Hope isn't something I felt since Massimo had been diagnosed with Scoliosis. It all started with the Dr. at Children's telling me his curve was at 43 degrees and we should "start thinking" about treatment! When he showed me Massimo's xray and I saw the curve, I became hopeless. He told us to come back in 6 months and see where he was then.
I knew this wasn't right. I went on the Internet and found out about casting as an option...I starting having a glimmer of hope for my boy.
After our appointment at Shriner's with Dr. Sturm, I started to get a tiny more hopeful but still had my doubts of whether or not this would make Massimo's spine straight. After Massimo's 1st cast, we were down from 43 to 32! Hope started to grow in my heart. We had so much support and prayers from our family and friends! This also gave me hope. After Massi's second cast, he developed a rash and a cough. He had to wait 2 months before getting cast #3....the hope started to diminish. Finally, He was casted for cast #3 and had improved to 25 degrees. Massimo recently received his 4th cast in May and he was down to 11 degrees!!! I know once you get to 10 or below, you may be closer to being cast free!!! Hope began to rise again! We will find out his numbers from cast #4 on aug. 9 which will mark Massi's one year anniversary of being casted.
BUT, what has heightened my hope is a little boy named Jackson Miller!!! He has been casted for 19 months and has reached the dream that all of us moms want to achieve for our babies.....the end of casting.....a straight spine!! Chrissy, his mom has always been a pillar of strength for me through our journey with casting. I am beyond happy for her and Jackson! This huge milestone has raised my hope to where I see the end for Massi and casting! I dream of the day we hear,"This is his last cast" My heart is filled with hope that Jackson will someday speak about his journey with Scoliosis and encourage other parents and kids to go with the casting option. Of course I envision this with Jackson wearing a Superman shirt :)!! Thank you Jackson for giving me more hope than I have ever had for Massimo!
Wednesday, June 29, 2011
Friday, June 24, 2011
Letter to a Superhero
Dear Jackson,
Today I write to you with such pride and joy. Today I celebrate the amazing little person you are. Actually, there is nothing little about you. You have a huge heart; you love all of life and you touch the souls of those who come into your presence. You have a huge spirit; you ignite some kind of brilliance when you're in the room. Your energy, charisma and spark bedazzle me....everyone. You have a larger- than -life handle on all of the challenges that God has gifted you with and have done so with a grace and poise so large, I often question that you are only a small child.
You are a teacher. Through the last 19 months...half of your life, you have taught Mommy, Daddy, sissy and Bubba...all who have witnessed and pulled for you along this battle, what it means to have courage. You have shown us what it means to be brave. You have exemplified the human spirit and surpassed expectations. You have given us a new window through which to view life. You have changed how we see pain, struggle, disappointment and difficult times. Because of your tenacity and superior capacity to accept what is and experience life as God has planned for you, we are better people. We aspire to be like you, my brave one.
Yesterday was a miraculous day. It was a gift. It was an answered prayer...but you knew that, didn't you. In the bliss of the bath the night before, in the high energized laughter and alertness with which you entered your cast day...#9...in the calm and serene presence of your being through the waiting and the chaos, you knew. You were telling me through your joy, "Today is the day!", and I was apprehensively listening; afraid of lifting my spirits to the good news of the day, mindful of what the doctor could deliver in his post-op report, giddy with anticipation to hear what we wanted to hear and were afraid to let ourselves embrace, I was listening. You knew.
You feel pain and soreness and fatigue today from what is the total of all sums: all of the surgeries, the pokes and prods, the early rising mornings and the restless post-cast nights. What you feel today is the symbolism of what Daddy and I have felt for you since your diagnosis in September of 2009: a guttural punch lasting far too long, taking our breath away and leaving us paralyzed with fear and sadness. I watch you struggle today; the way you can hardly move with ease...the moans you made as you tried to find comfort in your sleep last nite, the inability to maneuver and manipulate the way you did two days ago...your tears as you ache and express how your cast is hurting you. These struggles...these post cast-day blues, of which you've never endured before in all of the past days( and I,m shocked and amazed you haven't), I think are a message to us. It is as if God is giving us this pain and frustration to remind us of what we are grateful for. That after this 12 week road ahead, there will be no longer, these kinds of days, my sweet warrior. Today is a gift and the days after....for they will serve to give us perspective and fortitude. They will give us empathy and compassion for our friends who will still endure. They will give us humility and hunger for the turn in the road that lies ahead. They will not last long and THAT is the miracle.
