Warm Up To The Idea

When Darren and I first started dating, he babysit my best friend's kids for one afternoon. After the experience of caring for a 2 year old and a 6 year old for a few hours, he called to let me know that he wasn't sure he was up to the task of being a parent.  After I got done laughing, I reminded him that they typically don't drop a 2 year old (or a 6 year old) off at your house and say 'have fun'.  Thankfully, they often come to you as newborns and you get to figure it out as you go along...grow together...warm up to the idea of having a 2 year old. 

I've always thought there was wisdom in that, but no more so than with Matthew.  If on the day he was born you had told me about all the ins and outs of Matthew's journey this past 2 years, I would have run out of the house screaming. I would have never felt up to the task.  But thankfully, we've learned as we've gone along. 

I was reminded of this the other day.  I was thinking about the traditional life cycle of marriage and family-- single, date, get married, have kids, launch kids, empty nest, late middle age, become grandparent, and enjoy retirement.  There are lots of variations to this traditional cycle-- divorces, remarriages, step families, deaths, kid free couples, single adults, etc.  I just expected that our life would would look pretty traditional.  Of course, there was always a chance that our course would change, but I never thought about it.  I just assumed we'd follow the traditional pattern.  Now, with Matthew, I question that.  Potentially, there may never be a time where we are without a child at home.  We don't know anything for sure.  Goodness, I can barely imagine a year from now, but there is a chance that we will not have a traditional cycle now. 

This idea used to scare the dickens out of me, but the other day, it just came to me.  We aren't suddenly going to be 65 years old with a dependent 30 year old. If that really becomes the case (which it may or may not be), we will have ample time to warm to that idea, to figure it out, to grow together.  Everything will work out, just as it should, in its own time. Just like it has to now.

Happiness Is...

We had told Alyssa she couldn't eat one of Darren's caffeine chews (for his marathon), even though it looked like candy because it had caffeine. 
A:  "When can I have caffeine?" 
Me:  "When you run 26 miles."
A:  "How far is that?"
Me: "From here to Granny and Granddads"
A:  "I'd rather just take the truck and not have caffeine."
Me:  "Good call."

Jackson was jumping up and down excited this weekend, excited to invite Darren and I to a pretend Valentine's conference.  No clue what it was supposed to be, but he was really jazzed about it.

Matthew knows where his socks should go.  He lost a sock and was crawling around with only one on his foot this weekend.  Anytime Darren or I would ask him where his sock was, he would stop and grab his socked foot.  Of course, we were looking for the sock he had lost, but he knew he had a sock on his foot. 

Jackson got frustrated this weekend at his imaginary video game.  Funny, and yet speaks volumes.

Hearing Matthew's walker makes my heart sing.  Monday as I was making lunches, I heard that familiar sound and looked around the corner to see Matthew walking around the living room with a big grin. 

And for the biggest news-- on Tuesday during physical therapy, Matthew took his very first unsupported step!  I don't know if I've ever wanted anything as much as I want Matthew to walk.  I want him to be able to run after Alyssa and Jackson, and walk to the park holding my hand, and just walk where ever he wants to go.  He's so close, but it might be a week or it might be a year.  It was only one step, but it is a giant leap for Matthew!  

Do The Right Thing

Maybe I'm naive, but I expect people to do the right thing, and am surprised when they don't.

I think that is why the ADA experience at the mall surprised me so.  As an update, I did send an email to the VP explaining that their policy is wrong and likely a violation of the ADA, and I received a response back from him that said they would review their policies.  Now I just hope they do the right thing, and I don't have to take this further.  But just in case, I am thinking through my next course of action to escalate in case they do not. 

I fear that this isn't the only time I'm going to encounter an experience where people are not doing the right thing for someone with 'special needs', which very well could include my sweet baby Matthew.  I've heard from many parents in my school district that their children's special needs haven't been met at the school.  Scary stories of having to 'opt-out' for private schools, hire special needs advocates, attorneys, move school districts, and the like.  I get anxious thinking about these stories-- because at this point I don't know what I don't know. 

