Sunday, April 21, 2013

"I'M A COWBOY!!!!"

We are on our way home from a long weekend in Illinois. Maria got to attend Ebertfest, Roger Ebert's film festival. Adrienne was our wonderful hostess. She and my sister watched Gus while I worked. All of us went to see the movie, Bernie, on Thursday night, and tried to get home only to find that Adrienne now owned island property and we couldn't drive back to the house to Gus and the babysitter. What an exciting adventure. We were able to hike and wade in to the house and escort the babysitter back out to where our cars were and take her home. We highly recommend seeing "Bernie" and strongly recommend avoiding flood  zones!

It was such a gorgeous day today that we wanted to take a little walk before our long drive home. We came across a place that did horseback rides so we thought we'd see how Gus felt about horses because we've heard so much about how wonderful riding is for kids with CP. It really opens their hips. They asked if we wanted to do a pony ride and we said, "Well, yes, but can we? And are you equipped to do it safely?" The pictures tell the rest of the story.

This was such a sweet horse. We spent lots of time petting him.

Here's Danny, Gus's mount

Check out those cheeks - they are puffed out in a wide grin!

They told him to hang onto the pommel of the saddle and instead he took the reins like a pro. He said to the lady he rode with, "I'm a cowboy!" I see boots in our future.

Monday, April 15, 2013

Some joy and laughter on a gloomy day

Our hearts have been heavy for another set of special needs parents who just lost their 5 1/2 yr old son last night. The thought of losing our child strikes a chord of fear horribly deep and our thoughts and prayers go out to PA to this family. Their blog is here,

Then to hear the news about the Boston Marathon today is just awful, too. And, I learned that the 26th mile was dedicated to Sandy Hook Elementary and that some of the families went to Boston to cheer people on during that last mile. I really hope none of them were directly affected by today's events. They have been through so much already.

So, I thought I'd upload a video of our boy being goofy and eating up seeing himself on camera. He loves to end his days snuggled right in between us on the coach talking, tickling, reading books, and getting his double loving. Which is right where I want to have spent the entire day so I'm looking forward to our evening together holding each other tightly!

Love and hug all of your special people, too!

Sunday, March 31, 2013

Happy Easter Bunny

Gus's words and wishes today, "Happy Easter Bunny!"

Several of Gus's favorite things - Mickey Mouse, M&M's, and a train

Thursday, March 28, 2013

Easter Bunny through the years

I can't help but go back and look at these year over year pics. He was still a baby this time last year and now he's such a big man!

Happy Easter to you and yours!

Monday, March 25, 2013

Thursday, March 14, 2013

Blessings and despair

I guess it was sometime around Fall of 2011 on one of Maria and Gus's many trips to Fort Wayne, IN, for ABM that Maria came down horribly sick to the point where she was stuck with Gus at the RV campground up there and unable to drive the 4 hours home. It was a Friday morning when she called me as I was here at home working. So, I called my boss who, as usual, offered the same, "Yes, of course! Go take care of your family and let me know what I can do to cover for you." There were several things on my work plate that day that couldn't wait so I transitioned them off to my wonderful and willing team members. Then I started calling around to friends and family to see if there was anyone who could possibly drive up with me and bring our other vehicle back to the city so it wasn't stranded up there. While I didn't locate anyone, at least 2 of them generously offered solutions for getting the truck home on future dates. Then I started trying to figure out what to do with our then infant son while I took Maria to the Emergency Department once we arrived back home that evening. My sister suggested I call her friend who doesn't work on Fridays and they agreed to take Gus on his first night away since the NICU away from his mamas. Once I got up to the campground I located the owner to let him know about the truck and take care of some business. We had gotten to know  him through so many trips up there so I told him what was happening. He knew about Gus and his cerebral palsy but he didn't know that Maria also has such serious health issues and he just shook his head and gave me this pitying look saying, "Wow, that must all be horribly hard on you to go through so much with both Gus and Maria." I laughed and said, "Are you kidding me? It's a reminder to me on days like this how tremendously blessed and rich we are!" I went on to tell him how many people had jumped in just in a matter of hours that day alone to help us out. To borrow from another friend's mantra on her blog - We have an embarrassment of riches! I can't even list in a single blog post all of the ways we are blessed by friends, family, my work family, and yes, even strangers.

And so, we have yet another huge recent blessing in the form of a family who generously offered us some equipment that their daughter had used. Their daughter passed last year in January just shy of her 13th birthday and I can't even imagine the grief. We will think of their daughter often as we put her things to use to help Gus. They gifted us an amazing bath/shower chair system, a pediatric wheelchair, and a gait trainer.

Here is Gus enjoying the shower chair after a swim at the YMCA last night. I can't tell you how amazing it was to be able to wheel him from the car to the pool side to the shower and back to the car again all in this chair! Plus, I was able to dry, diaper and dress him in it, too. It not only saves me from a lot of carrying him but it's also at an awesome height for pushing and bathing him. Now, without the worry and dread of the back aches, I am going to make Wednesday night our swimming night!

This thing will even slide over to a base you put in the bathtub so there's no lifting in and out of the tub! You can see the full product here,

So it is that blessings are born out of despair. We have received so many blessings from Gus's early entry into this world and resulting struggles and now we are blessed to receive these gifts and to think of Kayla, honor her memory, and send our gratitude to her family. Her family is holding the following celebration and fundraiser on what would have been Kayla's 14th birthday. We will be there for at least the beginning of it if any of you would like to join us.

I read several other blogs by parents of kids with special needs and I when I log in to write my own blogs, I see theirs listed and always take a moment to peruse any I missed along the way. One mother's recent entry was all full of her despair over the tragedy that caused her son's brain damage at birth. I quickly moved on from that one mostly because I prefer to focus on the good that we have when I can. I have those awful moments myself but I don't want to spend my time and energy there. Then I saw another mom's blog that has much the same theme of mine today and expressed some of my feelings even better than I can. The truth for me in her blog is so much so that it's like she looked into my heart and put the emotions there eloquently onto her pages. Like her, I worry all the time if I'm using the resources and gifts we have so generously been given aptly enough. Please check it out, The Paradox of Overwhelming Blessings in the Wake of Tragedy.

Now, for some general cuteness:

I've been trying to get Gus on video singing the Thomas & Friends theme song with me. I finally captured it but it was in a dark car so you only get the audio from the above.

With Aunt Adrienne, a Godmama, at a Minnie Mouse birthday party

Enjoying the tractor at Young's Jersey Dairy on a chilly day

Riding Thomas the Train!

Who's that big kid riding with Gus? 

Gus's new rule - everything for eating must be dipped first!

Silly monster. One of his first, "Mommy - Look!" moments!

 Perhaps it's no coincidence that I have been literally making lemonade from lemons lately. Art imitating life? Honor your blessings and despair!