Congratulations my sweet boy! This is your last cast. I can't even catch my breath as I write it. I say it and yet it doesn't ring loud enough to express my elation and relief. I wonder if as you held my hand while we rested in your bed last nite...trying to find solace from the storm, did you hear me weep? Your quiet, sleeping breathing was my reprieve. Your tiny fingers wrapped around mine was a whisper to me that it was over. That THIS part, was over. Though you were clinging to me for safety and comfort, it was I, my brave boy, who was refusing to let go of you. I craved your still. I cried for your story. I celebrated in silence, nurtured by my own salty tears, that you have overcome the odds..the obstacles and the agony.
Your story is one I read with awe and inspiration, Jackson. As it unfolds and lights the way for others...as it becomes a life handbook for your family and friends to follow and learn from, I am filled. I am filled with hope. I am filled with a purpose to continue to support you and guide you, protect and provide for you, advocate and communicate for you and those who fight this battle of Infantile Scoliosis alongside of you. Though the noise of the battle is not over, the fight of the soldier is intact. Remember...you are a superhero. You have special abilities and powers of strength that conquer what evils lurk. You have an uncanny ability to fly and leap and soar where no others are able. You have the responsibility to pave the way and lift others from the shaky ground in an attempt to bring them to a much safer and rested valley. I cannot wait to watch you fly! ...and I will stand along the sunset, following your beautiful body with your cape bellowing behind you as you fade away into the horizon, and I will say with love, "That is my son."
I love you.
Mommy
Today I write to you with such pride and joy. Today I celebrate the amazing little person you are. Actually, there is nothing little about you. You have a huge heart; you love all of life and you touch the souls of those who come into your presence. You have a huge spirit; you ignite some kind of brilliance when you're in the room. Your energy, charisma and spark bedazzle me....everyone. You have a larger- than -life handle on all of the challenges that God has gifted you with and have done so with a grace and poise so large, I often question that you are only a small child.
You are a teacher. Through the last 19 months...half of your life, you have taught Mommy, Daddy, sissy and Bubba...all who have witnessed and pulled for you along this battle, what it means to have courage. You have shown us what it means to be brave. You have exemplified the human spirit and surpassed expectations. You have given us a new window through which to view life. You have changed how we see pain, struggle, disappointment and difficult times. Because of your tenacity and superior capacity to accept what is and experience life as God has planned for you, we are better people. We aspire to be like you, my brave one.
Yesterday was a miraculous day. It was a gift. It was an answered prayer...but you knew that, didn't you. In the bliss of the bath the night before, in the high energized laughter and alertness with which you entered your cast day...#9...in the calm and serene presence of your being through the waiting and the chaos, you knew. You were telling me through your joy, "Today is the day!", and I was apprehensively listening; afraid of lifting my spirits to the good news of the day, mindful of what the doctor could deliver in his post-op report, giddy with anticipation to hear what we wanted to hear and were afraid to let ourselves embrace, I was listening. You knew.
You feel pain and soreness and fatigue today from what is the total of all sums: all of the surgeries, the pokes and prods, the early rising mornings and the restless post-cast nights. What you feel today is the symbolism of what Daddy and I have felt for you since your diagnosis in September of 2009: a guttural punch lasting far too long, taking our breath away and leaving us paralyzed with fear and sadness. I watch you struggle today; the way you can hardly move with ease...the moans you made as you tried to find comfort in your sleep last nite, the inability to maneuver and manipulate the way you did two days ago...your tears as you ache and express how your cast is hurting you. These struggles...these post cast-day blues, of which you've never endured before in all of the past days( and I,m shocked and amazed you haven't), I think are a message to us. It is as if God is giving us this pain and frustration to remind us of what we are grateful for. That after this 12 week road ahead, there will be no longer, these kinds of days, my sweet warrior. Today is a gift and the days after....for they will serve to give us perspective and fortitude. They will give us empathy and compassion for our friends who will still endure. They will give us humility and hunger for the turn in the road that lies ahead. They will not last long and THAT is the miracle.
