Happy Halloween

We had a grand time trick-or-treating!  And I am once again overjoyed that the kids agreed upon a theme-- for those without young children, this is Jake (from Jake and the Neverland Pirates, a Disney cartoon), his friend Izzy, and Captain Hook.  Yes, Captain Hook prefers sandals to boots. 

Uga Muga

Every so often, the difference between the life we are leading and the life we likely had imagined strikes me.  I had that moment last week as I walked Matthew into school.  Before Matthew was born, if you had asked me to envision what life might be like 3.5 years down the road, I would have come up with something, but I really have no idea what that might have been.  I know it wouldn't have included (a) me being a stay at home mom nor (b) Matthew being unique nor (c) Matthew attending a preschool program for kids with disabilities.  Even though I would have never imagined it then, I can't imagine my life without it now. 

I love walking Mattie into preschool, even though he can be quite obstinate about it at times.  Holding his little hand, seeing him with his backpack, walking with him into the classroom, hearing him saying 'hi' to his classmates-- all moments I wouldn't want to miss.  Last week, he wanted me to carry him in.  As I picked him up, he wanted to 'uga-muga' (rub noses). I stood still, wanting to soak in the moment.  It might not be what we imagined, but it is better than we could have dreamed. 

Cried Uncle

I apologize for yet another potty training post, but promise this will be the last one for a while.

After what felt like a successful weekend, Monday (10 days into it) was horrific. 8 accidents in as many hours. It wasn't like he wasn't going to the potty. He would have an accident just minutes after going! And he started getting pretty obstinate about going too. Even with that, Monday night, I was undeterred. I knew we had success over the weekend and figured we just needed to be more stubborn than Matthew. I have many more years practice at being stubborn!

Tuesday morning started well. And I figured the school day had gone at least pretty well because they hadn't called me to bring up additional clothes, like they had on Monday. I walked into his class to find out he had just 1 accident. Not bad! They also let me know that he had gone potty just 8 minutes earlier. Nevertheless, I wanted to follow our routine and take him to the potty one more time before we left. There I found yet another accident. As is practice, I put him on the potty anyway, where he proceeded to pee yet again. Ugh! In a span of 8 minutes, he went to the potty twice AND had an accident!  After the next accident right after we got home, I cried 'uncle' and put a diaper on him. I just do not have the mental fortitude for this! So, he won this battle, but in the long run, I will win the war.  We will take a break and try again later.

As I was recanting this story for a friend, she asked 'Are you sure there isn't a physiological issue? He doesn't seem to be emptying his bladder.' And then it hit me- he isn't usually emptying fully. And he has to work at it when he does. I was blaming his attention span (or lack thereof) and his defiance, and that may play a part, but there is likely a physiological explanation too.

During his first surgery, when he was 5 months old, a nurse inflated the Foley catheter balloon in his urethra instead of his bladder. It caused trauma and he voided blood after the Foley removal. Later that stay, he required recatheterization so that he could void and heal. The urologist scoped his urinary tract during his urology surgery 10 months later and found scar tissue build up in his urethra from the trauma of the misinsertion of the Foley. At every urology appointment since, our Dr asks about Matt's stream, which to this point I never had an answer because he was going in a diaper . Now we have 11 days of data points that aren't really encouraging and we anxiously await our next urology appointment (which was already scheduled for his yearly kidney check) coming up next month. 

At 3 this morning, when all of this was still swirling around in my head, I was less frustrated with Matthew, but more ticked at the medical mistake that seems to be making something not easy even more complicated! I am even more ticked off now than I was when the trauma happened 3+ years ago. Like Matthew doesn't have enough challenges with the laundry list of anomalies that have arisen out of his chromosome disorder, he definitely didn't need additional anomalies created! Just UGH! 

Sweet Letter

Matthew received a sweet letter in the mail this past weekend.  It was from his 'little mommy' at his Cypress preschool.  She was so kind and loving to him and he adored her. She has since  moved on to Kindergarten and we moved to Austin, so they haven't seen each other since June.

"I want you to come back" with a picture of the 2 of them. 
So very sweet!


A picture of the 2 of them together can be seen here.  So sweet!

Fretting Over Small Milestones

I've fretted about each of Matthew's milestones-- unsure if and/or when he would hit them. I took a sigh of relief after Matthew uttered a few words, thinking speech was the final frontier.  I realized Saturday morning that I was wrong. There will always be another milestone, another reason to fret, down the road.  It might be a smaller milestone, like using a spoon, but there are many more to look forward to and that will likely cause me consternation. 

