...and the other reason I can't sleep. As special as April was with so many of our family member's birthday's and Trey's too, I am relieved for it to be over. It seemed like every time I wrote "April" anything, it would remind me of Trey's birthday, his birth and all the many days of waiting, wondering, worrying, hoping and praying. Just thinking about his first couple weeks of life is extremely draining on me and my ever busy mind. Today being the last day of April brings reprieve to very emotional memories associated with this month...only to bring me to May and Mother's Day which opens up another box of emotions for this mama (oh my poor husband, I'm an emotional wreck-haha) *Trey's Birthday hat given to him at Preschool
*Trey picking out of the Birthday box at swim *Trey being sung to at dinner on his Birthday
*A Happy Birthday song from Trey's T-ball team: the Red Firetrucks All our April family birthdays: Auntie Cathy, Aunt Barb, GiGi, Auntie Stephanie, Papa John, Uncle Jake, Uncle Jeff and Treybo (and Granny, 90 years old-not pictured)
Another sleepless night, only this time I know why. Trey and I dropped Drake and Broc off at soccer practice then headed to my mom’s for a visit. To our pleasant surprise, my brothers were there. My mom is having new flooring put in her home so each of us have been busy with our individual projects helping to get her home ready for the install process. I had asked Mike to bring the boys over to my moms after practice to see how much progress had been made. In the meantime, we all had decided to go out to eat so I left a note on my mom’s front door telling Mike where to meet us (his cell phone wasn’t charged). After dinner Mike tells me about an extremely “close call” him and the boy’s had on the ride over to the restaurant and how they were just feet away from being hit by a large pick up truck that had run a red light. I sat numb as he was telling me, inside I was trying to register what Mike was saying and at the same time thanking God for Mike’s alertness and the consequences had he not have been. The entire story and intersection has been running through my head ever since, hence one reason for another sleepless night. I always pray for God to lighten my load, that this is too much for me to handle (I can’t possibly imagine if anything were to happen to another one of “my boys”, Mike included). Tonight has made me remember that our days are numbered, to live one day at a time and live each to the fullest. It has made me think even harder about not focusing on what I can’t control and not to worry so much about the future when in reality tomorrow could be any one of our last days here on earth. Tonight’s “close call” gave me a wake up call on living in the moment… life may not be the party we hoped for, but while we are here we might as well dance!
*the boys were so proud of their "demo" and clean up jobs
I love my job! It seems that every time I go to work something happens that confirms to me that I was meant to be there. This past week, I met Willie, a provisioning agent with Southwest, stocking the back of the plane getting it ready for us and our next flight. As he worked and I waited for the passengers to deplane we had a conversation that again confirmed Trey's purpose in life. He asked about my kids and I asked about his. Willie told me that he was having a really bad day that his truck had broke down and that his wife was bringing his grandson up to work over his lunch hour to cheer him up. I don't remember word for word how it played out but by the grace of God, Trey's story gave Willie an entirely different outlook on his troubles. "There you go again my little angel her on earth, touching peoples lives everywhere you go". Willie shook his head, and said that it was obvious that I was a Christian, and thanked me for our talk. Willie closed the airplane door with a smile on his face...I just know it was going to be a better day for my new friend.
Again this year I chose to raise awareness of Trey's disorder by handing out his blog address and the same little poem. Only this year because Trey's birthday landed on a Saturday, I couldn't give the treats and card to his classmates. As luck would have it Trey had a t-ball game on his birthday this year so I signed up for snacks on this date. The cards and snacks were again given on his birth day, a way to help raise awareness to children and parents whom come in contact with Trey and MPS weekly. If these parents had any questions, they now have access to Trey's story and now not only can they educate themselves, but also their children.
