Prom pomp and Circumstances

Grandma was there for final alterations and to give advice on everything. We did meet Mariah and eat a nice meal before prom. Quite the blessing. 

Miss Beth Garza and Liberty- aka Betherty.

Not that either of us cried while holding her up and dancing.... 

Liberty and part of her class. 

On our way to prom and I admit to being a bit excited.  Getting Libby dressed  was interesting. The dress alterations and booby coverage were complete.  Libby even has on makeup.  Have to say she is a beautiful child- young lady. 

Irony is that the theme was "Once Upon a Time". 

Chair dancing!  She wasn't happy unless she was being helped and held up!

Two of our beautiful peeps who wanted to dance with Libby.  "Shorty get low, low, low..."

Notice Rachael getting a real workout holding the dancing queen up! 

I asked our Floral Design teacher to make a corsage and boutonnière for Libby and Rachael. Here, we are slow dancing. I am crying.

Prom and our circumstance. Very different from our dreams.  But grateful to have her here. 

Our lives are upside down and backwards, but we are blessed. 

http://youtu.be/xwsYvBYZcx4

The final picture is of Libby and I dancing to this song.    That's us.  "You're crazy and I'm out of my mind..."   

Thank you Rachael for holding us up. 

Thank you God for the chance to dance with this child at her prom. 

Genetic testing

Dr. Hottie and Mr. Surgeon want Libby to have a very unusual genetic test done, before the DBS, Deep Brain Stimulator surgery. This test would only give them, the medical folks, and us, more information.  The trick is that they would like for both biological parents to also be tested. Have searched and reached out for the other bio and no response. 

This test is the Whole Exome Testing.  The WES gives an exome by exome mapping of participants.   By testing Libby we will learn something that may give some answers and maybe even treatment options. 

The info came in the mail today and I was not ready.  We got Libby bathed and had dinner. I opened the package and was not prepared.     Some things you know are coming and you put them in a box for later.   Then, like a jack in the box, they spring up sooner than expected. 

Sorry it is sideways. This is the note attached to both of our permission slips. 

If you had a chance to have genes really checked  out would you?  

What if my WES says that I've passed this on?   (Then I couldn't control it.)

What if it says I didn't? (Then what if it is the other genes in her system?  Or, what if it is Lyme and there is no genetic marker?   

 

What if nothing is found in Libby and something is found in me and not Libby? 

The "what if" list is long and arduous.  It boils down to possibly "my fault" and "not my fault" or to "under my control" and "not under my control". 

When I asked Rachael to pace and talk to me that was normal. Sitting down in the middle of the little intersection to look at our property and talk and think was different.  A sweet neighbor asked, "do you need a bottle of water?" Which tells me I may act a bit more differently on a regular basis than I think.  "No, I need to think....and the perspective here is great." 

Would you? Is information always valuable?  Information does not have emotions; it is data, without feelings.  We bring our own junk to the table when we talk about information.  I believe in truth and have faith.  Now, gonna put this back into a box until we get past prom which is this Saturday.  

Libby is going to Prom- junior year.....

And a box with "incidental findings".... Prom and her glitter bra and dress are more important right now.  Yea, glitter bra.... Ugh

Thank you from Make a Wish

Hi Ileana!

Attached please find a note from our President & CEO, Scotty Landry, regarding Libby’s fundraising efforts. Thanks to her efforts, we were able to grant a wish like Braydon’s wish to go to Walt Disney World. I have attached a picture that you may share with those who attended Libby’s birthday party so that can see how they helped by making a donation to Make-A-Wish. Please let me know if you have any questions or would like any additional information.

 Again, a HUGE thank you to Libby for being so selfless by helping other children like her receive a wish!

 

I hope you have a wonderful day!

Erin Michel

Vice President of Development

Make-A-Wish^® North Texas

--------------------------------------------

6655 Deseo

Irving, TX 75039

--------------------------------------------

emichel@ntxwish.org

Direct:  214.496.5012

Fax:  214.496.9475

Planning ahead

Yesterday we took a huge step and met with an attorney.  Libby is 17 which means that she will become a legal adult in ten months.  Once a child becomes 18, the parent has no legal right to make medical decisions. Although, the parent is liable for medical costs. 

