Rare Disease Day

Today is worldwide Rare Disease Day.  It doesn't get much more rare than our sweet baby Matthew.  Matthew's uniqueness (4q25-34.2 chromosome duplication) is so very rare-- he's 1 of 2 in the world! (that we know of)  It is so rare, I doubt it even registered as one of the over 7,000 rare diseases that have been identified.  But even if he is only 1 of 2 in the world, he is not alone.

Some of the facts about rare diseases--

Rare Diseases affect over 250 million people worldwide, 30 million people in the US alone, with 75% affecting children. There are over 7,000 rare diseases that have been identified, all with very unique needs, but many with little to no support. We need to be viewed as one: one community of millions, impacted by disease. Rare disease is not so rare, and the community is much more likely to garner the support, attention, and resources it needs if it is viewed as one.

The Global Genes Project™ exists to unify, support, build awareness and raise much needed funds for those affected by rare disease. The Global Genes Project™ campaign broadly promotes the needs of the rare disease community as a whole, engaging the general public, garnering corporate support under the unifying symbol of hope: the blue denim ribbon.  (source: the Angelman Syndrome Foundation) 

We support the Global Genes Project and all of those, like Matthew, who are affected by rare diseases.

Thank you!

The care and support we have received in the 731 days of Matthew's journey thus far has been an amazing testament to God's provisions in our darkest moments.  

We owe a huge debt of gratitude to--
-Our friends and family- without your love, support, and help this journey would have been infinitely harder.
-Our pediatrician- who has cared for Matthew with compassion and sees Matthew for the unique being he is.   If it weren't for his diligence and care, Matthew likely wouldn't have lived to see his first, much less his 2nd birthday.
-Our team of specialists- we are so thankful for the really smart doctors in the world, and are so thankful that our son is seen by an amazing team of them.
-Matthew's team of therapists- with us, who are always working to help him get to the next stage.
-The office staff at our doctors' offices- we are thankful they have worked us in when the schedules were booked, for the warm smiles for Matthew and all of us, and for the joy they have shown for Matthew's progress.
-TCH- we are so thankful that we live in a city with a first class children's hospital. 
-Night Nurse Nicole- without whom I wonder if Matthew would have been fitted for a permanent feeding tube.  She was heaven sent, at just the right time.
-Brooke Martin Photography- for capturing our family of 5, as we are, but always making us look better than we do. 
-Hoy House Blog Followers-- we've had 45,825 views of this blog-- thank you to everyone who has followed Matthew's journey and has thought and prayed for him and for us!

Mere words are not enough...but, thank you!!

Thank you!

Happy 2nd Birthday, Matthew!

Happy 2nd birthday to our sweet baby Matthew!

Matthew loves--

-blueberries.

-balls.

-dogs.

-opening and closing drawers, cabinets, and doors.

-the Peek-a-Boo Barn iTouch app.

-walking-- with his walker, or his push toys, or holding on to your hand(s).

-the piano.

-the recorder.

-music.

-crawling-- fast.

-giving big open mouth kisses and head bonks.

-being tickled on his belly.

-going to the park.

-his push car.

-playing with Alyssa and Jackson.

We feel so unbelievably blessed to have celebrated 2 years with our unique, sweet baby Matthew!  And we pray for many, many more birthday celebrations in the future!

Holland Revisited

“WELCOME TO HOLLAND
by
Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

Some days I forget we are in Holland.  Most days, we are taking in all the sights, enjoying the experience, and noticing all the beauty in Holland.  For us, Holland has been a bit dramatic, but a very beautiful place!

Matthew is doing so well--he's relatively healthy, he's happy, he's learning and understanding, he's moving, and he's communicating.  We are so excited about how far he's come.  But once in a while, we are reminded we were supposed to go to Italy. It's pretty jarring when it happens. And it happened on Friday as we watched twin 2 year olds running around at the fish fry at church. We were reminded that though Matthew is high functioning in comparison to many other kids with chromosome disorders, he's still developmentally delayed and way behind where his typically developing peers are today. 