After a horrible potty training day on Friday, Saturday morning I was dejected by Matthew's potty training progress. My mind was swirling with the doubt-- will he even be able to do this? is his body so different he won't be able to do this?  what will our life be like as he gets older and never does this?  After my fretting, he seemed to figure it out a bit more this weekend.  After a Friday (almost a week into it) with 7 (!) accidents, he had only 1 (!) all weekend long.  Now, I'm not doing a happy dance just yet, as he's still a long way from bathroom independence, but this was great progress!

Matthew has proven to us time and time again that he will do it on his time table, not ours, but it is a lesson I have to be reminded of, in real time, again and again.

I fretted Matthew wouldn't be able to master a spoon,
but he has figured it out!

Lovin' and Not

Some of the things I'm lovin' these days---

I volunteer once a week at the elementary school, helping Jackson's teacher do workroom projects.  This sign hangs in the work room and I love it...a lot!  The compliments range from 'You are doing a great job' and 'Thanks for all that you do' to 'You look great today' and 'Nice shoes'.  In my book, whomever thought of this sign is as awesome as the sign is.  It makes my day every day I see it.

I was clearing out the closet of outgrown costumes and one costume of Jackson's caught Matthew's eye.  Unfortunately, it is too small for Mattie, but he didn't seem to mind playing dress up in it anyway.

Alyssa and Jackson made a rocket ship out of a discarded Amazon box and it has been a favorite this week.  This picture looks like quintessential childhood to me.

Uncle Bryan and Aunt Brandi bought the kids a huge box of chalk and it has gone to great use on our driveway, walkway and porch.  I love it! 

The one thing I'm not lovin'--

There is a large amount of wildlife in our neighborhood that freaks me out.  I've seen a snake and trachela crossing the road (sounds like the start of a joke, but believe me, I wasn't laughing).  We have huge lizards living in our bushes.  We found an ugly spider on the car.  You can hear coyotes howling at night.  It's just a little more rural than this suburbanite is accustomed. 

Last Bits of Babyhood

The last bits of babyhood have left the Hoy House.  There is no longer a row of 3 car seats smashed in the backseat of the car.  The strollers are no longer in the trunk, but now hang on the garage wall, with cobwebs covering the wheels.  The crib is in the attic, disassembled, awaiting a new life with a future niece or nephew.  There are no booster seats at our kitchen table.  And our youngest Hoy is now wearing big boy underpants. 

Potty training is not fun at all.  I figure the 'not fun' part will last a bit longer with Matthew than it did with the other kids. It usually takes a bit longer for the switch to get flipped for him, but he is making progress, albeit slow.  I love progress and the thought that one day all of the kids will be bathroom independent.  Until that happens though, I foresee a bunch of laundry and more than a few glasses of wine in my future. 



Rattlerfest

Friday night was the school Fall festival (aka Rattlerfest), and we had so much fun.

We enjoyed fair food--
hamburger, hot dog, french fries, funnel cake, fried snickers and frozen yogurt.
My stomach aches just thinking about it all!

I think Alyssa and Matthew enjoyed the petting zoo the most.

While Jackson totally dug inflatable boxing with his friend.

Even better than the fun, it felt like we belonged.  The kids were constantly saying "hi" to friends, we ran into neighbors, I talked with some moms that I volunteer at the school with, and we met parents of our kids' friends.  It was such a contrast to the day of open house, where we didn't see a soul that we knew.  I came home after open house and cried.  I felt so isolated and alone, missing our 'old' life.  After Rattlerfest, I felt content with the warmth of belonging.  It felt good.

Red Letter Day

A few years ago, with 3 young kids, one of whom was classified as 'medically fragile', I joked that we were helping our pediatrician buy a new car.  For a while, we were seeing the pediatrician almost every day, but once in a while we would have a 2 or 3 week stretch without seeing him.  Those few week stretches felt amazing at the time.

Fast forward to today, we haven't seen the pediatrician (any pediatrician) in 6 months.  Again, SIX MONTHS!  It is beyond imagination!  The last time we saw our pediatrician was right before Matthew's bowel obstruction surgery, which was 6 months ago this weekend. 

I've said it before (I'm going to keep saying it, so sorry if it is getting old)-- life is good!  Thanks be to God!

Kindles

A few random thoughts that all connect:

Alyssa loves to read.  It makes my heart sing, as I love to read too.  She's been a big reader for a couple of years now, and she devours books. 

