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, http://www.kateleong.com/2013/04/gavin-david-leong.html#.UWybfKKG2Sp
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!
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, http://www.columbiamedical.com/special-needs-disabilities-products-details.asp?ProductID=80
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!
This boy of ours is just blossoming, especially with his speech. He has definitely figured out how to get what he wants from us! He's full of requests lately such as:
"I want to go wake up Mama!"
"WAKE UP!"
"Mickey Mouse OT" (Translation - Mickey Mouse Clubhouse on the TV)
"Open It"
"I want go for a walk"
"I go to Grandma's"
"Come here"
"Come back"
"Wait"
"I want to go home" (This one breaks my heart a little as I only wish we didn't have to travel so much to get him all of his therapy.)
"I go down and play"
"I want UP!"
Tonight we had him all ready for bed and he was lying on the floor playing when he said, "I go to bed now"
Me: "Okay, let's go"
Gus: "Rock!"
"Oh, you want to rock? Ok, let's go. Shall we sing, too?"
"Yes!"
We sing Twinkle Twinkle Little Star, to which he knows most of the words and sings along. When that's done,
"Choo!"
We sing Thomas & Friends theme song
"What shall we sing next?"
"Um...Mickey Mouse!"
After Mickey Mouse Clubhouse
"How 'bou' Pooh?" (This touches my heart in so many ways. It's me who like Pooh and that's exactly how I usually ask him about what's next - How about Winnie the Pooh?)
So we sing Winnie the Pooh. Before I can ask him if he'd like to do Caillou next, he says,
"I go to bed now"
"Night night, baby, I love you"
"Bye Mama"
Did this little baby really just turn 2 years old and already is carrying on conversations and doing nightly sing-a-longs?
We had brunch with some dear friends on Sunday, one of whom helped us out to the car while commenting to Maria, "You sure are lucky to have such a wonderful little boy."
Gus chimes in, saying to Maria, "You're LUCKY, Mama!"
So, after some serious deliberation and frequent late night studying of the pros and cons, we decided to let the OT and PT at preschool put Gus in a gait trainer. (The KidWalk gait trainer for those of you who care.) A week ago today Maria was out of the room in a parents' conference when they put him in it for the first time. They were just going to use it as a stander that day so he could stand up by another student and play at the computer together. As soon as he got in it, he said, "I walk, I walk, I walk." So, they turned him away from the computer, unlocked the wheels, and he started taking steps right away! We haven't seen hardly any reciprocal movement in his legs - where he does one thing with one leg and then does it with the other. He mostly moves either his right leg only or both legs at the same time so everyone was shocked that he actually took steps with one leg and then the other and so on! Someone had to run and find him a pair of shoes so he could get some traction.
He looks like a pro already in his first few minutes!
Today at preschool he tried it again so I popped in from work for that part so as not to miss it!
I am long overdue to do a blog entry for his second birthday. We've all been varying degrees of sick again, including Maria down with bronchitis but she's finally recovering, and there are a bunch of pictures I want to get in for that one so I'll catch that up one of these days.
