I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
This little dog is pretty incredible. Everywhere I go, someone always asks me "what kind of dog is that?" and I say Coton, or Coton de Tulear. And they go "huh? never heard of that". The breed is amazing. Its a somewhat rare breed in the United States, not AKC registered and do not wish to be. They are known for being soft as Cotton. Usually they are white, but sometimes come in other colors such as Henry.
His temperament is very friendly, submissive, and he wants to please. He learns very quickly and he is intuitively aware of the physiological state of his person. We are training him, and someday he will be an official service dog.
He is very very sweet, and sometimes quite spunky...but his intelligence blows my mind.
For now, he is simply growing up and being trained. He is spending time in many places, and with many people and we will work up to more independent time with Daniel.
I never understood why people loved their dogs so much, until I had one. And he is a love.
How did we get this rare little pooch? Well, it's kind of a long story, but the short of it is that a very kind hearted woman in Ohio learned that we were seeking a dog for Daniel that would be a good comfort dog/service dog,.. next thing I know she has donated a pup to Daniel.
On July 23, Thomas and I drove out to Philadelphia and met Henry at the airport
Life has been full of blessings ever since. So next time you hear "Coton De Tulear" you will know what it is...
It's a BEAUTIFUL day here in Sandy Hook, CT . Seriously, the sun is shining and its supposed to be summer time warm today. Hard to believe that June is around the corner. May has been a whirlwind of concerts, plays, events, stressful things, sickness, broken washing machine, more concerts, Sarah getting her license, and more. Daniel, in his quiet life, watches it all smiling from his wheelchair.
I am so very proud of my children. Sarah has just excelled over the years and followed her heart. Now she is getting ready to go off to college in August. Unreal in so many ways. Thomas is my little sweet big guy. Taught himself how to play Trombone this month. And can't wait for football. I have to find something to do for the summer.
I still have not been able to get Daniel anywhere that he could swim, although I know how much he would love that!!
Fun with paint at school!!
Water time!!
He's been sick with an upper respiratory infection that created alot of congestion. Off to the ER we went on Monday and the x ray did not show pneumonia!!! Thank you GOD. But he's pretty sick, even today not looking too well. But his resilience never ceases to amaze me. I honestly never know what to expect with this kid.
I am sitting here in my office writing. My office that is also my bedroom because John exiles me in the middle of the night due to my snoring. I have to remember to call the ENT to look at my sinuses. I never have time for me. Anyhow, just sitting here thinking about how many things kids are doing in the Spring, whether its sports, theatre, dance, or whatever. Graduations every where. Proms, and weddings and life changing events for families all around.
And then, there is my Daniel. He is my buddy. I adore spending time with him, and it is nice that he clearly likes his one on one time with Mom. I just wish for once, there was some special event. Some special exciting new thing for Daniel. So I have been praying that somehow we can figure out how to get a dog for Daniel. I can't afford to buy a puppy these. days. But a friend of mine is helping me reach out on Daniel's behalf to possibly acquire a dog for him. That would be a big event!!
All I can say is, please be grateful for the gifts that your children have. Don't be sad that they are growing up and becoming independent. It's what is natural and part of life's process. Moving on and carrying forward to the next moments of life. Time doesn't ever stop. I have to remind myself to be grateful for the positive and wonderful family that I have. Well, children anyhow. But even with our dysfunction somehow they manage to be smart, resourceful, talented, and loving kids.
It's May 30th. The sounds of birds and lawn mowers. And in here, the sounds of nebulizer, vest treatments, oxygen machine humming and feeding pump whirring and beeping. I don't like congestion. Too many scary variables there.
Enough for now. Praying for Daniel to get a dog somehow. Praying for our family and that financially things will get better. Praying that I will finally pass my P and C exam. Praying that God will touch our hearts and heal the things that harden our hearts. I am grateful. Very grateful.
Peace out from Julie, Mom to Daniel, (bi-lateral diffuse Polymicrogyria secondary to CMV infection in utero. Non verbal, feeding tube fed, wheelchair, seizures, respiratory problems, othopedic problems, severe gastrointestinal reflux.)