We landed in Holland, and may always be there with Matthew.  Thankfully Holland is a beautiful place to be.

Joyful Life

In the past week leading up to Matthew's birthday, we have been reflecting back over his journey thus far.  Like a movie, I can still see the more dramatic scenes in my mind-- the on call pediatrician showing us his hands with no thumbs just hours after he was born, waiting for the neonatology rounds the mornings after the long nights at TCH, the radiologist telling us about his malrotated intestines, watching him scream bloody murder when he ate, the hours and hours in the pediatrician's office trying to figure out what was wrong, sitting in the surgical waiting room praying he would wake up and breathe after his heart cath, helping to change the bandage on his head and being shocked by the 102 stitches from ear to ear, and the 5 nights of hearing him struggle to breathe-- to name a few.

One scene in particular has been on my mind more than the others though.  That first night at TCH, after our 2 day old sweet baby Matthew was hooked up to an IV, an NG tube, all the monitors, and under the blue lights, we sat in the quiet and dark NICU at about midnight with the oncall attending neonatologist.  In a hushed voice, she spent 30 scary minutes going down the laundry list of all of the things that could be wrong with Matthew, some which we knew and others which we feared.  From her list, it sounded as if Matthew might be in for a life of unimaginable misery and pain. It was horrific. We sat there stunned.  We cried.  We prayed to God to take Matthew if he was destined for the life of misery that we had just heard. 

We are grateful beyond belief that God answered our prayers-- he blessed us with Matthew here on earth, and Matthew's life, though dramatic at times, has been full of joy!  I will never forget that darkest night, and it serves as deep contrast to the beautiful and joyful life we live with Matthew every day.  Some of the beautiful scenes from Matthew's journey so far have also been swirling around my head this week-- watching him roll over for the first time, holding his bottle, sitting up, crawling, eating independently, drinking from a sippy cup, signing 'dog', saying "ma-ma", giving kisses and head bonks, chasing after his siblings, walking with his walker, his squinty grin,  laughing when we kiss his belly, playing peek-a-boo barn, digging through cabinets and drawers, standing in his crib, playing with his toys, and even getting huffy about at being told 'no'. 

Thank you, God, for Matthew's joyful life! 

Go Texan Day

We love the rodeo here in Houston, and celebrate the start of the Houston Livestock Show and Rodeo with 'Go Texan Day', where you dress in your favorite western wear. Yee-ha!

Our cowgirl.

Jackson only would wear the pearl snap shirt and boots if we let him take the jump rope.

2nd Annual RMH Meal

Yesterday was the second year I've taken the pay-it-forward dinner to the Ronald McDonald House on Ash Wednesday. I vividly remember how much it meant to me to find dinner at the RMH during one of the long days at TCH and I am so very thankful we are in a spot now that we can pay the kindness forward.

Yesterday afternoon as I began preparing the double batch of crawfish etouffee, I was entertained by the antics of Matthew as he opened all of the cabinet doors in the kitchen and rearranged my pots, pans and tupperware.  I just can't believe how far he's come!  And the entire experience yesterday was a big reminder of that.

As I arrived at TCH, I was reminded of our very first trip there, almost 2 years ago, with our 2 day old baby.  I remember walking through that same parking garage, cradling Matthew in my arms, and praying that he would be okay.  Without hesitation yesterday, I hit the "4" on the elevator to take me to the NICU floor, which houses the RMH.  I don't think I'll ever forget how to get there, it was etched in my mind over those original 8 days at TCH. 

As I served dinner to the parents of the children staying at TCH last night, I saw in their faces what must have been in ours in those days and nights.  Exhaustion, fear, resolve, and strength.  And when they asked, I was proud to tell them why I was there last night-- to celebrate my sweet baby Matthew's 2nd birthday.  Someone did this for us when we were here with Matthew, and now that we have come to the other side, we want to do this for you.  And yes, Matthew is doing so very well! 

