Monitors: the good, the bad, and the icky

Baby monitors are a mixture of good and evil.  Good is that I can hear when Libby is really upset.

Bad is that she knows we come running- even if it is because her arm is cold, or she misses the cat that died 13 years ago, or I wasn't home earlier and she just missed me so something hurts.   The trick with our kid seems to be figuring out what she really needs versus what she's summoning us for.

This is true with all of us.  We use various systems to monitor each other and to reach out.  Phones, emails, Facebook, blogs, Instagram, Twitter and the antiquated letter. Whether we realize it or not, it is human instinct to reach out when something is amiss, even if we don't know what that dis-ordered ick is.  So many of us are walking around and if we had a baby monitor attached we'd be beeping like crazy.  

Some eat. Some shop. Some give every minute to others to avoid their ick. Some work out. I create. 

School let out last Friday. Beep. On Friday I learned of my new teaching position. Beep. I began teaching Summer school Monday.   Beep. Many people are joining us in Ft. Worth to support us for the surgery. Beep. Money. Beep. 

I have been in a manic phase for the last month of school because I knew that I had to get my world in order before Libby's DBS implantation surgery. There is little in the house or classroom that I haven't organized, cleaned out, and/or painted.   

Rachael, ever patient with me, asked yesterday if I was about done.  Yes.   Almost.  I don't share the list in my mind since no one needs to know that I'm on contingency plan q for after Libby's surgery. Beep. Beep.

Want to know what my state of the union is? Ask how much I've been painting. Writing. It's like nesting only a middle aged version of it.  

So monitors are good and bad.   I need to learn to pay attention to mine.  We all need to know our "beeps" and learn our ick coping strategies.   

Share your beeps. Reach out. Reach in. Don't self destruct, that's easier than dealing most times.  

(I am at peace with the DBS, it is not knowing what level we'll be leaving the hospital with that causes planning ahead.) 

Blessings.  

Funds and feelings

The Happy Girl Scouts held an amazing fundraiser for us last weekend. There was a silent auction which included two Kenneth Wyatt paintings, Glen Dougherty brought in an antique toy tractor, and many other amazing donations.  There was a baked potato bar and donations were accepted. The money will go into a separate account to help us with the lengthy stay we are facing around Libby's surgery. We are humbled and grateful beyond belief. Many thanks to all who helped prepare this event and to those who donated.

We report June 26th for paperwork, brain implants go in on the 27th. Libby should be released on the 28th. We are to return on July 1st and the battery packs go in on July 2nd. She should be re-released in July 3rd.  I will not be driving her almost 300 miles home in between the hospital stays. We will be in a hotel room resting and healing.   I am just not okay with being so far away from her docs between surgeries.  I want to be within a mile or two of the hospital. 

Libby has agreed to this surgery with the condition that her sister and her cousins be there.  We will do everything we can to make sure that Mariah, Jasmin and Xavier are all there.  (The rest of us are chump change apparently.)   

I cannot stay in the Ronald McDonald house for many reasons. First and foremost I just can't.  I become so overwhelmed by the pain and fears for their children that I forget to care for my own.  Early into this journey, during hospital stays I would not be able to eat or deal with my own fears for my own child because so many others are so much worse off than our Libby. 

I need to be able to focus on her and our loved ones.  This trip especially, I'm going to need to cry, eat, sleep, pray, cry, and even drink privately.  The dam that has held my emotions at bat for so long cracked a few weeks ago.  After sobbing uncontrollably at school while on the phone scheduling this surgery, I have cried quite a bit.   Okay, a lot. 

I wish that my mother and Grandmother could be there, but I am not sure how that could happen. Grandmother is 97 and though amazing she is frail and doesn't travel. My mother isn't mentally or physically stable enough.   

When Libby is in the hospital Rachael and I sleep in her room. When she is out we generally stay in the motel that is as close as we can get to the hospital and is affordable.  One day we may need to take advantage of the amazing Ronald McDonald houses, but not yet.  

We have not asked for any monetary help but are very grateful for every one's support. Whatever form that support comes in. 

Planting is some m&m's to see what the Easter bunny will

Bring.... Happy Hopping and feel

As blessed as you are. 

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

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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.