Complication #1- Libby's case is complicated, of course it is.   When she first became ill, we tried to find her sperm donor to help with medical information and genetic testing.  He has chosen to never see her. He knew of her and proceeded to run. He choose his addiction over a future life with us. At a meeting with Attorney General reps, he admitted she is his and stated that he wanted no part in her life.  Both he and his parents refused to see her when she was an infant.  The weight of shame I carry over this part of my life is immense.   I didn't choose well, but sure got a pretty  child out of it. 

Complication #2- Libby has different parents.  Only one is biological and in the state of Texas that's the part they're concerned with. The second non-bio parent could be a rocket scientist and they still consider the blood lines who have never seen her or this who are disabled more important.   Rachael and I have no paperwork between us.  No power of attorney, no will, and no shared assets.  We will be fixing this during the summer as it is costly and we have Libby's surgery to save for.   

Once she turns 18 doctors can refuse to treat her unless she asks for the treatment herself.  She has speech apraxia and cannot speak all the time.  Not to mention that if she she is stressed or afraid she may choose to not respond and will hum and ignore everyone around  her. 

If we chose to go Guardian route, we would have a long and arduous process ahead. Once the guardianship is granted, we have to go before the Judge every year to prove we are good parents. We have to bring in records of doctor appointments, treatments, medications, social worker testimony and possible info from schools and psychologists.   Yep, proving I am good enough to continue to parent.  As if I've ever been good enough.  

If we go the Power of Attorney route it can be easier. The issue here is that Libby has to be cognitively aware of what she is signing.  This is not always the case and it is more and more hit and miss. (She manifests more often like a Huntington's case, which she is negative for.)  In a day when Libby is in her own world, she may just name Sparkles, her beloved bear, or Bryce, her dog, as her power of attorney.   Scary.  

By beginning this process I have had to admit that she may not be magically okay tomorrow. That I'll wake up and this will all have been a really bad dream. I've had to begin planning based on the kid I have now. I have had to consider her life after today.  I focus everyday on keeping her healthy and happy. And nothing beyond. I haven't been able to even consider life for her after she graduates.   Yuck- my stomach just flopped.  I have to admit that I have to plan for a future which may be drastically limited and/or shortened. 

She had plans for her life and we rejoiced in her future as an archaeologist/veterinarian who is a rock star. Now, when she talks about wanting to be married and have babies, we just smile and love her. Now, when she talks of becoming a wolf rescuer, we just smile and love her. 

Libby, as always, is going to do her own thing and find her own way. My job is to let go of my hopes and allow her future to play out. My job is to keep her healthy, happy and do a little planning.  

I will continue to believe that there is still hope for her to be healthy and independent. And I'm also going to start putting together contingency plans. 

Off we go into new and uncharted waters!  

Today's Truths

Here are a few truths:

We admitted to Dr. Hottie and to ourselves that care of Libby is wearing us out. She is a blessing.

Her Dystonia, Parkinson's and spasticity are progressing quickly. She is a blessing.

She is reaching the limits that meds can't keep her comfortable and still coherent.  (I already plan her pills so that she can be Libby at school as much as possible.). She is a blessing.

She is 17 which means that we have to begin planning for guardianship in the state of Texas.  That'll be fun. She is a blessing. 

Libby has a looser grasp on reality somedays. She is in pain a great deal of the time.  Drugs are a mixed blessing. 

I have to get a hitch and a wheel chair carrier for my Outback to save my back. She is a blessing. 

We are going to have to create a door where we can wheel Libby into the house. She is a blessing.

Some days it really sucks and each breath I take feels like something I don't deserve. She is a blessing.  

I hate it that my body can do so much and she can do less everyday. She is a blessing.

I hate it that I can't shield Mariah from this pain. They are both blessings.

Even if there is only some improvement for awhile, the Deep Brain Stimulators will be worth it.  She is a blessing. 

I know I'm a hot mess and I hate it that Rachael has to live through this with me, but I/we are grateful. She is a blessing as well. 

Our Neuro surgeon suggested we take this leap of faith surgery, since there really aren't any other options. (As if every day isn't a huge leap...) Doctors are blessings. 

He also said this isn't a cure, but it could make her more comfortable.  Comfort is a blessing.

I'm grateful to be home to our puppies and our home.  We are blessed.

These are our current truths, our truths to hide or share.  I hate hiding, sharing is good. 

We dropped  off the donations to Patient Services  at Cook Children's.  As heart breaking as some of our days are, there are other parents who are hurting much worse.   Grateful for all of our blessings, thank you all for your prayers, support and donations to Make a Wish and Cook Children's!  

From all of this we filled two bins...

Libby crammed in with the goods.