I don't know anything about the special education in our school district, or special education law, or how to find advocates, or attorneys, or special schools.  But I'm trying to calm myself, reminding myself that a lot can change in the 3 years before Matthew gets to be school aged.  And I didn't know a lot about genetics, physiology, development, medicine, and anatomy 2 years ago when Matthew was born.  The learning curve was steep, but I feel like I made it up the curve as I needed to for Matthew.  Now I just have a new learning curve to climb, and thankfully I've got a bit of time to get it figured out. 

Matthew's Bday Experience

For Matthew's birthday experience this year, we thought first about taking him to a dog park because he LOVES dogs.  But then we thought that he might really dig going to a petting zoo.  His favorite iTouch app is Peak-A-Boo Barn, and he loves the barnyard animals. 

We originally contemplated the zoo, since they have a petting zoo, but remembered that there is no better place to see barnyard animals than the Houston livestock show!  Matthew got to see horses and cows, and pet the pigs, sheep, goats and llama...all of which he called 'dog'.  It was a really nice time, where the older kids enjoyed the carnival rides and Matthew enjoyed the animals. It was a great day celebrating our sweet baby Matthew!

Matthew wanted to sit with the animals and pet them.

Alyssa enjoys carrying Matthew around now. And he loves it too!

Jackson really enjoyed the animals and thought the best part was the goat's beard.

This was right after Mattie tried to get through the bars to get closer to the cow.

A boy after his Granddad's heart, Jackson's favorite part of the show-- the tractors.

Day of Firsts

Today Darren ran his first marathon ever, Alyssa had her first softball game ever, and Jackson had his first t-ball game of the season. And they all overlapped, but it mostly worked out.  Darren left for his 26.2 miles at 4:45am with a group from the neighborhood for his 6:47am start time.  Later in the morning, I dropped Alyssa and Matthew's nanny (Ms. Paula) off for Alyssa's softball game on my way to drop off Jackson with my folks so that they could take him to his t-ball game so that Matthew and I could go cheer on Darren at the finish line.  

At mile 26

Darren finished his first marathon!  As he puts it, he didn't hit a wall, but the wall crashed around him at about mile 23.  Thankfully, Darren's brother, Bryan, had driven in from Dallas just to run and push him the last 4 miles.  It was just what Darren needed. Thank you, Bryan!  Even with that wall falling on him, Darren still finished and in a very respectable 4 hours and 23 minutes! He looked a little worse for the wear for a few hours post race, but by this evening you couldn't tell that he had a finished a marathon just this morning.  Great job, my love!

Alyssa played her first official softball game.  Ms. Paula reported that Alyssa mostly seemed to enjoy herself and they played two innings.  But Alyssa reported that her favorite part of the day was playing hangman with Ms. Paula. Not a good sign for softball.  We've yet to ask Alyssa if she is really enjoying softball.  We are intending to make her play for the entire season, so I don't even want to open the can of worms in case she doesn't really like it.  Alyssa has another couple of games this next week, so we'll be able see it for ourselves very soon.  As we've commented before, this league seems a bit hard core for 6 year olds-- a game Saturday, Monday, Wednesday and Saturday.  Whew!

Jackson played his first tball game of this season.  The first time I saw him in the St. Louis hat my heart hurt a little.  As an Astros die hard, it is just not right.  But today's report was that Jackson did a good amount of playing in the dirt as well as tball playing.  Sounds pretty similar to last season. I think the highlight of the day for Jackson was getting popcorn with Granny and Granddad.  Thanks to my folks for taking him to his game! 

To celebrate the day of firsts, tonight we went out for dinner.  And in the first time in a long time, it was a delightful meal out, where all 3 kids were pretty happy.  A nice ending to a great day!

Hand Surgery Update

Matthew's hand surgery was originally scheduled for January 6, and has been postponed 4 times since.  Two issues keep arising-- 1.  Matthew needs to be well for 2 weeks prior to surgery and 2. The anesthesia team at the hospital is leery about Matthew because of his subglottic stenosis (small throat opening).

Issue #1- Matthew just cannot seem to stay well. He was pretty much sick from the end of October through the end of December.  Our pediatrician put him on a month of antibiotics in hopes that Matthew could finally kick the cycle and make it to surgery at the beginning of February.  He was well for 3.5 weeks!  I think it might be a record.  He got sick while he was on antibiotics, just a week before the surgery.  Then Matthew was sick for 3.5 weeks, with a cold that took the rest of our family 3 days to recover from. And finally he recovered.  I excitedly wrote on the calendar last Thursday--"Well!"  And on Monday, the pediatrician agreed-- Matthew was well.  The clock had started!  And then Wednesday, the ENT had to dig pus from his ear.  Not well.  And today Matthew has something yellow coming from his nose, yet again.  Still not well.  Reset the clock to zero.