(This connects, I promise.)  Over the summer, we started allowing Alyssa and Jackson to earn an allowance. When we started, we had the kids write down a 'want' list of items for which they would save their money.  Alyssa's number 1 item on her want list was a Kindle.  She has about a dozen books she reads on my Kindle (which I got for Xmas last year-- thank you, Darren!), and she wanted one all her very own. Even the cheapest new one isn't all that cheap for a 7 year old, and at $4/week max, it was going to take a while to save up.  Adding to that time, Alyssa lost her saved money (about $40) during our trip to LA--hope someone enjoyed it.   

 (Again, promise this connects!)  Our neighborhood has a facebook group where people buy and sell their no longer loved possessions. I found an older Kindle on the site, and Alyssa was able to purchase it with her saved money on Sunday.  Big win!  Alyssa loves her new-to-her Kindle that she bought with her own money!

Adding to the excitement-- did you know that you can check out ebooks from the library?  We knew in theory, but hadn't done it until now, and wow!  Awesome!
 
Last year, Jackson begun reading, but I wouldn't say he was in love with it.  This year, before the Kindle purchase, he had come around and exclaimed "I love to read" the other night at bedtime (again, making my heart sing!).  Now that Alyssa has a Kindle, Jackson has decided he wants to add one to his 'want' list.  I told him while we await a used version on our neighborhood site, he can borrow mine. 

So, yesterday when they got home, they both rushed to grab the Kindles to read their checked out library books.  Yippee! 

My old school heart hurt a bit that they are so enamoured to read on technology, but Jackson renewed my hope in the future when he asked if we could go to the library this weekend to check out a 'real' book too.  Ah, life is good!

Verbal Jump

We are in awe of Matthew's recent verbal jump.  Now, to the outsider, it might not appear to be much.  He's got about a dozen words strangers can mostly understand-- mama, daddy, hi, bye, no, thank you, good, go, uh-oh, ow, ok, shhh along with some specific sounds like meow, moo, and woo-woo.  Not exactly a huge vocabulary for a 3 year old, but when you go from absolutely nothing to something, it is a huge leap!  And one we are still quite excited about!

Matthew attempts many more words and sounds, but they aren't always recognizable.  This is also a big jump for him, as he wasn't even attempting before this summer.  He still has a long way to go, with likely years and years of speech therapy but this jump has been huge.  I feared he wouldn't walk-- and he runs.  I feared he wouldn't talk-- and with these few words, he's put my fear aside.   

The other day at a restaurant, I overheard Matthew having a small (and awesome!) conversation with a nice woman at the soda machine. 
Matthew- "Hi" 
Stranger- "Hi.  How are you?" 
Matthew- "Good"
Stranger- "Oh, that is wonderful.  Have a good day."
Matthew-  "Bye"
Stranger- "Bye"

Matthew was playing with my phone while awaiting therapy on Monday
and some how turned the pictures to black and white.  Never boring.

Happy Heart Day!

3 years ago today, Matthew's failing heart was fixed.  On that scary day in the cardiac waiting room and more than a few days since, we weren't sure Matthew was going to live to see 3 years old.  There was no way we could have ever imagined all the wonderful and crazy of Matthew today. We are so very thankful for the past 1096 days and look forward to the next 1096!  Happy Heart Day!

Matthew showing what he can do with his healed heart.

Planned Obsolescence

noun. 

a policy of producing consumer goods that rapidly become obsolete and so require replacing, achieved by frequent changes in design, termination of the supply of spare parts, and the use of nondurable materials.

 

 

The planned obsolescence of my possessions often drives me nuts.  I had an Ipod I really liked, but it developed a glitch.  I took it in to see about fixing it.  The estimate to fix it was about $30 less than it would cost to get a new one.  Just crazy.  It seems like that is the case for just about every product in my life-- except 1.  We lost the spring to the lid of the trash can in our kitchen. If you go to the store, you cannot just buy a trash can lid, you have to buy a trash can to go with it. With the planned obsolescence of just about everything else, I assumed we'd just have to get a new trash can or do without a lid (not my favorite choice), but I thought I'd contact the manufacturer anyway (Rubbermaid).  I submitted a request on their website, and low and behold, a few weeks later, an envelope with 4 springs arrived at my house!  Not only did I save my trash can lid, but I had spare parts in which to fix it again.  Free of charge, no less!  Sadly, this makes me very happy since it seems such a rarity these days.  High five or four to Rubbermaid!

As I think about my role as 'mom', I think I'm more like Apple than Rubbermaid.  My goal is planned obsolescence.  I want to live life, parent my kids, and expect that one day, I will become obsolete, or at least not used in the original way.  I want my kids to not need me, to figure things out on their own, and to live life their way.  I have that goal in mind in almost everything I do as a parent, in hopes that (1) they will become wholly independent successful adults and (2) that they may not need me, but that they'll still want me around. I can hope.

