Today is May 30, 2012. The end of May..and its already hit 90 degrees.. Daniel's air conditioner in his little room keeps him cool and comfortable and breathing well. (while the rest of us sweat to death)
So many things to be grateful for... I have to mention the luncheon we were invited to on April 29, in New York. Carl Banks was the guest of the luncheon, and he signed autographs and t shirts. A friend of mine, Marc Pintel has a non profit called Pintel for the Homeless, and he invited several local charities to attend, but also included Daniel and our family. We were very honored, and it was a very nice day. Marc presented us with a check towards Daniel's medical expenses and treatments. It was very special to have someone reach out so unconditionally to help us. And it was very cool to meet Carl Banks too!!
And then, in early May I was invited to the Mother's Day luncheon of the Molly Tango Foundation. What a wonderful annual event they have to raise money for the foundation which helps disabled children and their families. Currently, they have helped us with expenses related to the maintenance on Daniel's van..new tires, lift maintenance and badly needed lift repairs!! The Molly Ann Tango Memorial Foundation continues to grow in its giving throughout the Ridegfield/Danbury/Newtown/Bethel ish... area.. So amazing... these people....
And here it is... as I sit...and think. The end of May. What is going on??? Well...
Daniel continues to have intense supplementation of calcium and phosphorus and will have tests done in about two weeks to see if there is an improvement in his bone strength.
He has been gaining weight, up about 5 pounds... but at the same time his Wheelchair is getting too small, his braces are getting too small, his CLOTHES are getting too small. This is a blessing and a financial curse.
Daniel is swimming again, thanks to a scholarship at the Brookfield YMCA which allows him to have a membership for swimming in the therapy pool. We have a dream of being able to have our own therapy pool.....but of course that is just a dream.... but he loves to go and swim.
Summer is just around the corner...and my brain is full of a million issues to resolve and things to do for my children. But with Daniel the management is at a greater level... equipment, therapy, school, medications, appointments, supplies, and it cycles... His scoliosis is worsening... the curve is very evident when you look at him. We just pray that Yale Endocrinology can help us get him stronger....because surgery is inevitable.
Out of the rumble and chaos that goes in my mind daily, as I try so hard to keep things going and keep things taken care of... comes a grateful heart for the people in my life who continue to help us with Daniel... teachers, therapists, nurses, friends....... so many people just adore this boy who calls me Mom.
He needs so much....and he asks for absolutely nothing, except a smile.
Praising God for the goodness in my life and that his blessings will continue to pour out upon our family.
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.
Wednesday, May 30, 2012
Monday, May 14, 2012
Happy Mother's Day 2012
I had a very nice Mother's Day. The family made me breakfast, and showered me with pampering gifts. Even Daniel made homemade Lavender Body Scrub at school for his Mommy. I spend so much time engrossed in thought. Thought about Sarah and her future and all of the things she needs me to do. Thoughts about Thomas and his activities and how to best enhance his young 11 year old world. But Daniel is on another level all together.
Daniel requires around the clock attention. And now, he is under close supervision of doctors because his bones have been found to be demineralized and they are treating him with calcium and phosphorus to strengthen his bones.
His spinal fusion surgery needs to be done. But can't be done...until Fall... which means a summer of trying to make this very curved boy comfortable.
I'm budgeting, managing, cleaning, calling, emailing, reading, organizing, and DRIVING places all week long. My health is suffering too right now....but I find that I can't pull myself out of the depression long enough to motivate myself to care about myself. There are simply too many people who rely on me.
Which makes it a form of irony....because if I don't take care of me...who will?? My Mother's Day gift to myself is to try...to really try... to focus on becoming healthier. Despite the criticism, skepticism, and calculated pain... I have to look the other way and realized that I am important. That I matter to my children....and it's time to teach them how to care. By caring for myself.
What a concept. Most Mother's of disabled kids can probably relate to my world...to my loneliness, to my feelings of being a person who has lost themselves completely.
Its not so easy to find yourself again when the negative world stomps on your dreams. But it is possible to take baby steps towards the direction of your dreams...while still being the best Mom you can be to your children.
Even taking the five minutes to blog today.... made me feel like I've patted myself on the back.
Now ....back to the hardcore reality which is Daniel's medical issues!
I hope all the Mom's that read this post....had a Happy Mother's Day!!! There is no greater gift than to be a Mom.
Julie
5/14/12
Daniel requires around the clock attention. And now, he is under close supervision of doctors because his bones have been found to be demineralized and they are treating him with calcium and phosphorus to strengthen his bones.
His spinal fusion surgery needs to be done. But can't be done...until Fall... which means a summer of trying to make this very curved boy comfortable.
I'm budgeting, managing, cleaning, calling, emailing, reading, organizing, and DRIVING places all week long. My health is suffering too right now....but I find that I can't pull myself out of the depression long enough to motivate myself to care about myself. There are simply too many people who rely on me.
Which makes it a form of irony....because if I don't take care of me...who will?? My Mother's Day gift to myself is to try...to really try... to focus on becoming healthier. Despite the criticism, skepticism, and calculated pain... I have to look the other way and realized that I am important. That I matter to my children....and it's time to teach them how to care. By caring for myself.
What a concept. Most Mother's of disabled kids can probably relate to my world...to my loneliness, to my feelings of being a person who has lost themselves completely.
Its not so easy to find yourself again when the negative world stomps on your dreams. But it is possible to take baby steps towards the direction of your dreams...while still being the best Mom you can be to your children.
Even taking the five minutes to blog today.... made me feel like I've patted myself on the back.
Now ....back to the hardcore reality which is Daniel's medical issues!
I hope all the Mom's that read this post....had a Happy Mother's Day!!! There is no greater gift than to be a Mom.
Julie
5/14/12
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