I heard the stories of their children and their journeys-- the baby girl with a rare disease who has been in the NICU for 4 months with failing kidneys, the 3 week old little boy in the NICU with RSV on a breathing tube, the 4 year old in the PICU recovering from a kidney transplant, the 14 year athlete with cardiomyopathy on the list for a heart transplant.  My heart ached for these children and their parents, who's journeys are different than ours, but we can see a bit of Matthew in them. They share the same nephrologist, or are on the same floor that we've stayed at, or yes, we know how scary it is to see a machine breathing for your child. 

Last year, I left the RMH on a high. It was really a reminder of how we were turning the corner.  And this time, though it reminded me how far we've come, I left with a heavy heart.  Heavy for those parents and those children.  And also reminded that though we've turned a corner, and Matthew is doing so very well right now, we might someday turn another corner.  It might not always be as good as it is now.  I'm very grateful for the right now!

I awoke in the middle of the night with all of this on my mind.  I was thankful to be in my bed, not a RMH bed, or an uncomfortable metal chair in the PICU, or the recliner in the NICU, or the pull out couch on the 15th floor.  I prayed for a long straight away for Matthew and that all of those families at TCH are able to turn the corner very soon.  

God bless the Ronald McDonald House for providing comfort and care for those families in need.  We are thankful for the RMH for giving us those things when we needed them, and thankful they gave me the opportunity last night to pay it forward, albeit in a very small way.

Big pot of etouffee and rice, served with salad, bread and king cake.
Easy to make in bulk, and meatless for Ash Wednesday.

My Smiles

The things that are making me smile--

-Matthew has begun to play with the toilet paper on the roll.  We will find it all over the floor and into the hallway.  I love seeing him doing something so typical.  And he's been doing a lot of little typical kid things these days-- like getting on his tip toes to look into drawers and shaking his head 'no' when we tell him it is bedtime.  Every time it makes me smile.

 -Jackson was riding home in the back seat of the car last week and he made my heart melt, and then laugh out loud in a matter of seconds. He says "I love you" (Ahhhh), pauses and finishes his statement "grappling hook" (Oooh).  He does love his grappling hook, which is just a bungee cord but he connects it to his jeans like a grappling hook from Star Wars.  Now Darren and I will randomly say "I love you, grappling hook" and smile.
-We took Alyssa and Jackson to see Star Wars Episode 1 at the movie theater, and Jackson almost fell out of his seat laughing at the trailer for the upcoming 3 Stooges movie.
-Alyssa's softball team is a bit hard core for 6 year olds in my opinion, with 3 practices scheduled last week. But I do love watching her out in the field, glove on hand, softball ready.
-Yesterday Jackson came downstairs after quiet time with pen lines all over his face, arms, and belly. When I quizzed him about them, he told me he was drawing his bones.   

-Darren's been running, and running, and running the past few weeks in preparation for the March 3 marathon.  I've been especially impressed that he can run 20 miles and can still take on the rest of the day without complaint of aches. Very impressive.

And making me smile, reflect, and rejoice-

-Matthew's 2nd birthday is in 5 days!  Many times I feared that we wouldn't see his first birthday and here we are almost to his 2nd!  Thanks be to God!

Mundane -> Wonderful

I have always viewed drying my hair as a mundane task.  That is until Matthew made it one of my favorite tasks, something I look forward to every day.  As soon as he hears my hair dryer kick on, Matthew crawls into the bathroom. He first comes to get my hairbrush, so that he can brush his hair.  As he brushes his hair, he waits with anticipation for me to shoot the warm air on his face.  As soon as I point the dryer in his direction, he jerks in surprise for a moment, and then he breaks out in the cutest Matthew grin.  After we do this for a few minutes, he'll crawl over to me saying 'ma-ma-ma-ma' and pull up to standing so we are face to face (while I'm sitting on the floor) and he moves in with his mouth wide open for a big slobbery kiss.  I love it!

A snippet of our hair drying routine.

