It was years later that I learned that by keeping moving I made the growing pains release sooner.  In my world still have to keep moving even if there is a little pain involved. 

     We went to Cook Children’s for a refill on her Baclofen Pump. During the visit we were told that we would need to “find someone” to manage her pump and DBS now that she is “of age.”  Not what I wanted to hear. 

         I love this hospital- it’s doctors and staff.  It is here that we found so many answers and opportunities.  Our beloved doc, Dr. Hottie, has done the testing and questing for our girl for eight years.  It is my trust in him and this place that allowed for the placement of the deep brain stimulators and the baclofen pump.   I do realize that as she progresses we will need someone closer to where we live, and this switch won’t happen overnight.  I love this hospital, and it will hurt to not have the comfort we get there. 

Little One ready to deliver a painting to her doctor, and he wasn’t there.   

   

        Libby’s pump is pumping and her Deep Brain Stimulators are stimulating.  Her weight has been steady since December 8!  That is a huge blessing!  I was warned that as her conditions progress it will be harder and harder for her bionic interventions to make a discernible difference in her tone. I’d rather not know exactly how stiff and spastic she is without the muscle relaxer or the electronic impulses. Some relief is always better than no relief. 

         So, we will be stretching and moving through this transition to an adult neurologist.  Luckily, Libby has an appointment next week with her primary care physician for a complete check up.  It has been a shamefully long time since she has had all the blood work done, so I look forward to establishing a baseline. I will request the referrals needed and move through these growing pains.  

      Be blessed and know that you are loved and appreciated. 

ileana

**Following are pictures from the pump refil procedure. If you are needle shy don’t look.  

               

Birthday

    Tomorrow Liberty will be 21. In a different world I would have fulfilled my duty and finished raising both of my children.  In a different world Liberty’s body wouldn’t be fighting us at every turn.  In a different world I wouldn’t  have to pray everyday that the spark that keeps her her, stays lit.   I wouldn’t have missed the tick that triggered the decimation of her neurological systems.  Her body wouldn’t be fighting so hard against us. She would be whole, and I wouldn’t be a Forever Special Mommy. 

      But this is our world and she is turning 21.    The insurance companies have been calling and sending information since May that reminds me that she will be 21 and an adult. Reminding me that we have to have her adult medical coverage in place to roll it over before she becomes a legal adult.  I stopped counting the number of calls at 27.  That was in October.    Casually saying that many of her caretaking hours and various programs will be cut as she won’t need the same level of care once she’s an adult. Yep. They’ve obviously never dealt with constant incontinence  in an adult size body.  I am grateful that said insurance has been on top of her transition, and we believe we have the next few steps in place.  And many more appointments in the next month. 

      At her regular Botox in December we were reminded that as her body continues to stiffen and the spasticity worsens the Botox will have less and less effect.  My response is that any relief is still relief.   I have nothing but gratitude for any relief she can get.  She had dropped several more pounds.  This is a huge battle.  Getting calories in her as her body burns them constantly being so tight and spastic. Her muscles are constantly in flexion.  Constantly.  Even in a deep sleep.  That’s with the DBS, Botox, and the Baclofen pump.   Don’t want to see her without it. 

       Tomorrow she will be 21, and I am humbled. This day was not promised, none of them are, and it certainly wasn’t expected.  But I believed; many of us did.  I know Liberty’s journey has had a purpose. Some reason.  Some thing.   

       We are celebrating by fulfilling one of her dreams and showing her art work in a real gallery in a real art exhibit.  I am excited and pray she will love her Art Show.    We will have some finger foods and play her favorite music.   Hoping that so many of our loved ones will be able to make it. I believe it will be magical.   

     Happy birthday, Liberty Alaine.  May you continue to be a spark for all of us.   

Eight Years

        A brief and mostly complete history.  What’s been left out is the laughing and praying with splashes of gnashing and wailing.   

