Average

We had to do a pretty extensive cognitive, behavioral, speech and gross/fine motor test for Will's application to the next school. We received the preliminary findings and I have never been happier to see the word "average" and it be affiliated with Will. Not delayed, not behind, not special - just flat out average.

In a world where being average doesn't seem to get you much. In a world where parents prefer to hear their child is above average. Where parents push the limits to get above average outcomes for their children.

My son, in many categories, is average. His intelligence has never been a question for me, but now I have proof. He's smart (and a smart a$$).

My son, in many categories, is not average. He is above average. I don't need a test to prove that.

He exceeds my expectations every day. This morning, while I was feeding Quinn, he took his cup of water from the living room and went to the kitchen to put it in the sink. His return time to her room was lengthy so I went to see the problem. I could still hear him talking to himself and moving around, but no loud thuds so I wasn't too worried. (big trees fall hard)

Turns out, he spilled his water along the way. I found him with a hand towel wiping up water off the floor. I didn't ask him to do this, he certainly didn't tell me had spilled. But here was Will, cleaning up his mess, doing his part. He was trying to mop it up with his foot, balance himself and not step in the many puddles of water. A task that is difficult for him. It was such an honest moment and his intentions were so pure. I was so proud of him.

The stark reality of his physical abilities were described in this testing assessment as the ability of a 19 month old. My nearly 60 month / 5 year old son can't run, skip, jump or hop. At first I had myself a good cry about this. It breaks my heart to see him try so hard and know his body is holding him back from accomplishing "average" tasks.

Then I realized that while it's heartbreaking to think about this, it's also an amazing accomplishment. The fact that he is diagnosed with a progressive and fatal diseases that robs his body of the energy needed to function, but yet he pushes on. We are some of the very very lucky few whose child is average. I will never, ever take a single thing Will can do for granted. He has been given more than many others.

I fear for the future and how he and we will handle loss of abilities. The higher the climb the longer the fall. Who knows when, how or if (I hope and pray that the if is a big IF)... But, the future is not here and if all I do is fear it, then I will never enjoy my wonderful son, who exceeds all my expectations and is anything but average.

My average kid - working harder than any other kid I know. (19 months old)

 

Friday Fun Day

Happy Friday! Things are going ok over here...

 

Will - seems to be doing pretty good. Happy, healthy and enjoying being a big brother. He also is largely obsessed with playing football and soccer right now. His little antics are so adult like and he his expressions such as "Holy Cow" or "Let's Roll" "Can you Believe that" and my favorite one when Quinn started crying one time "Don't start that"

 

 

Quinn is doing pretty good too. Hard to believe she is 6 weeks old now. Apparently she has a nasty case of reflux as well as a milk protein digestion problem. So I have adjusted my diet to make sure I'm not eating any milk, butter, cheese etc. - basically anything with milk or milk products in it. It's been easier than I thought.

 

Some fun pics from the past few weeks... 

 

 

One of Will's favorite excursions - Sonic Happy Hour. He gets a special drink and is allowed to sit in the front seat and touch all the buttons. I think he could (and has) spent an hour sitting at Sonic.

Will just had to imitate dad. I think it's funny that Neil is using Will's ipad and Will is using Neil's phone.

Happy Valentine's Day! (Party at school)

And of course, our sweet little sister :-)

 

Who was not so sweet last night... what started with her waking up needing to get a burp out turned into a three hour cry/eat/sleep fest....

 

But made up for her antics this morning.

Quinn Katherine Martin

It's only taken me four weeks to blog that we have a new addition to our family! Quinn Katherine Martin was born on Thursday, January 9 at 4:44 p.m. She weighed 8 pounds and 15 ounces (Will was 9.1) so just two ounces different.

I had been having contractions on and off for at least a week and was already dilated so Neil and I kept thinking it would be any day. We went in for a check up on a Tuesday and my doctor said, you're already 4 cm and having contractions you would "be an easy push" so let's induce. I'm not sure anything is easy when it comes to child birthing...

We arrived Thursday morning at the hospital, they broke my water and a mere 8 hours and 30 minutes later she arrived. And no, that was not an easy push, but she was much easier than Will's 21 hour labor.

Life has been turned upside down since then. (shocker, right?)

Will is simply in love with his baby sister and so very proud to show her off. Literally, he tells every one and wants to show them "my baby" as he calls her to everyone. No matter if she is sleeping, eating or pooping.

It's definitely been an adjustment for Will, but overall he is taking it in stride. I think the first two weeks were really rough, but we're slowly getting into a routine and as long as he is able to help and she isn't crying he is pretty happy.

Oh the crying. I have forgotten how much babies cry. Seriously. Stop. Crying. You're dry, fed, rested and cuddling, why are you crying? :-) Thankfully, she has finally figured out that the changing table is not a terrible place, but just a few moments of a chilly bottom.

She went in for her two week check up and is already up to 9 pounds 7 ounces. She is quite the eater. I won't bore you with the details on the lack of sleep patterns, nor the serious lack of sleep I'm getting, but this too shall pass.

I am just so incredibly happy that Will is a big brother to a beautiful little lady. She has so many features that look like Will - her mouth and nose for sure.

 

 

Meeting his sister for the first time.

 

First Bath

 

Photos by Sara Catherine Photography - 2 weeks old

The constant helper

Oh mother please...

This is Will at 2 weeks old...

 

And here at 3 weeks old.

 

I can't really explain or express how happy I am. It took us a long time to get here, lots of heartache, second guessing and disappointment. It's weird to look back on the past two years and realize that everything really does happen when it should Will is so stable right now (knock on wood) and that makes this "fourth trimester" a lot easier. I have so many hopes and dreams for our family and this was one of them.



 

Christmas 2013

Hello Blog!

I took the past few weeks/months off from the mito community and blogging. It might sound silly, but I needed to focus on the last few months of pregnancy being in a positive and low key place. I knew I needed to eliminate some of the "noise" and so I just took a break. It was nice. I still plan to keep posting, but needed to take a step back. Plus, I really just wanted to enjoy every moment of our little family of three.

Here is a quick run down for my own memories of what we've done since I went MIA.

Christmas! Will had an absolute blast and it was so nice to have a solid two weeks of time just with him at home.

We beat the heck out of Frosty the Snowman piñata - random fun!

Our cowboy got a barn, horses and of course Longhorns from Santa

Making cookies at the lake

Breakfast with Santa

Hey football player!

Enjoying the big swing on Christmas Day