Super Baby

The anesthesiologists at the hospital where Matthew is scheduled for his hand surgery have some major concerns about Matthew.  With his throat anomalies and his bad reaction to anesthesia at his heart cath, they believe that Matthew is a high risk case.  After hearing this, I pointed them to his ENT and the notes from his previous trips to the OR in hopes to allay their fears.  

What I wanted to explain to them is that Matthew is Super Baby.  He does have a small airway, and has struggled with croup (after falling off the bed and breaking his nose), but he won't need a tracheotomy because he will fight through everything to get air. I witnessed it last April.  He does metabolize anesthesia slowly, but he always comes out of it.  I've witnessed it 6 times, after each surgery.  He's had a heart that was failing, but he is healed.  His skull was cut from side to side, and almost bled out, but he came home 3 days later.  His intestines were twisted, and he didn't drink for 5 days, but he is healed.  

I may be overly optimistic about Matthew and his ability to overcome all obstacles, but he hasn't given me any reason not to be. And I pray that is the way it will always be.  Matthew is Super Baby, taking on the scariest of scary things, and coming out the other side victorious and stronger.

Super Baby - Halloween 2010

Food Bill

I'm shocked by how much fruit we go through in a week now that all 5 of us are eating table food.  In 5 days, we go through--10 to 15 bananas, 10 to 15 apples, 6 to 8 pears, 3 big bunches of grapes, 3 to 4 pints of blueberries, and  3 to 5 pounds of clementines.  We went to Costco to buy fruit in bulk, and I was still at the grocery store 4 days later...and that was just for fruit.  Makes me wonder (with a little fear) how much our grocery bill will be in 10 years!

Less than 5 days worth of fruit for our household.

Struggle

I so badly want to help my kids avoid the bad (or hard) parts about life, but know that to be successful, productive members of society, they need to struggle, to figure some things out on their own, to succeed or fail independently.  I feel as though I do a pretty good job of doing this with Alyssa and Jackson (maybe I just think I do though), but I'm coming to the conclusion that this is going to be a challenge for me with Matthew. I've been watching him struggle from the beginning, and it hurts my heart to not be able to help him.  So when I can help him, I want to!  But I'm realizing that I may be doing him a disservice, or even hindering his forward progress, by helping him in certain instances.  I expect that striking a balance between helping him and pushing him will be an ongoing challenge for quite sometime.

Irony

2 years and almost 9 months ago, we were driving home from Disney World (this trip) when Darren and I decided it was time to add "Tres" to our family.  We had just spent a week with 6 adults, two 8 year olds, two 5 year olds, our 3 and a half year old and our almost 2 year old.  After trying to accommodate wants and needs of the wide range of ages (e.g. the older kids wanted to ride the rides, while the younger kids wanted to see the shows and meet the characters), we decided that instead of waiting the year we had originally planned to add to our family, we wanted our kids closer in age. That way every day wouldn't be our Disney World.  In an ironic twist, we got pregnant with Matthew, who with his 4q chromosome duplication is developmentally delayed, and now we are having to accommodate the wants and needs of the ages we would have had if we had stuck with our original plan.  Oh, the irony.  Again, I plan and God laughs. 

Every day is our Disney World. It's crazy and wonderful!

Dumb

I recently read an article that asked "Do you think that you are dumb or do you think that you are smart?"  The premise is that if you think you are smart, you likely don't know what you don't know (and therefore are not as smart as you think you are).  If you think you are dumb, you likely do know what you don't know (and therefore are really the more knowledgeable).  

If we had stopped at 1 kid, leaving Alyssa an only child, I would probably have felt like a pretty smart parent.  Now that we have 3, I can say that I am a dumb parent.  I am reminded almost every moment of every day that there is so much that I don't know about parenting, about children, about life, and the such.  I am continually humbled by our 3 very different children.

I'm not sure how we can have 3 polar opposite children, but we do.   Some differences might be a function of age, but some appear to be personality.  Examples:

"Have a good day!"
- Alyssa hears "have a good day" and says "I will make it a good day."  She works at it. 
-Jackson is asked "do you want to have a good day or a bad day?" and he answers "a bad day".
-And unless recovering from major surgery or currently throwing up, every day is a good day for Matthew. 