Very, very blessed!  Thank you.

Celebrations and Silent Auction

Yesterday was the Celebration of Libby's 17th birthday and fundraiser for Make a Wish and Cook Children's.  We decided during the dark days of the NG tube that we would focus on celebrating and giving back to the places that have made such a huge difference in our lives. 

In the last 12 months we have had Botox, IVIG treatment, two skin biopsies, MRI's, XRays, consults, lots and lots of blood work, two feeding tubes and tons of therapy.  Libby asked to donate her beautiful hair to Locks of Love and she did.  Oh, and we went to the Western Mediterranean for her Wish cruise, which was a special kind of

Blessing.   

There have been some days and nights that were so dark and scary that crawling into a hole and hiding was a viable option in my mind. At least one of the diseases they tested her for is untreatable and fatal, she was negative. We've had side effects and had to change meds mid stream due to huge emotional changes.   I have fallen asleep praying more nights than I can count.

All of this and we've had immense joy.  Just when I feel that giving up is all that is left Libby will giggle or ask for a hug.  It really is an attitude of gratitude.

It is because if the roller coaster we live that we decided that Libby would give back to her friends, family and other sick children. 

We planned the food in December not knowing if Libby would have her feeding tube out or not.  If she got to have pudding, we would all have pudding.  Thus,  a pudding bar! 

Very little pudding and lots of toppings! Yumm! 

Including our sweet princess butt!  This is her serving.  We served brisket, mashed potatoes, salad and yummy rolls. The focus was on the pudding. 

Aunt Judy hanging out with Miss Libby. Special hugs for Judy and my aunt Beverly for their donations. And for the amazing Mariah who I admire and love more everyday. 

These girls have been Libby's friends since we arrived in Happy.  Micah, Beth and Rachel have been and are a great blessing in Libby's life! 

On the left are part of the donations and on the right are Libby's gifts.  I am proud to say that she was happy with her gifts and excited about all the donations.

The beautiful Cassie Foster  painting that we auctioned off for Make a Wish.  The winning bid was from our amazing friends, Kim and Jeff Davis.  They gave the painting to Libby and it is already in her bedroom!  Their winning bid and other donations for Make a Wish totaled over $400!  All will be given to Make a Wish under Libby's name to try to give back for her amazing trip!  

The amount of items people brought for Cook Children's patient services is also overwhelming!   

If one kid smiles because of these donations then we will consider our efforts successful.  We are truly blessed beyond measure!   (We will deliver all these at our next appointment, so we can still take more items!) All donations together I'd estimate several more hundred dollars for Cook Children's. 

Today we will do very little as yesterday wore Miss Princess and myself out!  

This was Libby last night after the party.  Thank you to everyone who came to share in our celebration.  Although there have been some dark moments, there is always joy.   Gratitude. 

 Here is the list of items Cook Children's has on their wish list. 

http://www.cookchildrens.org/SiteCollectionDocuments/giving/ChildLifeWishList.pdf

The local chapter of Make a Wish will

be getting our donation as soon as we can arrange it! 

Wish.org

Adventures

Just over 17 years ago I made a choice to have a second child. I had had such difficulty with Mariah that the doctors believed that I would not conceive much less carry another child.  Liberty was a big surprise. 

After I found out I was pregnant and learned this would be a solo job I left my good State job, my friends and family and moved away. I wrote letters to my mom, both grandmothers and my aunts telling them that I was having another child. I also apologized if my single parenthood added any shame or disrespect to their lives.  I wanted all to know that even though life was going to be very difficult, I did have a plan to kick the worlds' butt.  This plan involved finishing college, among other things.  

I had several offers from family and a friend to adopt Libby before and after she was born.  I wanted her so badly and desperately wanted to see who she would become. 

Libby changed my life and continues to wreck and bless  my world and many others. 

I will no longer wonder what she would be like if she had not become ill that only brings guilt and sadness. Instead, I am focussing on the kid she is.  She is 17 and every day matters to us. 

She took us for a walk to the post office this afternoon and was pretty darn cute!  (We had to promise her a long nap to get her out of the house...). 

 Without her feeding tube she is a happy girl at meal time!  She's really doing well and has only had a few instances of rough swallows with water. Getting enough water in her remains difficult.  We will not be getting Botox in the sternocleidomastoids in the future.  Thank you, but no. 

17 years ago I stepped on to a road and I had no idea where it would lead us- I still don't know. I just know that I'm glad that both my daughters chose me to take their adventure with them.