Sunday, July 28, 2013


I usually don't post personal things...Just too personal! But I decided this needed telling.

This is Michael...or Mikey...or Mike...or sometimes, Scooby! LOL  He is our eldest child.
 I will try to keep it as short as possible, mostly because I can't talk about Mikey without crying.
It has been a true challenge for almost all of his life...Shortly after his second birthday, Michael was stricken with a rare, and at that time, usually fatal illness...Reyes Syndrome.  After several near losses, God saw fit to allow us to keep Michael with us, no matter what challenges might be ahead for our family.  And there were many, many of those!
Obstacles were many, year after year, but eventually, he relearned how to eat, drink, walk, talk, laugh, and all the things we took for granted before.  He even managed to graduate, get a job, move out into his own apartment and with his determination and help from us, his sister, and friends, Michael lived a fairly full and healthy life for almost thirteen years.
About five years ago, he started having problems with spasms/jerking...sort of like Parkinson's symptoms, but not Parkinsons.  We helped him move up here to the mountains and into an apartment, while we sought answers to this new health issue. After many tests, many visits to doctors, and many, many tears, we found a neuro surgeon who suggested trying a Baclofen pump...this pump would carry meds through a catheter to the spine and directly to the nerves causing the symptoms (now referred to as dystonia or "movement disorder")
Michael enjoyed about three years of relief, but last year, he started having problems with the pump.  Since then, he has had several revisions of the catheter, and all these surgeries have taken a toll. The most recent surgery was about five weeks ago, and recovery has been slow and filled with other problems. 
Now days, he seems tired...weary...almost sad.  But, he is not sad.  He meets each day with a good attitude and each time we are needed to help with some issue, we are filled with joy when faced with his smile and laughter...He's a real joker and if we get down, he picks us up. 
Believe it or not, Michael lives in his own apartment, and with the help of two awesome CNAs who visit for a few hours each day, he lives a relatively independent life. He can no longer walk, but has adapted to a wonderful power chair and is able to function pretty well.  He is truly an inspiration!
I'm not sure why I am sharing this, but I hope people will gain some insight into what your friends, family or neighbors might be dealing with each day.  Not that you actually have to do something personal for anyone, but be aware of people...of their feelings...of their struggles...of their sadness...
Pray for them, think of them, be considerate of them...And GIVE THANKS each day for your many Blessings!
We have been Blessed with a wonderful son and no matter what challenges may face us, together, we will move forward...We will be uplifted by God, our friends, our helpers...
P. S. I also think I am sharing this to explain why Giles and I have been quiet, as of late.  We have decided to semi-retire from doing shows...at least for now...we just do not feel good about going far away from home.  We will be taking a space in the local antique mall...Giles will still be creating, and I will continue to do what I do...LOL 
We ask for prayers...they do make a difference.  We hope you will think of us and miss us at the shows, and maybe soon, we will return to some venues... If there is anything we have had in the past that you need or want, contact us and we'll do our best to "get er done"! 
We have no regrets or hesitations about making Michael our first priority... He is the one who "lives" this difficult life and we certainly must help him all that we can... Blessings to all!


13 comments:

Farmhouse prims said...

Praying for Mikey and your family. My daughter struggles with an illness and as a parent I understand your heartache. My thoughts and prayers are with you all for strength and healing. Bunches of hugs, Lecia

Jen said...

And there he is, with his smirky smile, you would never know all that hes been through.
Prayers for you, Giles and Michael.
We love you guys!

Sandi @ The Primitive Skate said...

My thoughts and Prayers are with your son and your family.
Take Care!

Primitive Stars said...

Hi Barbara, what a sweet smile, prayers to you and the family, Hugs Francine.

Saltbox Farm said...

and what a blessing your Mikey truly is Barb & Giles! And how blessed he is to have such a loving family to wrap their arms around him as he makes his way through the hand he's been dealt. Enjoy each and every moment you can with that wonderful young man. Prayers and often thoughts from here.
BrunieMae

Saltbox Farm said...
This comment has been removed by the author.
bettyj said...

Oh my goodness. What strength of character and of family. Prayers coming from Tn

Holly Hills Primitives said...

God bless you! Dawn

Tammy said...

Barbara,
Just wanted to let you know that you,Giles and Michael will be in my thoughts and prayers.I hope to get to come see your new booth at the antique mall and hopefully we can get together for lunch,I would love that,I miss coming to see you!
Tammy

Pam and Glen said...

Our thoughts and prayers are with you, Giles and your family. Wondered why we hadnt seen you around lately. Let us know if we can do anything!! Please!! Love,Pam & Glen

Pam and Glen said...

Our thoughts and prayers are with you, Giles and your family. Wondered why we hadnt seen you around lately. Let us know if we can do anything!! Please!! Love,Pam & Glen

June said...

This is such a blessing for me to read tonight. I hadn't every been to your blog before but clicked on one of your images on Pinterest and it took me straight to this post.I love meeting Mikey. His smile is much like my own 27 yr old son Landon who has a rare syndrome. He is the biggest joy in my life. I so enjoyed reading about your own joy in yours. I hope Mikey starts feeling better. It is so hard for us as mothers to see them ill.

Unknown said...

Updating my new computer and moving favorite places. Don't know why I opened your page today, guess God had a reason. Read your blog about Michael. You are all in my prayers. I know it hasn't been easy, and you are right, we never know what anyone else is dealing with. Praying things go well and he is able to continue to be on his own. I remember how important that was to him. Love you. xoxo Liz