School
-Alyssa loves school, and is joyful on school day mornings. We pass by her school on the weekends, and she'll say "Hi school, see you Monday!"  She loves school and school work.
-Jackson says he 'hates' school.  Every morning he asks "is today a school day?" If the answer is "yes", he'll moan and complain.  He'd rather laugh, run, and play all day.  Though he does seem to enjoy school once he gets there.
-Too early to tell how Matthew will feel about school, but he takes on every day, every task with his sweet disposition and strong will.  I hope that continues.

Difficulties
-If Alyssa can't do something, she tries a few times and then asks for help.
-If Jackson can't do something, he tries once and gets frustrated (either low level "ugh" or high level flip out). I hope this is a phase.
-If Matthew can't do something, he tries a few times, bangs on it a second and then gets distracted and does something else. 

Their Personalities
-If Alyssa was a Care Bear, she'd be mix between Friend Bear and Smart Heart Bear.
-If Jackson was a Care Bear, he'd be a mix between Laugh A Lot Bear and Grumpy Bear.
-If Matthew was a Care Bear, he'd be Tenderheart Bear and Sweet Sakura Bear.
(For a description of the bears, click here.)

They are so very different.  I'm working to be a competent parent to these 3 great kids, and I worry about all 3 of them for very different reasons.  I pray that their teachers, their friends and everyone that they come in contact with will appreciate them for the unique beings they are.

Cannot Envision

As we are coming upon Matthew's 2nd birthday, I've been thinking about how much we've learned in the past 2 years.  Goodness, the learning curve has been great, and the journey a bit rocky, but it's been amazing.  I think back to about 2 years ago and marvel at my naivety.  Oh, the things I didn't know! 

When I think about what we have learned since Matthew's birth, I wonder what the future holds for us, for Matthew.  When Matthew was a few months old, I couldn't imagine what he would be like in a few short months. I used to sit in the waiting room at OT, wondering if Matthew would look or act like the other children in the waiting room.  Then when he was a year, I could imagine a few months at a time, but couldn't imagine what he would be like when he was 2 years old.  And now that he's almost 2, I can say that I can imagine Matthew at 3 years old.  I can imagine a year from now!  I imagine he'll be walking, and talking, and maybe going to PPCD.  

But I can't imagine him at 4 years old, not yet anyway.  I was sitting at Jackson's tball practice this weekend and I wondered if Matthew would ever be able to play sports, run like the other kids, or throw a baseball. I just can't imagine Matthew at Jackson's age, either chronological or developmental.  I need more data points (to see Matthew continue to grow and develop) to imagine further and further in his future, our future.  

Venting

In my St. Francis Prayer post, I was frustrated with the blanket statements that strangers sometimes say when seeing Matthew-- "oh, be glad he doesn't walk (or talk or read)".  Don't read too much into that post and think that I don't participate in parental venting, I do.  It was just this blanket statement that rubbed me wrong.  I wasn't frustrated with the parental venting about the parts about parenting that plainly stink.  I completely understand, agree with, and participate in that venting.  

Though we all should be grateful for our kids all the time, some moments and some days, it just isn't going to happen.  Some moments just aren't good, and sometimes a little time and perspective might allow us to reframe those moments and make us appreciate them, but sometimes not. 

I'm not a fan of the whining, the tantrums, the mouthiness, the bickering, and the like that my kids sometimes do.  Right now, Jackson is not managing his emotions well.  He gets easily frustrated and flips out. I cringe every time he puts on his shoes because 9 times out of 10 he'll freak out that they aren't tight enough, and it makes my blood boil.  And Matthew is hating to be confined, which is making putting him into his car seat, or going to the grocery store, or out to eat with him a complete nightmare. I miss my perfect little companion. And Alyssa is getting sassy, like a teenager.  Oh, it makes me fearful for her teen years. 

