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!

Wrapped up

We were finally able to celebrate Christmas with the family. Libby sent her letter to Santa letting him know that we were putting the big day off until Jasmin and Xavier were back with us.  So, December 29 was our Fake-mass. We kept the whole tradition alive, friends and family are invited to a huge food-filled feast.  Everyone is invited to stay the night and wake up as a whole family unit to open presents.  The rule is that Christmas morning, all gifts are passed out and then in our somewhat circle we wait as each person unwraps one gift at a time.   This way we all get to share in what the gift is and how excited the recipient is! 

Notice the stacks of gifts as each one waits to begin.  Liberty had already waited for several extra days and I was worried that we might have a princess style melt down if the waiting continued.  We were not able to buy very much and did many homemade gifts this year.  I was very impressed by my sweetheart.  She was excited for her little cousins and their gifts and was appreciative of her own.  This is huge for us as we have been battling with a spoiled attitude, which I will not tolerate.  I know she deserves the world and more, but she needs to be thankful for it!  Liberty made me very proud of her kindness and her easy acceptance of waiting for Christmas.  She told me she wouldn't want Christmas without her cousins and to me that was the sweetest thing ever. 

Kim and Jeff Davis were able to join us and it is always amazing to spend time with them. Being around Kim and Jeff is a treat and I wish that we were able to be with them more.  They have many amazing changes coming in their lives and it is a gift to have the chance to be a part of their lives.  Rev. Belle and Carol were also able to join us.  Rev. Belle remains my spiritual mentor and I find myself just needing to talk to her, to touch base.  I appreciate these people so much and am grateful to know them.  Jamie, Jennifer's best friend, also joined in the festivities.  She has become another important part of our lives. 

Mariah and Bobby, plus a couple of friends, were able to be with us.  My big kids are just nice people.  Bobby fits right in and we love him.  He and Mariah are great together.  I must say that at the rate in which our crew is growing we are going to have to add bunk beds, tents, or we'll have people sleeping in their cars!  I brought up the idea of taking over several rooms at  a hotel in Amarillo that has a restaurant attached to it to make life easier.  As we were will still straightening up at 2:00 pm, it seems that a really good idea.  

 

I was filled with joy throughout the afternoon as I reflected on the heart felt gifs that were shared. The kind and thought-filled ways in which our family and friends were able to share their love is inspiring.  I am not a fan of lots of material things and this was all too perfect for me.  Life is not about more things, but about more love.

 

Libby waiting to head home on Fake-mass day.  She was locked up and super tired.  Major changes in her schedule make life so much fun.  When we know there is going to be a change, we start days ahead telling her of the upcoming change. The changes in weather cause her body to react in that sometimes she can't even move.  More and more she is getting what I call "T=Rex" hand where her right hand isn't working.  Not fun.  This kid should have at least one hand that works.  Here's a scary progression, her chewing and swallowing ability are also becoming more challenged.  Looking into different ways to feed her that are within her dietary guidelines. 

 

Liberty had asked for a baby doll and coloring books for Christmas.   We have been encouraging her coloring as it helps with her motor skills.  This princess/baby doll stuff is out of my league.  She has never really been interested in baby dolls before as she has always been into her stuffed animals and Lego's.  Now, she wants more of the typical little girl stuff.  For her sweet 16 birthday party this next month she wants a princess party.  I have taken flack for allowing her to have these somewhat little girl things, but when possible she can have what she wants.   My child has been regressing for several years now.  Part of my child's brain is not working any longer, she lost these parts before the age of 12.  If she wants little girl stuff for her Sweet 16, then so be it.  Unless someone can find a way to grant my wish and bring the parts she lost back, then a baby doll and princess stuff she will have.  Please know I am not enabling her decline but her happiness where she is and trying to slow the regression.  (Yuck, really don't like the whole princessy stuff...).  And I am not fussing, just addressing publicly what has been said to me. 

 

Tomorrow begins the new year.  I didn't have any goals for this year other than finish the Master's program and survive.  This year, I have a list, and much of it is centered around self preservation.  I have been on fight or flight response for too long.  I have been racing from one person's need to another without thinking.  The complete exhaustion I have been experiencing is not okay.  I am going to have to prioritize to keep myself sane.  Other people will have to step up to help with some of the responsibilities I have willingly and lovingly been taking care of.  Promises that have been made to us are forgotten. My life will become more focused on taking care of us and both of my children.  I keep giving myself away and have not saved anything.  

 

Life with Liberty is a marathon and I have been running it as a race.  I have to learn to pace myself and to stop waiting for joy.  I found this quote several weeks ago and it has struck a chord with me-"It could be senseless to go on waiting for a joy, when joy was on the doorstep, as time hurried by"  T.H.White, The Once and Future King.

 

I will be better at enjoying more and planning/cartaking/ stressing/ schedule squeezing/ guilt carrying LESS.  I will try not to be as wrapped up in so many things that other people could take care of and focus on what is most important.  I will stop waiting for joy and simply open the door to the joy that is waiting for me. 

 

Love and hope for 2013, the year I am calling the "Year of Yes".