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

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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.