We originally started this blog (years ago) to keep track of the every day things in our lives that we didn't want to forget but knew that we would in time. As life got in the way, we posted less and less until March 2010 when Matthew's arrival rocked our world. Now we use this blog to let everyone know how Matthew is progressing and the big events going on at the Hoy House. We are so appreciative of everyone who has read our story and has thought and prayed for Matthew and for us.
With the Mega Millions jackpot up to over $600 million, the news has been a buzz about the odds of winning and such. If Matthew could play, I'm pretty sure he would win. He seems to always beat the odds.
Odds of winning the Mega Millions- 1 out of 176,000,000
Odds for some of Matthew's uniquenesses:
Intestinal Malrotation- 1 out of 500 babies Missing Thumbs- 1 out of 100,000 babies Craniosynsostosis- 1 out of 2,000 babies Patent Ductus Arteriosus- 1 out of 20,000 babies Horseshoe Kidney- 1 out of 600 babies Microtia- 1 out of 12,500 babies
Odds of having been diagnosed with Matthew's chromosome disorder (4dup25q34.2q)- 1 out of 3,500,000,000 people (yes, that is 3.5 billion).
Matthew defies all the odds. I think I'll have him pick my lottery numbers tonight!
I began collecting PJ Funnybunny books long before I had kids. I first saw PJ on a Saturday morning cartoon special and fell for him because he was a cute, big eared rabbit. I then spotted PJ books when I worked in a bookstore in college, and couldn't help myself.
So, fast forward 15+ years and my PJ Funnybunny collection is finally coming in handy! I am always excited when the kids pick a PJ book for their nighttime story. I was even more excited yesterday when Jackson started telling us his version of the PJ Funnybunny book "It's Not Easy Being A Bunny".
Matthew's feet have always been unique. Many doctors have looked at them, noticed they were unusual, but never really addressed it. When Matthew was an infant, we avoided putting socks and shoes on him because his feet would swell. Either that went away or we noticed it less, until recently. His feet seem swollen again. And thinking it over, his toenails don't seem to be growing either. I can't remember the last time we had to cut them.
I read an article posted through the rare disease support group that was talking about appendage swelling in a child with an atypical venous structure. Although this child's rare disease is much different than Matthew's, some of his symptoms sound a bit familiar. Matthew has swelling in an appendage and an atypical venous structure (found during his heart cath). We probably shouldn't ignore it anymore. So, we went to see the pediatrician to start the investigation.
First, urine test to check kidney function. Thankfully, okay. Second, ultrasound to rule out blood clots. Thankfully, okay. Now the issue is what is next. No specialty claims the peripheral vascular system as their own. Our wonderful pediatrician is trying to find the right person to see next.
I don't want to dismiss this as 'just another Matthew uniqueness' until we know that it won't have any long term implications. In the article I read, the parents were searching for a doctor to help them, because the doctor they were seeing recommended amputation. I can't imagine that Matthew's uniqueness would lead to that, but I want to make sure we are being diligent now so that we don't have to do something drastic in the future.
Yesterday was a great day! We went into the day with low expectations. "What would you like to do today? I don't know, what do you want to do?" So, we lazed around and spent time having a bit of fun as a family instead of trying to run errands, get any to-do's off our list, etc. It was delightful.
We took Jackson outside on his Spiderman bike, which does have pedals (in contrast to his balance bike) and doesn't have training wheels anymore. After a lot of complaining about not wanting to ride, Jackson was riding his bike sans training wheels! He needs a little help starting but he has all but mastered going and stopping.
Jackson riding his bike for the first time sans training wheels
Also yesterday, Matthew decided he would test out walking on his own. Previously he'd walk a few steps if we'd hold him and he'd lunge forward a few steps to get to the other person. He always needed someone to help him start out. Yesterday, he WALKED a few steps to/from the couch. No help needed. It was a beautiful sight! Our sweet baby Matthew has persevered-- and is walking!
Matthew taking real steps!
We celebrated the big accomplishments of yesterday with dinner out at one of my favorites, Freebirds. Surprisingly, all the kids were pleasant, ate well and it was a nice time. A great ending to a great day!!
I recently read an article that said that perseverance was a better indicator of being successful than were skill or talent. If that is the case, then Matthew is going to be a-okay. He perseveres more than anyone I have ever met. It took him weeks of trying, probably dozens of times a day, but he has finally figured out how to climb up on our bed. And who knew that the simple act of walking had 2 dozen intermediate steps? Matthew tries, and tries and tries. And though he is frustrated a lot lately, he very rarely seems to get frustrated at trying, again and again and again.