Congratulations my sweet boy! This is your last cast. I can't even catch my breath as I write it. I say it and yet it doesn't ring loud enough to express my elation and relief. I wonder if as you held my hand while we rested in your bed last nite...trying to find solace from the storm, did you hear me weep? Your quiet, sleeping breathing was my reprieve. Your tiny fingers wrapped around mine was a whisper to me that it was over. That THIS part, was over. Though you were clinging to me for safety and comfort, it was I, my brave boy, who was refusing to let go of you. I craved your still. I cried for your story. I celebrated in silence, nurtured by my own salty tears, that you have overcome the odds..the obstacles and the agony.
Your story is one I read with awe and inspiration, Jackson. As it unfolds and lights the way for others...as it becomes a life handbook for your family and friends to follow and learn from, I am filled. I am filled with hope. I am filled with a purpose to continue to support you and guide you, protect and provide for you, advocate and communicate for you and those who fight this battle of Infantile Scoliosis alongside of you. Though the noise of the battle is not over, the fight of the soldier is intact. Remember...you are a superhero. You have special abilities and powers of strength that conquer what evils lurk. You have an uncanny ability to fly and leap and soar where no others are able. You have the responsibility to pave the way and lift others from the shaky ground in an attempt to bring them to a much safer and rested valley. I cannot wait to watch you fly! ...and I will stand along the sunset, following your beautiful body with your cape bellowing behind you as you fade away into the horizon, and I will say with love, "That is my son."
I love you.
Mommy
Tuesday, June 21, 2011
Summer Dreaming
Ahhhh finally a week to enjoy my sweet boys all to myself. This has been a first for our family this summer. We have been blessed to have extras with us since the last week in May, but I have to say it is nice to finally have a little time to connect with my boys and settle into a summer routine. I have learned so much about my boys in our time together, a first since either has joined our family. Up until February 2011 I was a working mom and summers meant figuring out who was going to watch the boys, which activities they were going to have on which day and what was necessary to pack for their weeks enjoyment. Although I enjoyed the friendships I had in working, I have to say staying with the boys is the most rewarding experience of my life. I find myself enjoying the moments that I used to take for granted. Something as simple as playdoh or drawing at the kitchen table to me is a heavenly event. Another wonderful moment of our new lives has been family dinners. Family dinners used to be a Sunday evening event at my sisters house. I now host family dinners at least once a week if not more and have had the pleasure to share these with both sides of our family. We are all finding such amazing joy in our family! Last night after dinner we went with my sister in law and gorgeous niece and nephew to the park to feed the ducks. Another cherished moment. I am learning to look at life with a new reflection. Gone are the dreams of the material things that brought no value to our lives.
Yesterday my beautiful friend Chrissy posted a heartwarming blog about their journey thus far and the joy of family and emotions that were churned by their first family trip to the beach. They were one of many Lucky Cast Club families who found renewal in the sand in the last couple of weeks. The photos and Ah Ha moments that were found at the oceans edge were nothing short of miraculous. A sense of nurture, joy and once again apprehension seemed to be the theme of so many stories. We are two weeks and two days from our departure to the healing edge of the ocean. I am fighting tears thinking of what Crescent Beach has been to our family. It was the beach my husband and I adopted long before our children were in our lives and the first beach we took Cody to as a baby. It seems only fitting it provide hope and healing for a very tired family. We are traveling with 13 other family members and know the week will be filled with craziness and sheer joy as we traverse a home with 17 people and 2 bathrooms. Thank goodness there are a ton of boys who can pee in the sand! With all that said I wouldn't dream of having this vacation be anything less then the vibrant atmosphere it is guaranteed to be. With all the noise and constant laughter there is no way I will have time to dwell on cast #9 that awaits us in Chicago on our return. A little happy noise is only adding to my summer dreams!
I am going to leave you with a song. Please be sure to read Chrissy's post on our blog. It was dated yesterday and is sure to warm your heart!
