Royally 16

Here are some of the pictures- finally.  We had kept all of the decorations hidden from Libby as I wanted it to be as much of a surprise as possible.  We were able to set up the night before as Mariah came down to hang out with her sister.  Then, Rachael went up early to get everything finalized. 

I did my best to get the Princess all dolled up and as we walked into the Hall (Catholic Church Hall) it was a true gift to see Libby's face light up. 

I had been focusing on covering all of the decorations and food and not on what we would wear.  I knew I had a few prom dresses and Princess Halloween costumes in our closets, but none of them had been test driven for the now 16 year old.  (I also had not thought through the whole undergarment issue for Libby!)   Oh, and we had bought many tiaras to be used by guests and as decorations, but not one for our precious girl or ourselves.  Yep, that's me- worry about so many things and end up missing some very important stuff. 

Gratefully, Terri and Deb stopped on their way down and grabbed a beautiful tiara for the Princess.  Now, we were set!

Posing royalty here!!   Libby had a great time with so many of her Happy friends and of course with so much family around to show their love. 

Her beautiful cake!  I was super please by how her cake turned out. 
Check out Jasmin, our P.I.T. (Princess in Training)...

At one point, Libby insisted that Bobby come and sit beside her, which he did.  I am amazed at the kind consideration that Mariah and Bobby always offer for this child. 

Friends always- Myka, Desiree, and Haleigh- I LOVE THESE GIRLS!!

Just goofing around....

Jasmin patiently helped Libby go through all of her gifts. 

I cannot tell everyone how grateful we are to those that came to give Libby the Royal treatment.  Lots of adults sitting around wearing tiaras and silly crowns and doing so willingly!  My childhood Michele and her mom, Judy made it down.  It was wonderful to get to hang out for awhile.  My brother, David, made a special trip just for Miss Liberty's party.  Lots of sacrifices made to ensure that we could make this party happen and I am grateful to all and I am glad we did it. 

Thank you to everyone.   
Now, about the baby being 16..... guess I'll get used to it!

Ileana

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!