The Olden Days (according to Alyssa)

Earlier this week, Alyssa and I were talking about her homework and she commented that Matthew doesn't have homework yet.  To finish off that thought, she said "Oh, how I miss those days." Hehehehe.  At the grand age of 7, she misses being 3. 

Playing chase, Matthew caught Alyssa.

A Letter to Me (2-26-10)

I just read a blog post-- A Letter to Me Before the Birth of My Special Needs Baby.  After her letter, she asks- What would you say to yourself if you could go back to the day before your baby was born? Here's my answer:

Dear Me (February 26, 2010 at 8pm),

I know you are pretty uncomfortable and so ready for ‘Tres’ to enter the world.  You knocked off all the items on your ‘before the baby comes’ to-do list, including trading in the Mustang GT convertible for the more practical Fusion Hybrid that can fit 2 car seats plus an infant seat in the back--just today.  You’ve gone to fish fry and come home to lie in bed.  Tonight, ‘Tres’ is going to rock your world and he will continue almost every day from now on.  Consider this a warning you need to gird your loins! 

‘Tres’ will make his entrance so much faster than you planned, but thankfully the midwife will get there just in time for the delivery.  You and Darren will notice that this little baby looks a bit different than your other babies.  You will wonder if it is because of the quick birth.  Just ignore it, and soak in his newness.  Remember the realization that you had right after Alyssa was born—that this is the closest you will be to God before you die.  Just moments ago, Matthew was with God, and right now he is in your arms.  Soak it in.

In a few hours, you will be given what to this point is the greatest shock of your life.  When the pediatrician looks down at your son’s hands, know that they are absolutely perfect and Matthew will do amazing things with those 4 beautiful fingers.  Do not fret about his hands.

In just over 24 hours, you will realize that none of us are guaranteed a particular future.  It would be wise to write that down and read it every now and again.

In a few days, in the dark of the night in the NICU, you will find yourself in the deepest, darkest despair.  You will pray for God to take your son rather than subject him and all of you to a horrific life as you were described.  Tomorrow will be brighter as they will start running test that will give you hope for Matthew’s future and yours.  That night, and many since, you will fear that your life will never be the same.  You were right, it won’t, but not in the scary, horrible way that the doctor will paint for you.  Your life will never be the same, but it will be wonderful!

In a few weeks, you will hear a diagnosis that you have never heard before.  Don’t google it.  Step away from the computer. It is scary to be diagnosed with something so rare, but it is also freeing.  Matthew blazes his own way.  When you read too much even though I just warned you not to, remember he isn’t the little boy you read about with a similar diagnosis.

In the next year, you will be shocked time and time again.  You will be afraid that you will not get to see Matthew grow up, but what you don’t know right now is how strong and tenacious he is.  God gave him the perfect disposition for his challenges.  You will spend more time in doctors’ offices, therapy appointments, and time in the hospital than you ever imagined.  Just make sure to pack snacks for you and the big kids, be pushy when you need to pump, and always take a book with you.  You will grow to love Team Matthew.  As you are freaking out at all the things going on around you, you will lose your keys—a lot!  It will all be okay in the end. 

You will cry in the shower almost every day for Matthew’s first year, sometimes scared of what is to come and sometimes mourning the loss of the life you expected.  It’s okay to cry.  You will be less scared and mourn less and less as time goes on.  Though, once in a while, it will sneak up on you in unexpected places.   It will be much more infrequent.

I have good news!  You will worry if Matthew will smile and laugh.  He is most joyous!  You will worry if Matthew will walk.  He runs and rides a tricycle!  You will worry if he will talk.  Your heart will melt every time he says ‘mama’.  It all happens on Matthew time.  He will amaze you!

Even though you aren’t always as kind as you should be to one another in the stress and the chaos that has become your lives, your beloved will be your rock and you will fall even further in love with him.  He is your perfect partner and the greatest dad to Alyssa, Jackson, and Matthew.  Be better to him. Your fabulous friends and fantastic family will stand by you through it all.  Their love and support get you, Darren, Alyssa , Jackson, and Matthew through many hard days and nights.  Thank them often and remember you are blessed. 

Once you get on the other side, and you do get on the other side of that very rough time, you will be unbelievably thankful.  You will know you have witnessed a miracle, actually many, many miracles. Thanks be to God!

Sincerely,

Me (October 1, 2013)