Yesterday my beautiful friend Chrissy posted a heartwarming blog about their journey thus far and the joy of family and emotions that were churned by their first family trip to the beach. They were one of many Lucky Cast Club families who found renewal in the sand in the last couple of weeks. The photos and Ah Ha moments that were found at the oceans edge were nothing short of miraculous. A sense of nurture, joy and once again apprehension seemed to be the theme of so many stories. We are two weeks and two days from our departure to the healing edge of the ocean. I am fighting tears thinking of what Crescent Beach has been to our family. It was the beach my husband and I adopted long before our children were in our lives and the first beach we took Cody to as a baby. It seems only fitting it provide hope and healing for a very tired family. We are traveling with 13 other family members and know the week will be filled with craziness and sheer joy as we traverse a home with 17 people and 2 bathrooms. Thank goodness there are a ton of boys who can pee in the sand! With all that said I wouldn't dream of having this vacation be anything less then the vibrant atmosphere it is guaranteed to be. With all the noise and constant laughter there is no way I will have time to dwell on cast #9 that awaits us in Chicago on our return. A little happy noise is only adding to my summer dreams!
I am going to leave you with a song. Please be sure to read Chrissy's post on our blog. It was dated yesterday and is sure to warm your heart!
Monday, June 20, 2011
WAVES of emotion....
Blessings...gratitude...awe....miracles...
These are the words that come to mind as I reflect on the family vacation we returned from a few days ago. For the first time ever, my children experienced the beach...the gulf of Mexico...
We spent a week in Ft. Myers at a condo I used to frequent with my own family as a child. It was spectacular.
But the pinacle moment, or rather, moments, was watching my children limitlessly and passionately run across the vast white sands of the beach toward the breaking waves. It is a moment I will take with me to the grave. It touched my soul.
The giggles and frolick with which they ran and played tag and enjoyed such freedom with, was more than I could take the first night. I cried with gratitude. I cried for our superhero....who after a year and a half of being restricted with timelines of swimming and no swimming, no sand, no baths, etc., was able to spread his wings and fly...toward the heavens and pink glow of the sunset....toward his toddler joy of playing in sand, wading in the tide pools and dipping his beautiful self into the crashing waves. This is what the wait was for. This is what the sacrifice was unleashing... this one week of bliss for our boy. I know this now.
We are three days away from our 9th journey to Shriners. We prepare mentally and emotionally with hopes of the news that our sweet baby might be on his last cast. We step into our own crashing waves: waves of emotions that come with letting go of the cast-off time, of the joy of touching him skin to skin the way only a parent needs and craves...of sweetly watching him sleep curled into a ball in such a way only a castfree body can....it is painful yet again.
But behind the pain, there is such radiant hope and light that illuminates this darkness. We have a chance approaching...our hearts are near a song that sings of burying the days of casts and welcoming the new chapter of his story; the story of Infantile Scoliosis. His story. It is a story God created and wrote for our son, and one we accept with waves of alternating gratitude and sadness.
This morning at breakfast, I asked Jackson if he knew what Thursday was: "We go to the hospital for your new cast," I said. "Yaaay!" was his response. With excitement and smiles he asked me if they have the color orange.
This child amazes me.
Thursday, June 9, 2011
A night of fellowship and giving!
Escape Salon and our vendors raised close to $400.00 to benefit the Lucky Cast Club! It was an incredible night with amazing friends and family. I can't tell you how much this night meant to me and will mean to the families we can now reach out to. There are great needs for our group and limited funds, every penny will be stretched to reach the goals of our group. The money raised with this event and the Chicago event will be used to fund ongoing outreach and projects. I am purchasing two new DVD players for Cincinnati, additional parent packs for Kansas City Childrens Mercy, I would like to also work on DVD players and DVD's for Angelica to take with her and Cadence to Greenville and well as Parent Packs. We are going to plan a Mom's Weekend Retreat for ALL Lucky Cast Club families this fall. I am committed to continuing to raise funds for other projects...I want to make support/prayer blankets for members, eventually manufacture the shower vests for members, get the carseats for casters up and going and work on so many other projects the members have mentioned. This my friends is an amazing start and we have enough to keep us working into next year and welcoming the new families as they come! This club was created to keep moving long after our kids have moved forward and I know it will. LOVE TO ALL WHO HELPED make this evening happen. You are the tried and true and beloved friends I know you to be.
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