Issue #2- The anesthesia team is concerned about putting Matthew under anesthesia for the 3 hour procedure because they are not set up for emergency tracheotomy procedures, and they fear Matthew will need one.  I have tried to explain time and time again that Matthew has been under anesthesia 6 times and has struggled with his breathing because the tube that was used was too big. We didn't find out about the subglottic stenosis until the 6th surgery.  Additionally, I have been trying to convince them that Matthew is super baby and will not need an emergency tracheotomy. 

They have asked for ENT sign off, a rescope, and would really like him to be well for 6 weeks before surgery. I thought that was crazy-- first, Matthew hasn't been well for 6 weeks in a row in his 2 years, and to rescope his throat, Matthew needs to be under anesthesia.  Why put him under anesthesia so that he can be put under anesthesia?!?!  Thankfully my ENT agreed with the illogical rescope request, and agreed that Matthew was super baby- he wouldn't need an emergency trach.  The ENT signed off for the surgery, as long as they use a 3.5 tube instead of a 4.0 and provided they give him a dose of steroids after the procedure.  No rescope.  We are awaiting response from the anesthesia team now.

So, before surgery can be scheduled, issue #1 and issue #2 need to be resolved.  We are praying that we can get and keep Matthew well and that we can make the anesthesia team happy-- so Matthew can get a thumb!

ADA Experience

I had an experience at the mall today that both broke my heart a little and ticked me off a lot.  A few friends and I had taken our younger kids to a play area at a local mall (Memorial City Mall) to celebrate a sweet little friend's 2nd birthday.  I took Matthew's push toy because I didn't want to haul around his much larger walker.  

As we entered the play area, the security guard said that they didn't allow in toys. I explained that it may be a toy, but Matthew doesn't walk independently and this was serving as his walker for today and if there was a problem, I'd like to speak to the manager.  Nothing more was said and Matthew crawled around some and pushed around his toy as they all had a grand time.

About 45 minutes later, the security guard came back over and said it was against policy. I asked to speak to her manager.  The manager came over and told me the same thing, and added that they wouldn't have allowed his medical walker or a wheelchair in the area either.  

By this point, I acquiesced about the rule about the push toy (other kids might confuse it and it would seem unfair), but to not allow a medical walker or wheelchair in an area that could easily accommodate it, that just seemed wrong.  So I asked for that person's manager. I was met by the VP of the mall, and he reiterated the same thing, with his justification being that that the play area was a busy place. They do not allow walkers or wheelchairs in the play area because it gets too crowded.  

This incensed me.  It was no longer about Matthew's push toy, or even Matthew.  It was about all of the families that can't take their kids in the play area because either the parent or the child use a walker or are in a wheelchair.  It is just WRONG!

I was heart broken for the injustice of the situation.  The VP tried to appease me by giving me carousel tickets, or a food court gift card, but as I told him, what I wanted was for him to go back and figure out how to accommodate all the families with special needs.  We left it at that...for then.

And after I spoke with him, I cried.  I don't often feel like it, but I was reminded that I am the mother of a "special needs" child.  I have the obligation to speak up against injustices not only for Matthew but for all.  I will never be able to be blissfully unaware.  We now have a horse in the race.

So, I came home, and after the tears, I did a little research.  And not only is their policy WRONG, but it is illegal as well.   From the Americans with Disability Act:  "Some use walkers, canes, crutches, or braces while others use manually-operated or power wheelchairs, all of which are primarily designed for use by people with disabilities. Businesses must allow people with disabilities to use these devices in all areas where customers are allowed to go."

Somehow I'm a bit comforted in knowing that it isn't just an imagined injustice, but it is such an injustice, it is codified into law!  So, I'll be contacting the VP again to make sure he is aware of the ADA and their seemingly lack of compliance in their play area policies.  I hope this opens their eyes and that they amend their policies soon!