I appreciate that these things might be good in the long run, or developmentally appropriate, or not unusual for their age, but these things still stink.  After the ugly moments have passed, I may sometimes be able to reframe the moments-- like Matthew is hating to be confined because he's learning to walk!-- but it doesn't make it easier to handle in the heat of the moment. 

Normal Life

Right now is the most 'normal' our lives have been since Matthew's birth.  We relish the 'normal', the every day, which isn't all rainbows and sunshine, but is beautiful just the same.  

What's going on here at the Hoy House these days:
-Alyssa started softball practices and Jackson started t-ball practices.  Yesterday was our first little taste of how hectic life is going to be when all the kids are in activities.  Alyssa went to Girl Scouts, and then straight to softball.  Darren dropped Alyssa at home after softball, and picked up Jackson for t-ball.  Whew!
-Since Darren is a huge Cubs fan and I'm a huge Astros fan--both Alyssa and Jackson's team names are... the Cardinals (of course).  Darren and I have decided not to buy the team shirts and just wear red when we root for our little red birds.
-Matthew has said the word "bye" a few more times.  It wasn't just a fluke!
-Jackson has been struggling to manage his emotions of late. I feel like this is an ongoing battle we have.  For a while he gets better (less easily frustrated) and then he looses it again.  This week is looking better than last week, so I hope that he is moving into a new phase.
-I've come to term with losing my 2nd class this semester (and now working just to pay the nanny).  This semester is going really well.  And I've had a good time with the boys during that extra hour and enjoy picking Jackson up from school on time.
-Softening the blow too, I just was offered classes for the Fall, and it appears to be feast or famine.  I was offered 3 courses.  2 sections of Intro and 1 section of Marriage and Family, like I taught in the Fall, but this time all on the same days, back to back.  Although it means more grading, and being a bit hurried on Mondays and Wednesdays to get Alyssa and Jackson from school, I'm thrilled and looking forward to it.  I love what I do!
-Darren has apparently lost his mind and decided to run a full marathon (26.2 miles) in early March.  He's running like Forrest Gump through the month of February to train.
-We are making plans for Matthew's upcoming birthday and his hand surgery.  Praying he can get and stay well for both!

Alyssa's first day of softball

Matthew pushes this toy all around, every day

Jackson's favorite toys lately have been his Legos. Unfortunately they also cause his frustration too.

My Hoy boys riding the scooter.  This must be good for Darren's training! And even if it isn't, look at the smiles on those faces!

St. Francis Prayer

Every couple of months I hear a statement like these:  "Oh, I remember when my kids didn't talk, it was delightful. I wish that were still the case."  or  "Oh, be glad your little one doesn't walk, they just get in everything when they do."

Usually they are looking at a baby, not doing whatever they were wishing about.  Sometimes it is walking, or talking, or reading.  Whatever it is, these comments have always rubbed me a bit rough. I've heard these statements since Alyssa was little.  I've always been a big believer that every developmental stage has joys and challenges.  Sure, when kids learn to walk they start getting into everything, but they also can walk to the car on their own!  When kids learn to talk, they might talk your ear off, but they also are now able to communicate their wants and needs with less frustration!  When kids learn to read, you can no longer say to your beloved "do you want I-C-E-C-R-E-A-M?" without your little one saying "Wo-hoo! Ice cream!", but they can now read you a bedtime story!

With Matthew, these statements really rub me wrong.  I hear this kind of statement and start talking in my head: "Oh, you don't appreciate that your typically developing child can do something that is developmentally appropriate? You don't have to spend hours upon hours in therapy to get him/her to talk (or walk)? You don't pray every night that he/she will one day be able to say a sentence (or run down the street)?  You didn't spend countless hours with your little one, saying 'ma-ma' over and over again, exaggerating your facial movements, to the point that people in the doctor's waiting rooms must have thought you were insane? Must be annoying how your little one does all that talking (or walking)!" But I don't say anything out loud, usually.