1:34am and I can’t sleep. I want so badly to lie by Trey and talk to him, pray for him, and by some miracle explain to him what his disorder is and in turn have him to remember all I expressed when he awakes. So that whenever he finally does get to the point of asking questions, he will already know all the answers and I won’t have to endure the pain in his sweet little eyes as I trying to explain. I know why I am feeling this way…Trey turned 5 on Saturday and I am alone with my thoughts wondering what the next year for Trey might bring. What will his 5th year of life have in store for him? I know it is all in God’s time and that Treys’ story is already written, but birthdays seem to be a time for me to reflect. I think that instead of lying in bed speculating about something that is completely out of my control, I will stay awake on the computer and write about something fun and positive until I can’t keep my eyes open any longer. Tonight was Treys 5th birthday party. Last October Trey had suggested that everyone at his birthday party dress up like pirates. I thought it was such a cute Idea but never thought that 6 months later he would remember his suggestion. Well he did and even tried to throw a twist into his plan by asking if all the boys could dress up like pirates and all the girls be Cinderella. I was able to convince Trey that many of us girls had already bought our pirates costumes thus getting us out of that expensive and hot (it was 92 degrees today in Phx) proposal. The party was a huge success! Trey was as happy as any little scallywag could be. He loved his cake Grandma Mikki made him, loved all his presents (had such nice manners thanking everyone after he’d open each one) and I could tell he got a kick out of seeing his family and his little buddies dress up. One of the best stories about the party was Broc’s ”gift’s” to Trey. Broc spent this past month planning the event’s that he wanted to take place at Trey’s party. He spent over $50 of his own money buying games and prizes as well as buying Trey his very own gold fish (Trey named his new fish, Jack...Jack Sparrow). Mike and I were so proud of Broc and how he was so insistent on making Trey’s party special. The kids games were separated by big kids and little kids, the prizes were very nice and the organization and patience of Broc made Mike and I extremely proud. But more than that, the compassion Broc displayed for his little brother without a single proposition by Mike nor I blew us away. I asked Broc what had made him want to do all this for Trey and he said because he wanted him to be happy since he had to be sick and visit so many doctors all the time. You can’t teach that level of empathy to an 8 year old. This all being part of the bigger picture for our family and what God has in store not only for Trey, but for Drake, Broc, Mike and I. And like clock work, here is my little angel now…he has once again found his way into our bedroom during the middle of the night. I can now go to bed with a smile on my face as I fall asleep to Trey’s breathing. A huge thank you to everyone who made the extra effort and honored Trey’s little desire by dressing up tonight. Mike and I are so appreciative of your love.
When Mike and I woke up today we found Trey in our bed...again! Trey has a way of finding his way through the dark of the night right between the two of us and into our bed. We both smiled as we wished our littlest blessing a Happy 5th Birthday and began to reminisce about 5 years ago today. Going through the birthing experience for the third time, you'd think it would have been a "walk in the park" for me but this time was different. Not only did my water break, something I had yet to experience with Drake or Broc's birth but Trey came to us via an emergency c-section. Trey was so beautiful, with his prefect shaped head and gorgeous blonde hair, weighing 8lbs 13oz's and being the largest of our three boys we had some huge plans for him but God's were much, much different. Thinking about the past five years and the abundant joy this little angel has brought to our lives brings me to tears, our plan or His, this child was meant to be here and most definitely for a reason. Dear Trey, How can I begin to put into words the eminence amount of happiness you have brought to our family, to our friends and even to complete strangers? Your story is one that had I had a "sneak peek" into would never in a million years thought I would have been able to live through but because of you I am a much stronger person and only because of you have I really, really, really been able to experience the true meaning of faith. You, my precious angel, in your short five years here on earth have taught mommy and daddy more than any person or book could have ever taught us about life, about love and about the meaning of living in the moment. I know that one day you will read this and read how much meaning your life has, what an impact your 5 years have had on so, so many and without a doubt BELIEVE like daddy and I do that you were meant to be here and that your purpose is beyond special...your beautiful blonde curls and big blue eyes that remind so many of an angel was not bestowed upon you by mistake. You are our angel here on earth and every day we thank God for the gift of your life and for choosing us to be given the honor of being your parents. I love you more than you could ever comprehend...Happy Birthday my sweet child, Mommy