"It's a phase. It's a phase. It's a phase." I am having to tell myself that about two dozen times a day right now. Matthew is going through the perfect storm of phases. He wants to always be on the move, so anytime he is confined, he flips out. He wants to get into everything, so when he can't, he flips out. He has many, many wants and needs that he cannot communicate, so he flips out. He is going through a bit of separation anxiety, so if he is not being held or if you walk out of sight, he flips out. Matthew is flipping out a lot these days-- with a mix of whining and crying and a bit of grunting.
When he's not flipping out, he is still our sweet, happy baby Matthew. Those moments are just fewer and farther apart these days. "It's a phase. It's a phase. It's a phase." Unfortunately, Matthew's phases tend to last about 3 times longer than they were for Alyssa and Jackson. Should make for a rough few weeks. (Please, not months!) In perspective, this phase is a good thing as it means he is continuing to develop, but it is rough in the midst of it!
Ever since I read the blog in response to the couple that sued the doctors for wrongful birth, I haven't been able to get that lawsuit out of my mind. I just can't help but to think about our journey with our sweet baby Matthew.
A picture of my supposedly typical 'Tres'
I'm not sure what our ultrasound tech was actually looking at during my 18 week ultrasound, but she missed Matthew's missing kidney, his missing thumbs, his heart defects, his malrotated intestines, and who knows what else. But instead of wanting to sue her, I want to kiss her!
I keep thinking about what might have happened if she had found these things. We would have likely been referred to genetics, a higher risk OB, etc. Our beautiful home birth would haven been replaced with an unwanted hospital birth. We would have been scared for months and months and likely told a bunch of scary things (like we were on the first night of Mattie's first hospital stay). Who knows what they would have suspected his disorder to be without an amniocentesis--probably trisomy 18, which is 'phenotypically similar' but different. Like so many carrying a child with a genetic disorder, we might have been told that the child might not make it out of the womb, or that he might not live past birth, or that his quality of life may not be worth living. Our gentle ease into Holland might have been a plane crash. And even with all of that, it wouldn't have changed anything. Our sweet baby Matthew would have been born exactly as he is, but our journey to his birthday likely would have been much, much scarier.
But Matthew's life has been and is full of joy, beauty, and fun.
I can't imagine a world without our sweet baby Matthew, nor would I want to. His squinty grin. His giggle. His blue eyes and dimples. His beautiful 4 fingered hands. His sweet disposition. His amazing determination.
I am a better person because I am Matthew's mom. We are a better family because Matthew is a part of us. He is amazing, strong and vibrant. He inspires us to be better people. He is our perfect, unique, sweet baby Matthew. Every day with Matthew is a good day!
Matthew saw the big laundry basket in my room and started pushing it. He came upon the dresser, with the doors open, stopped, pushed one door closed, pulled the other one closed, and kept going. Not only was I giddy because he was up walking with the basket, but he understood what he needed to do to avoid the doors on the dresser. Not a big deal to most, but he understood what to do (which is sort of a big deal to us)!
Jackson has avoided time outs for the last 4 days. Lately, I've just had to remind him to make good decisions and he's changed his attitude. We are enticing him to go 7 days by offering him something he's been really wanting (a light up lightsaber). I sure hope the streak continues the 7 days and beyond!
I was talking on the phone and Matthew was crawling all over me. I kept telling him "say hi", emphasizing the H sound. He breathed out, trying to make the H sound!
Alyssa is very into reading right now, and some of her favorite books are a series called "I'll Read to You, You Read to Me". The premise of the books is that one person reads a couple of lines, and the other person reads a couple of lines, back and forth. At the end of each short story, it ends with "I'll read to you, You read to me" which you are supposed to say together. When we read that part, she grins from ear to ear.
Alyssa reading her 2nd favorite series- Captain Underpants
Matthew has 2 new signs-- "Please" and "Help". I love when he communicates, no matter the way!
The other day, Jackson was walking around the kitchen saying our telephone number. No clue how he learned it, as we haven't worked on it and he says they haven't at school either, but we are glad that he knows it!
Alyssa has been all about games lately--Uno, Trouble, Match It, or whatever anyone will play with her. She's happy to play with anyone, any game, anytime.
Alyssa convinced Jackson to play Candy Land with her.
Matthew has a one tract mind lately--get into everything! One of his favorite things to do right now is to stand on a step stool in the bathroom, brush his teeth, and unload the drawer next to the sink.
If we can't find Mattie, 9 times out of 10 we find him in the bathroom,
on the stool on his tippy toes.
