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!
Very, very blessed! Thank you.
my son's girlfriend of 2 years now has a progressive disease filled with pain, and while her disability is milder than Libby's and she's twice as old, just watching her deteriorate during the time i've known her is painful, and seeing my son struggle to sustain the household chores and tend the pets in addition to establishing himself professionally is both awe-inspiring and heartbreaking. and these are second-hand feelings, since i'm truly not part of their daily lives (altho' i spent today with them.) it gave me a mild taste of what you and Rachel live with -- what an eye-opener, even tho' i've seen you cope on a relatively good day, it's just relentless. sending you love and hugs and comforting thoughts, and hoping this Deep Brain Stimulation gives you better benefits for longer than the docs promised!
ReplyDeletelynn
Lynn, I am so sorry for your son's girlfriend. Everyday we make a choice to keep going. Thank you for your ongoing support.
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