March 25, 2010 Before I begin, I have to say, "Thank You Ashley for thinking of Trey and for being the reason for everything Special that was planned for our family!I love you my dear friend, Cami When I say "beyond SPECIAL" I mean nothing less! Our vacation over Spring Break was first class from beginning to end. From the stretch H3 limo, to tickets to any amusement park in Florida, to Give Kids the World Village...beyond our expectations and back. Mike and I truly don't know how our boys will ever be able to go on another vacation without comparing it to this last week...we we're VIP in every sense of the word all thanks to Ashely and Miss Lisa. Thank you Give Kids The World (GKTW), your village is spectacular to say the least! Dick Nunis (Chairman, Disney Attractions)was right when he compared Mr. Henri Landwirth, CEO and visionary behind GKTW to Mr. Walt Disney. Both "lands" just as amazing as the next only Give Kids the World is only for children with life threatening disorders. Picture living out your week inside the Candyland board game...everything bright and fun and wonderful. Mike and I were in disbelief that the people who created this magical place didn't miss a beat. I could go on forever about all that was offered, scheduled,and given to our family during our stay in Florida but would end up writing a book it seriously provided THAT much. (above picture-in front of our Villa at GKTW...check out the adorable Villas across the lake, the entire Village had that look). Trey had such a great time as well as Drake and Broc...when you can eat ice cream from 7:30am to 9pm for free, what child woudn't? Did I mention everything was free at GKTW? To not have a worry and to be given the luxury to do what we wanted in a town that is a family vacationers dream was a blast. We spent 3 days at Disney World (Disney's Magic Kingdom and Epcot), one day at Universal Studios, which included seeing the Blue Man Group (dad and GiGi were there too). and 1 day at Gator Land and didn't even scrape the surface of all that we could have done had we more time. The only sad time for me (other than the 12 hour stomach flu Drake, Broc and I experienced) was to try to calm Trey and his broken little heart each time we had to tell him he wasn't tall enough for a ride. My insides were crushed to see his precious face watch his daddy and brothers as well as children so obviously younger than himself run past Trey and be able to ride rides he was turned away from. I wanted to plead his case for every ride that I felt wasn't too rough that I believed he would be fine to go on...the "mother bear" in me again. Trey's "special wish" was to meet Cinderella and meet her he did, a one on one meet and greet. The only problem was, as many boys do when they see the girl they "love" they clam up. It was the cutest thing, he froze and didn't say a word, just stood in front of Cinderella and shook his head. I was crying to see him get his "wish" granted but so wanted him to talk to the pretty princess...it was oh so cute to see the shy side of Trey (esp towards a girl),maybe I didn't realize how serious his feelings were towards her...haha
That aside, we are so sad to have to "wake up" from the dream but so happy to report that the dream will forever last in our minds and hearts.
My name is Trey. I turned 9 years old this past April. I live in Arizona
with my Mom, my Dad and two big brothers Drake and Broc. At two years old I was misdiagnosed with a life threatening genetic disorder known as MPS VI.
Months of testing and a visit to my new doctor’s in Minnesota brought me
to my correct diagnosis of MPS IV-A. While there was no cure nor treatment
for MPS IV-A the first three years, I was part of a Clinical Trial for my disorder that recieved FDA Approval on Valentines Day 2014. I flew to and from Oakland, CA every Thursday for almost 3 years to receive a five hour infusion therapy.
My prayer is that these trials will help my organs and bones and extend my
life expectancy beyond my original diagnosis. Although I endured 43 weekly
infusions (essentially for “nothing”), I am so thankful that prays were answered and that my weekly travels helped to bring FDA approval of the enzyme replacement therapy of disorder...hoping this will vastly benefit my little body.
