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

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!

Happy Snow Day!

Gus makes his first snowman and throws his first snowballs!

Happy Saint Patrick's Day from Little Lord Fergus!

 

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, 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!

An Empowered Kid is a Demanding Kid! Oh, and taking STEPS!

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.

Judgement and Asking for what we want

Well, it happened - that thing that I've been dreading and wondering how I would react. The good news is that no one was murdered or even injured, despite my instincts. We started a swim class at the YMCA on Saturday morning for 18-30 month olds. Most of the time I'd say that you can't just look at Gus and know that he is special needs but when he gets excited he does go all spastic and kind of wave his hands around in a jerky way and make this noise that I guess isn't quite typical. I'd never really thought about it before. But he got that way as they were handing toys out towards the end of the swim class and one of the other moms gawked at Gus. Not one of those, "Hmm, that seems different" observation sort of looks but a, "Oh my gosh! What is that boy doing and gosh I'm glad MY son doesn't do that!" rude way. Seriously, I think I have a tendency to err on the side of thinking the best about people and their actions but this was overboard obvious even to me that is was just mean-spirited. Instead of punching her in the face, which was my initial instinct, I just turned myself and Gus away from her and waited for the teacher to get to us with the toys. But it has bothered me so much ever since and kind of consumed my thought processes the rest of the weekend.

1) I was having a hard time at class anyway because the very first activity was to have the kids stand on the side of the pool and jump into the parents' arms. And things didn't get much better from there. Gus had a great time but I really struggled with trying to do what the class was doing.

2) If I hadn't been having a hard time and having to put all of my effort into NOT punching her in the face, it might have been a great moment to do some education or something with her so I've been trying to think what else I could have done that might have been constructive but so far I'm coming up empty and just keep thinking this is how bullying starts - with parents like this modeling judgmental behavior that gives their kids permission to look down upon others and treat different kids as a "less than". But that makes me even more wish I knew what the answer was to help break that pattern NOW while this lady only has a 2 year old. What would YOU have done?

3) If Gus wasn't having a hard time and didn't notice the lady staring at him, then why am I obsessing over it? Isn't it just my problem then and I should let it go - focus my energies on things that my son does need?

I don't know. I'm still working through some conflicting thoughts and emotions over this. It's a hard time of year for me anyway thinking back to 2 years ago and wishing I could change the outcome for my boy. Yes, logically I know that there's no use in doing that to myself and yes, we have a lovely child and I wouldn't trade him for anything. I just wish I'd have given him a safer place to grow and develop and I can't help but wonder "what if" on so many things that I did that maybe if I hadn't done them it wouldn't have turned out like this. Most of the time, I really do believe that things are just as they are meant to be and that God is with us. It's just plain hard sometimes so please forgive me for the self-berating and self-pity cycle that is me in early January. It's better this year than it was last year and I'm sure it will continue to get better with time.

On a lighter note, Gus and I get to celebrate our birthdays together this week. We have way too many presents for him but we're just so excited to see him enjoy himself!

He's started using his words to ask for what he wants these days. And that includes things that aren't in his sight now, too, which is a transition for him. He'll say, "Milk!" in the middle of playing. He MUST have his Choo (Thomas the Train) for just about everything including taking it to bed with him, riding in the car, and going down to Grandma's. And, a testament to just how much he runs around to class and therapy, he has been saying, while we are out and about, "I want to go hooooome." He says "home" in the cutest, longing way. He had Help Me Grow (our state's Early Intervention program) on Monday, class Tuesday, and to Fort Wayne for ABM on Wednesday and Thursday.

I was doing some work stuff on my computer earlier tonight while Gus watched some TV and I heard him say, "That's Me!" only to realize he was singing along with the Caillou song. We are so grateful that we don't have to add communication and speech to our list of issues. I delight in hearing him talk and make requests even if it is, "M&M's please, mama!" Now, really, how can I say "no" to that?

Here's the only video we got at ABM this week with Jon Martinez in Fort Wayne, IN. It's not the best angle to be able to see but Gus is pulling himself forward to get to the musical toy. This is how his army crawl looks right now.