        2007-Liberty was normal and healthy through the age of nine. At this age she had three seizures starting that summer and ending within that year.  The first one was the night after we arrived home from a family camping trip to Southern Utah.  

        2007-2009 lots of tests in Amarillo, and then Lubbock, to verify and find the cause of these seizures.   They simply went away as many undiagnosed seizure disorders do in preadolescents. 

         Life rolled on ebbing and flowing through her upper elementary years.

        2011- In the spring we noticed Libby’s handwriting getting harder and harder to read.  We also noticed that her speech was changing.   We assumed that she was lacking confidence as her world was changing; the  loss of her grandfather and her sister getting ready to graduate. 

          We got her into voice lessons and really started paying closer attention to our little one.  

        2011- In the fall she passed her physical fitness test, and her yearly physical.   She started her menstrual cycle. Life started our great.  

          She starting stumbling and falling.    Was sneaking the bendy straws and spoons with her lunch.  Her handwriting was mostly illegible, and her grades were low.  Her locker and backpack were a complete mess.   We requested testing for learning disabilities thinking that those seizures could have messed up her wiring.   Or something else.   

           October 2, the diagnostician called on my way home. She had completed the testing and told me that she believed there was something medically wrong.  We were encouraged to take Libby to a doctor.    We did just that.  

             Libby collapsed walking home from school.   Neighbors witnessed the fall; her legs quit working.  Fastest drive from Caprock to Happy ever.  

             We went from family doctor, to NWTH, to Lubbock Children’s for lots of testing and no answers.   The Lubbock doctor said he didn’t know what was happening, but it was severe.  Libby’s motor skills were degenerating as if she had a traumatic brain injury.  We were referred to Cook Children’s in Ft. Worth.  

              Libby was no longer feeding or bathing herself.  We  were helping her dress.  She couldn’t be left sitting alone.  

             November- first visit and first round of doctors scheduled a few basic tests and scheduled us to return in a week.   We did.  We drove home, and decorated our house for Christmas.    I didn’t want to return home and not have that tradition glowingly greeting us.   

               Libby was checked into the hospital and there we stayed for ten days.  A few things they  tested for were: MS, ALS, HIV, cancers, Huntington’s, Wilson’s, Cerebral Palsy, and Muscular Dystrophy.  Tests done included lots of blood work, scans, lumbar punctures and a liver biopsy.  

             Libby continued to lose more and more of her faculties.   We were released with no answers about what was happening, but lots of info about what she didn’t have.  The doctor told us to get her baptized and prepare our family as they didn’t know what was happening.  

            We drove home on Thanksgiving Day.  Ate chicken nuggets from an Allsups.  

         We tried to keep her happy, but she a little wolf girl in captivity.   She does not flourish in the hospitals. 

             One test was completed in Amarillo on order from our new doctor: eye scans. It was the eye doctor who also tested for Cat Scratch Fever, Rocky Mountain Spotted Fever, and Lyme.   The Lyme came back positive. That is and remains the only positive test result we have ever received.   There was never a bulls eye rash, nor flu symptoms. 

 

           2017- November finds us clinging to our little one. She now has the neurological and muscular diagnoses of Parkinson’s, Bladder sphincter dyssynergia, 

dystonia, spasticity, ataxia and speech apraxia.   

 

            She has been on a five pill a day schedule for years; her main one is the Parkinson’s drug.    She has a baclofen pump, as of last Thanksgiving.   And Deep Brain Stimulator which we charge about every other day.    

            We’ve tried lots of things including physical and occupational therapy, clean eating, weighted blanket, and even blessed water.   Libby’s body continues to stiffen and struggle.  

         This Thanksgiving I will cook all the stuff and put up all the decorations.  I may even run the turkey trot.  I will relish every moment of this time.   This is the first time in these eight years that we haven’t been going to or driving back from Ft. Worth. The first time.  