Mucopolysaccharidoses (MPS) is a genetic lysosomal storage disease caused by the body's inability to produce specific enzymes. Normally, the body uses enzymes to break down and recycle materials in cells. In individuals with MPS, the missing or insufficient enzyme prevents the proper recycling process, resulting in the storage of materials in virtually every cell of the body. As a result, cells do not perform properly and may cause progressive damage throughout the body, including the heart, bones, joints, respiratory system and central nervous system. While the disease may not be apparent at birth, signs and symptoms develop with age as more cells become damaged by the accumulation of cell materials.
Look out Jonas Brothers…It’s TRIPLE THREAT (okay, so we have a bit too much fun looking through model homes-ha-ha)
“T” is for Trey
look what Trey found amongst his French fries at lunch the other day
WHAT IS MPS IVA?
Mucopolysaccharidosis IVA (MPS IVA, also known as Morquio A Syndrome) is a disorder characterized by deficient activity of N-acetylgalactosamine 6-sulfatase (GALNS) causing excessive lysosomal storage of keratan sulfate (KS). This excessive storage causes a systemic skeletal dysplasia, short stature, and joint abnormalities, which limit mobility and endurance. Malformation of the thorax as well as macrophage dysfunction in the lung likely impairs respiratory function and contributes to sinopulmonary infections. Odontoid dysplasia and ligamentous laxity can commonly cause cervical spinal instability and potentially spinal cord compression. Other symptoms may include recurrent infections, hearing loss, corneal clouding, and heart valvular disease. Initial symptoms often become evident in the first five years of life. Depending on severity of the disorder, age of diagnosis will vary. Many patients become wheelchair dependent in their second decade of life and undergo numerous surgeries to alleviate life-threatening conditions caused by the underlying enzyme deficiency.
The incidence estimates for MPS IVA vary widely, between one in 200,000 live births to one in 300,000 live births. Approximately 400 patients worldwide have been identified and tracked through the International Morquio Organization (IMO) survey. There are already more MPS IVA patients identified through this registry than there are MPS VI patients being treated with Naglazyme worldwide. Based on the number of identified patients to date, the prevalence of patients with MPS IVA appears similar to that with MPS I.
To accomplish great things, We must not only act, But also dream; Not only plan, But also BELIEVE.
My Daddy
I love breathing Trey in when I first awaken - he soothes my aching soul in the mornings....I always touch his hands! Daddy
Please kiss my li'l Mr. Busy,
"He's my little bit of somethin' and my lotta bit of everything."
Love,
Mike/Dadda
Quotes that INSPIRE
"Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." “The Will of God will never take you where the Grace of God will not protect you” When God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly!
Life may not be the party we hoped for, but while we are here we might as well dance! May your Troubles be less,
Your blessings be more,
And Nothing but Happiness
come through your door.
Our suffering can make us more sensitive servants of God. People who have known pain are able to reach out with compassion to others who hurt. If you have suffered, ask God how your experience can be used to help others.
Beautiful One, Just Believe... Waiting may be the single hardest thing we have to do. In the Bible, waiting is closely associated with faith. Sometimes the words are used interchangeably. While we may not like it, waiting is a necessary part of the Christian life. What God does in us while we wait is as important as what it is we are waiting for. Waiting is not easy. It may bring pain. It will try us and test us. It demands patience. It exacts a price… When our eyes are on the sunshine, the rain doesn't seem so bad. When our eyes are on the rain, even the smallest drop seems like a storm.
THE POWER OF PRAYER. I believe that God only gives three answersto prayer:
1. "Yes!" 2. "Not yet." 3. "I have something better in mind."
God still sits on the throne.You maybe going through a tough time right now but God is getting ready to bless you in a way that you cannot imagine.