First, we had family visit from Chicago. We love spending time with them! They brought some much needed rain with them, and we had a nice, relaxing weekend together celebrating Darren's birthday and then the visit was topped off with a night out at the rodeo enjoying Zack Brown Band. Lots of fun!
Mattie with his Godfather
Reading a story with Aunti C.
Out without the kids
Then the kids and I went with some friends to Galveston to play on the beach for the day. Besides getting sunburns, it was a fantastic time playing in the sand.
They enjoyed the beach even though they couldn't get in the water, due to a bacteria warning.
They were covered from head to toe in sand.
We all had a great time!
Then, the rest of the week, we just did normal stuff-- played with friends, went to the store, watched some tv, and visited a few parks. Additionally Alyssa and Jackson spent a morning at gymnastics, played some video games, practiced t-ball and softball, and helped Granddad plant some corn. A good time was had by all!
Fun at the store.
Alyssa helped push the boys on the swings at the park.
Entranced by the television.
Helping Granddad plant corn.
Alyssa commented on the way home how good the corn is going to taste.
Every so often, I am sent a link to an article about special needs parenting or I stumble upon one reading various blogs. These are a few of the articles/blog posts that have resonated with me lately. They say it better than I can.
-7 Things You Didn't Know About A Special Needs Parent In particular, numbers 2 through 5 sounded very familiar to me. Once in a while I do get jealous, sometimes I do feel alone, often I am scared, and words can hurt.
-Perhaps You Should Sue God We know the beauty of the unexpected and unknown. It is hard and wonderful. We are constantly reminded that every day with Matthew is a good day!
-Does Intelligence Determine Worth I've been thinking about how much our society values intelligence, and what that might mean for those with special needs. We often revere and praise those who are considered 'gifted', but what does that say about those on the other end of the spectrum? I stumbled upon this blog post in Parent's magazine and I started following her blog that same day.
Though our journey with Matthew seems unique (and a bit isolating as we still don't know about the one other person in the world with Matthew's disorder), our experiences are echoed in many of the experiences of other special needs parents, which is oddly comforting. Matthew may be 1 of 2 in the world, but he is not alone, and neither are we.
We are thankful we are navigating Matthew's journey in the age of the internet, which has helped us get knowledgeable about medical information, stay connected with friends and family, and form de facto support groups across thousands of miles. Technology is cool!
I won't be winning any mother of the year awards any time soon, and not just because I forgot to put sunscreen on the kids during our day at the beach. Patience has never been my finest virtue. I often half joke that I asked God for patience and instead of granting me patience, he granted me opportunity after opportunity to practice patience.
I feel like I haven't been doing a very good job of it lately. Right now, Matthew is whiny and getting into every thing (as my broken iPod Nano can attest). While developmental-age appropriate, which is a reason to rejoice, it is testing my patience. Add in Jackson's periodic freak outs and over emotional moments and Alyssa's stubborn sassiness, and I lose my cool. I have been too short with the kids lately, and generally not the mom I want to be.
I'm not proud of it, but hope by admitting it here, I will be able to reset my patience bank. I'm praying that I can be the mother my kids deserve, to be patient when the opportunities to practice arise.
I received an email back from the VP of the mall in which we had our ADA issue. They have reviewed their policies, and despite what I was told (but per ADA standards), they do allow medical walkers, wheelchairs, canes, and crutches in the play place. According to his email, their policy has been reinforced with all personnel.
Very good news! I wish that it hadn't happened at all, but I'm so thankful that I didn't have to escalate, and all it took was a discussion and an email. Matthew and I will be back there soon, with his walker. It is a very nice play place for the little ones and I'm happy that they will be inclusive of all families with special needs.
I am learning as we navigate Matthew's journey, and this experience taught me that I need to keep a copy of the ADA in my diaper bag for just such occasions. Lesson learned, and thankfully, issue resolved!
Necessity is the mother of invention. Our PT had voiced that there were a couple of forces working against Matthew walking-- 1 is that he is so very fast when he crawls and 2 is that he is so efficient with the push toy, he is relying on it too much. We can't do anything about the first, but for the second, we hid his push toy. We really want him to use his walker, though it is more cumbersome, because it keeps him in a more upright walking posture. And within a few hours, Matthew had found other alternatives, both of which were more acceptable because he has to be more upright to push them around.
And as we've been working with Matthew in therapy and practice this week, Matthew is up to 3 steps unsupported. He still needs help getting started, and it will likely still be some time before he's able to walk independently, but they are baby steps! And we celebrate those baby steps!
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.
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!
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.
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.
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!
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