           Nothing is promised.   Sometimes bad things happen for no reason.   Everyday we are blessed.   This is our bonus time with her and ourselves.   One day we may know exactly when she got the bite or where, but I doubt it.  I won’t hang my hat on that kind of answer.   Instead, I will focus on how well I’ve taken care of her and how happy she is.    

             Be blessed and realize your blessings.   Love you all. 

            

Stretching

Hugged between Halloween and Christmas, November has been a rough month for us for many years.   Every year we have had surgery, scheduled and unscheduled appointments in Ft. Worth off set to our classroom responsibilities.   November brings us both Rachael and Jasmine’s birthdays and of course Thanksgiving.  

This year, this semester, the past thirty days have been exceedingly stressful.  Ongoing issues with Liberty’s health coverage and missing or wrong or late paperwork has caused  parts of my world to come apart.   For over three weeks our attendants were not being paid.  I didn’t know from day to day whether or not the attendants would be able to take care of Libby so I could go to work.  Stress.   

Here’s one truth: there is no place for me to take Liberty during the day unless it we take her to an individual.  There is no “day care” for Libby.  Another truth: she can’t stay home everyday as it would not bode well for her health.   Think of anyone you know who is disabled and how quickly their body devolves once they begin staying home everyday. Libby, like many others, thrives on her interactions with people.   We have to keep pushing her to keep going with us.  

Libby has never been stiffer.  She is getting her relief pills before she gets out of bed as she is so stiff that I struggle to get her clothes on.  Her DBS battery checks out normal and everything that we can control is normal.   We know that the effectiveness of the Botox she has been getting for years is waning.   As her conditions progress we are to expect her be more and more rigid.  We have to keep her moving.  We go

for a visit in December.      

Two weeks ago we lost the amazing Tatum Schulte and Brandi Wilkinson.  The very young and brave Tatum had been battling cancer for several years with a bravado that is hard to find.  We didn’t know this young lady except through prayer chains and awareness posts.  The ever talented Brandi was a student of mine who I loved dearly.  Dearly.  She was a part of a very special group of writers who were in our Spoken Word poetry group.  The loss of these young ladies hit me in ways I can’t explain.   There is no rhyme or reason when these things happen.  We have been blessed to keep Libby with us for many years past what the doctors predicted.  Continued prayers for these families and friends. 

So, I’m not sure if hugging November is in order for me or not.   This year we are home for the big Turkey day- knocking on wood.  Want to run the Turkey trot, watch the parade, bake all the stuffs, eat a lot, and laugh with our beloveds. Want all the Christmas stuff up as we finish this semester.   Want to do, feel, see all of it. As we are surrounded by immeasurable blessings, we will be pushing the stressors away.   Knocking them down as we keep going and going.   Not only do we have to, but we GET to keep stretching ourselves.  That is part of our truth.   

Crutches and Crutched

      This is a reflection on the lesson I am learning through some somewhat painful experiences.  Not trying to brag or whine, just sharing.    Everything I do impacts Libby’s life- especially the things I fail at. 

       Last weekend, we divided and conquered as we signed up to be two places at once.  I had signed up long ago for a half marathon, the Mayor’s Half, and the Buddy Walk is a big event for my Caprock Key Club and ROTC.  I got up and headed to run my third half, and the final one for this year.   Rachael got Libby up and dressed and headed to the park to support the Panhandle Down’s Guild.   

      I was excited and apprehensive, as I am on any race day. There were pace runners available to help guide and keep us on track for our desired pace.  I was able to keep up with the pacer for three solid miles, which are always the hardest for me.  Excited that my training was paying off. Well, I tripped and fell at mile three.   My right wrist and left knee caught my body weight as I landed hard.  Thank goodness I had chosen my full length running pants or my knee cap would have been a bloody mess instead of the little raspberry I’m rocking.  