Life is too short to wake up with regrets.. So love the people whotreat you right.. Forget about the ones who don't. Believe everything happens for a reason. If you get a second chance, grab it with both hands. Ifit changes your life, let it. Nobody saidlifewould be easy, they just promised it would beworth it. Still wondering why I’m here
Still wrestling with my fear
But, Oh, He’s up to something
And farther out I go
I’ve seen enough to know
That I’m not here for nothing…He’s up to something
My wish for you
Where there is pain,
I wish you peace and mercy.
Where there is self doubting,
I wish you a renewed confidence in your ability to work through it.
Where there is tiredness, or exhaustion,
I wish you understanding, patience and renewed strength.
Where there is fear,
I wish you love and courage.
peace.
it does not mean to be in a place
where there is no noise, trouble,
or hard work. It means to be in
the midst of those things and still
be calm in your heart.
WITH THIS PAIN
I don’t see the reason or rhyme
for this mountain I must climb.
Father, I don’t understand,
so I’ll lay it in your hand.
So with this pain I am feeling now,
to your wisdom I will bow.
And accept you know what’s best,
so in your peace I can rest.
For the Word has made it clear,
how we’ll always find you near.
So all I ever need to know
is that with me you will go.
The UltimateQuote of the Day
"Whatever you give a woman, she will make greater. If you give her sperm, she'll give you a baby. If you give her a house, she'll give you a home. If you give her groceries, she'll give you a meal. If you give her a smile, she'll give you her heart. She multiplies and enlarges what is given to her. So, if you give her any crap, be ready to receive a ton of %$*&^."
AMEN!
HAPPY MOTHERS DAY
O Sovereign LORD! You have made the heavens and earth by your great power. Nothing is too hard for you! Jeremiah 32:17
When is the last time you prayed for something "impossible"? We don't need to test God, but he does want us to have great hope in his ability to work miracles. So pray big today.
"No matter how deep the pit, God is deeper still."
Rejoice?? Are you kidding??
I don't know about you, but I would much rather grow and gain maturity by watching a video, attending a conference, reading an inspiring book... anything but trials and testing.
But the truth is that real, pure, deep joy is the fruit of tested and patient faith. The ability to rest when the wind picks up around us comes from having already been through a few storms. Joy is not the first word that comes to mind in the midst of trials. But God promises us strength and He promises to help us get through it. He is indeed perfecting our faith and that alone is reason enough to rejoice!
Wait patiently for the LORD. Be brave and courageous. Yes, wait patiently for the LORD. Psalm 27:14
Sometimes our fears creep in because it seems like God is taking too long to answer us. Is he out there? Hold on--he will answer you, so you must trust him while you wait.
Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33
God doesn't promise to protect us from problems on this earth. Instead he promises to give us the courage to face our problems with his strength.
If it were easy I would never depend on the Lord.
When darkness overtakes the godly, light will come bursting in. They are generous, compassionate, and righteous. Psalm 112:4
When you belong to God, there is no need to be afraid of dark times that may sweep over you. For God is our sun, our light to guide us through to the end.
It's amazing how the good things of today become when you are unsure of the things of tomorrow.
What good would it be if we felt pain each day but never learned from it? And what good would it be if we sailed through life without experiencing the joy that comes after the sorrow?
There can be no growth of character and depth of personality if our lives were perfect. Experience, and everything that comes with that - fear, failure, success, confidence, sorrow, joy - is what builds our heart and deepens our soul. We learn to move beyond our pain and sorrow to grow in areas and directions we would never have imagined.
And we learn to trust God and stand on His word that says, "weeping may last through the night, but joy comes in the morning."
Life is confusing. It can be hard to know which way to go on the pathway of life. Thankfully, God offers us his wise leading and counsel, so we don't need to be anxious.
All our April family birthdays: Auntie Cathy, Aunt Barb, GiGi, Auntie Stephanie, Papa John, Uncle Jake, Uncle Jeff and Treybo (and Granny, 90 years old-not pictured)
