Saturday, August 22, 2009

Run, Run, Run

Wayne and I took the twins on a little family adventure today to a local farm. We had a nice time showing Ella the animals and imitating their noises. The rooster was especially chatty. William slept most of the time in his adapted jogging stroller which made for a smooth ride over the fields and mud. The farm is run by a local agency that operates group homes for adults with disabilities so it was completely handicap accessible with nice ramps and some paved paths. This is where I need to stop and vent. While we were strolling along one of those smooth paths I couldn't help but to overhear a mother (because she was shouting) for her girls to "stop running and walk." "Walk, walk, walk," she shouted over and over again. It is really not that uncommon for adults to be telling children to walk yet it really struck a nerve today. I literally stopped pushing William's stroller and watched the woman's three beautiful daughters laughing and running as children should be. What was the worst that would happen if the girls fell? A scrapped knee? A bloody lip?

So there we were on a beautiful day enjoying time together and the pain strikes fresh and new once again. Will my son ever be able to walk let alone run? I can hope.

I began to push my stroller again and looked ahead on the path to where my daughter was running and laughing at the sheep. She looked so beautiful and carefree in the bright sunlight. I will not be the one to tell her to stop running.

"Run, Run, Run," I say, " If they can let them Run!!!!"

Tuesday, August 11, 2009

Tough Decisions

In my community is the only state certified child care home for medically fragile children! All of William's terrific therapists go there to work with children. A few months back the Occupational therapist, whom I trust and respect, handed me a information folder and application. I told her I was not looking to have care outside the home and put the folder on my crowded bookshelf.  I trusted her judgment that is was a wonderful place but was just not ready yet.
Recently a friend of mine called to tell me of her wonderful experience leaving her son there one day a week so she can work and spend time with her older daughter.  She encouraged me to visit and I did not; I told her I was fine and I had the help of my mother.  
This month my mom has been working everyday and I have been without help more often.  My mom is terrific and she comes to help when I ask and schedule it with her in advance. So I began to think that it would be nice having more help and not having to relay solely on my mom. I called Daystar and scheduled  a visit. It was not at all what I had imagined or expected. The house was on a cozy little street in a quite neighborhood.  Inside the house was beautifully decorated and completely kid friendly. I was given a tour and met many friendly women who seemed very devoted to the children they serve. Many were certified nurses.  It was truly a unique place that I want to be part of.  Now the question is can I leave William there for one day a week without judging myself harshly? Usually the home has a waiting list but I was told that many children were graduating and I could pick any day of the week! I would love to have time to get errands done and time alone with Ella.  It would be wonderful for Ella to have mommy time but I am not sure if I can leave William for an entire day in someone else's care besides my moms? Now I have some tough decisions to make!!!

Wednesday, August 5, 2009

A wonderful summer moment

I have been trying to get William to enjoy the water and this little whale pool is just right for him. With his limited vision he likes to feel snug and secure so this tiny pool helps to cool him off without upsetting him. The only catch is that Ella also loves the whale pool and tries to climb in with him which makes for a pool crammed full of cute naked babies!!! Wayne snapped this picture during one of those perfect summer moments of sun and relaxation. Ella was trying to splash William and I and I was caught up in laughter! Laughter and sunshine.......those are two things I could use more of in my life.

Monday, August 3, 2009

celebrating two years!!!

My Twins turn 2

Today my twins turned two! We had a nice party for them yesterday with friends and family. The weather was beautiful and the children enjoyed playing in splash pools. We had the party at my mothers house which is more spacious than mine and is surrounded by absolutely beautiful gardens. My husband made all the food which was wonderful.  Ella, William and their friends seemed to have a great time at the party.  I feel that celebrating each year I have with my children is so important. Given William's diagnosis and that life is unpredictable I intend to make birthdays a big celebration each year.  It really meant a lot to me that so many family members and friends celebrated with us this year!!