       I got up- painfully.   I got up and continued.  I didn’t know what else to do like so many other times in my life. I kept going.   Somewhere around mile eight I saw my friends, Tracey and Jamie Morman, and told them I had fallen long ago.   I just needed someone to know that I was trying to make it, and I was injured.  

       I finished. I finished the full 13 miles.   I finished and hobbled to the car.   I finished because I don’t know how to quit. When nothing else makes sense; keep going.   

      Drove to where Mariah lives and showered, then headed to the park where the Buddy Walk was happening.   I lost 45:00 after the race trying to get to the car, into the house, showering, back into the car, and to the park.  I noticed my knee swelling as soon as I stopped running. Not feeling so good and not moving very quickly.    

       We stayed at the Walk until it was pack up time and headed to meet the family for my birthday lunch.  My knee was getting so big and stiffening.  

        I am grateful for people who love and care for me.  The meal was wonderful and it was great to be able to sit with these people. It was at the restaurant after Rachael had to help me to the bathroom and back that I decided to go to the doctor.   

       Libby didn’t take any of this well.   My job is to be invincible and predictable.  Libby doesn’t remember me ever being really sick or of going to the doctor for myself.   She has been with me over the years for yearly check ups, but mostly she doesn’t remember.   Having the doctor come in and move my knee around while I made a little noise about the pain upset her.   I was wheeled into the XRay machine which did not go over well. When the nurse  came in with  the crutches and brace Libby was NOT happy.   Mom doesn’t get sick or hurt.   “Okay?”   “Mom, okay?”   Over and over again today.  I have tried to be her crutch for so long.  That’s what parents do.  

     I have always feared getting hurt and not being able to take care of Libby.  It is a real fear.   I am super careful and try to take very good care of my self.   I try.    I feel defeated over falling and hurting myself.   Seeing how much anxiety this has given her makes my heart hurt.  

     I run because it is the only thing I do that is just for me.  It is my release and my therapy.   It’s where I can release all my worry and anxiety.   It’s how I allow myself to push physically.  After so many years of  not taking care of myself: eating junk, not working out, and other negative behaviors,  I have landed at this place that has fosters this one positive outlet.  I worry so much about Libby and taking care of her that I fear the loss of this ability.    

       This last week I turned 47 wearing a knee brace and using crutches.   Thank goodness I have a Rachael who gets my over achieving personality.   Who gets the fears of not being able to take care of... she gets it.   I am grateful.  

       I have a group of people who I am priveledged to work with who have been so amazing helping and trying to help me do what needs to be done.   I am grateful.  

       I will not live in fear.   I will finish.   I will use the crutches to be the crutch for Libby.   I will.  

      

Not on My Watch

Warning: I will be discussing potty issues.  

We are six weeks into the semester, and it feels like we’ve been at it for much more.  Going through the days like running a gauntlet. Every semester is this way.   Libby loves her art class and instructor at Amarillo College.   

Working on and talking about art make her happy. Being a part of Amarillo College makes her happy and for that I am grateful.  

It’s been roughly two months since she had Botox and her Baclofen pump refilled and dosage increased.     The effects of the Botox will continue to wane and be less effective as her Parkinson’s and dystonia push harder against her body.   

People don’t want to talk about potty issues.  Nor is bathing and dressing someone who is disabled an easy conversation. It’s not as if I ever wanted to know this much- much less live with it everyday.  Embarrassment and inability to control are part of the reaction Libby gives us.  Too often she doesn’t know she’s pottied until after it has happened.  This incontinence is not my favorite, nor is it hers. No one wants to get the message that Libby has pottied again and needs a change of clothes.   Just not what I ever dreamed we’d be dealing with.   Yet here we are.   

(Yes we have seen a specialist and may return again. The interventions for lack of bladder control are not glittery.) 

Yesterday, September 30, Rachael loaded Libby up and took her to serve at the Buddy Walk of 2017.  This is an amazing group of people and providers.   The Panhandle Down’s Symdrome Guild are amazing in their work to support the families of people with Down’s.  