I heard a similar statement last night, and I did say something, nothing big and nasty like the above, but a quiet "You only wish that because they can, if they couldn't, you wouldn't."  I should have just kept my mouth shut. One of my New Year's resolutions was to pray the prayer of St. Francis everyday.  

Lord, make me an instrument of your peace.

Where there is hatred, let me sow love.

Where there is injury, pardon.

Where there is doubt, faith.

Where there is despair, hope.

Where there is darkness, light.

Where there is sadness, joy.

O Divine Master,

grant that I may not so much seek to be consoled, as to console;

to be understood, as to understand;

to be loved, as to love.

For it is in giving that we receive.

It is in pardoning that we are pardoned,

and it is in dying that we are born to Eternal Life.

Amen.

I didn't do a very good job of living it last night.  Everyone complains about the everyday stuff. We aren't always at our best and appreciate what we have.  I know I am not, and don't.  As hard as Matthew has to struggle to walk and talk, he has it a lot easier than many kids.  Kids whom will never learn to talk or walk.  Some who didn't get the chance to celebrate their 2nd birthdays. I don't always appreciate that, just as this mom didn't appreciate the beauty of her kids' very typical development.  I need to work on everything in the prayer, but last night just reminded me that I really need to work on being more understanding, and less worried about being understood.

A Red Letter Day

Matthew had a red letter Friday.  He added some new tricks to his bag.  When he and I were leaving his nanny (Paula) to go get Jackson at school, Matthew waved (as typical) and then said (very clearly) "bye".  Both Paula and I stopped in our tracks and looked to the other to make sure we weren't imagining things.  If it was a coincidence, it was an amazing one.  Hopefully he'll do it again soon so we'll know it wasn't.  Then that afternoon, Matthew started making the "guh" sound.  Another new sound! So now he has "b", "m", "d", and "g" for consonants, and "a", "u" and "i" for vowels. And to round out his red letter day, he stood unsupported for 3 seconds.  This is a vast improvement to the microseconds he was standing on his own up until now.  Matthew is getting stronger and more vocal by the day!  What an amazing blessing!

Googling

About every 4-6 weeks, I do a Google search on "4Q chromosome duplication" or "Trisomy 4Q".  I'm looking for anything new--maybe a research article by a geneticist or a blog post by a parent of a 4Q child.  I haven't found much new, past the first few searches I did almost 2 years ago.  No sign of new cases like Matthew's. As far as we know, Matthew is still 1 of 2 in the world with his diagnosis.  I've looked at the 4Q chromosome genetic map, researching each of the known genes that reside on the area of the chromosome that Matthew has duplicated.  I'm armed with lots of information, but none of this has made any difference.  Matthew is who he is, with the genetics that he has, writing his own story.  

Last night, as I was re-reading some of the articles I had read almost 2 years ago, I was moved to tears.  The medical research indicates that the larger the duplication, the more severe the symptoms.   Matthew has one of the largest known duplications of 4q.  But he is defying the research--he is doing so well!  His journey hasn't be an easy one. He has to work very hard for little gains. He catches seemingly every bug.  But he is almost walking, he's almost talking, he signs, he eats on his own, he crawls, he plays, and he laughs.  Well beyond what I would expect from reading the research.  Our sweet baby Matthew continues to defy the odds.  Thanks be to God!

Our sweet baby Matthew.

T-1 Week Until--- Nothing

Matthew was scheduled for hand surgery 1 week from today at the Texas Scottish Rite Hospital, where they would take his index finger and place it in a thumb position (his right hand).  The catch- he has to be well for the 2 weeks before the surgery.  I've been hoping, praying and doing everything in my power to keep him well.

But I can't put Matthew in a bubble and Saturday his nose started running.  Sunday he started sounding a little congested.  I was hoping I was imagining things.  "Maybe it is nothing.  Let's see if it passes." Well, it didn't.  Now Matthew is sick, again. It means that we will have to push back the hand surgery, yet again.  He was well almost 4 weeks in a row-- I think it was a record.  And now we'll have to work to keep him healthy for the next date, whenever that might be.