Jasmin, Xavier, and Grandma Linda were there to cheer and help out 

My Key Club and ROTC students were there is multitude. It is truly amazing to see so many young people give up their timeto serve others.  I made it to the park as soon as the run I had already signed up for was over.   

All of the little things we do every day to keep Libby happy and healthy don’t matter if  we can’t stay ahead of the body changing curve.   Her body pushes back against our efforts at every turn, and it’s hard knowing that.    We want her to be out and about, sharing her smile with the world.   Sometimes it’s too hard.   We have to weigh and consider how much energy she has and how much of it we can spend.   She can’t be stuck at Home dwindling away.   

Not today. Not on my watch.  Not for as long as we can.  

So we keep running through the race.   We just keep going on and on.  We have to.   We get to.  We are blessed with the charge of loving both of our kids and keeping Libby happy and healthy.   Everyday is a new challenge and everyday we find new ways of getting through.  In this way we will carry on.   

Be blessed. 

The Fort

     We are nearing the end of our summer at lightning speed.  The last week of school the dryer quit drying and the kitchen sink started sinking with a large hole eroded though the bottom.   We had already signed up to teach summer school to be able to afford the Colorado (fun) and Waco (literacy conference) trips, so we just added to the "where the money goes" list.   Now, both trips are done and the sink has been replaced, along with the laminate counter top, and the washer and dryer are space age new.   

      Liberty has been very stiff, very, extra Dystonia and Spasticity for months.  (Unsure as to why this is as her DBS and Baclofen Pump have remained steady since her check up in April. The last round of Botox yielded limited effects as she is so very spastic it is hard to tell any relaxing of the limbs or torso. 

      We are continue to live our bonus days with Miss Libby. Traveling with Liberty is both joy and stress filled.   Ensuring that she has what she needs and yet is part of the activity is an interesting dance.  We travel with a special potty chair, pillow, transfer blanket, pads, pull ups, battery charger, meds, proper list of meds and doctors, regular wheel chair (pink beast) and her adult stroller (KAM).  Plus a partridge and a pear tree.    It's not much different from traveling with any other children.   You pack to fortify your child safely- and happily- through your adventures.    

        It was months ago that I came to realization that we no longer needed the special fort in our side yard that we had built for Liberty after the Lyme hit and while she was still walking with assistance. It had a special ramp with a rope rail and lots of extra safety features.   We made it her pirate ship and bought the flags and booty to go along with it. She has not been able to get up into her fort in several years, and short of carrying her piggy back style she was not going back up.     

       For the last year, every time I passed it I felt guilty and sad.    The beloved fort was starting to list according to the push of the wind.   Stabilizing it was beyond Rachael and my skill set.  It wasn't getting love and attention from Libby, and so it was untrodden, unused, and mostly abandoned even while Jasmin and Xavier sat occasionally on the swings.  The pirate's place needed a new life with younger kids and lots of love.  

       It is hard for me to keep things around that remind me of what Liberty can no longer do.  It is just hard.    I've kept her Legos and a few other toys, a teenage girl purse or two, a pair of boots she loved to wear, a baby doll she wanted to play "Momma" with when her memory first left, and lots of stuffed babies.   But so many other things have had to go.  Many of these things just need to continue to be enjoyed and loved.   No sense clinging to what was.  

Rachael, little Dottie, and Kim worked diligently to take the fortress apart. 






Finally 

      I asked Kim and Jeff, our beloved friends, if they would take the fort and allow their kids to wear it out.  Gratefully they agreed and the fort will be rebuilt and some parts repurposed to meet the needs of their beautiful kids: Tommy and Dottie. Now the fortress will get a makeover and hopefully lots of love.   Sometimes letting go of the things is as important as the process of getting them.    Years ago, I had to get Libby that fort as she really wanted one and she loved it long after she could use it.  Now, it is time for it to create lots of new memories.