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Then Sings My Soul
The first yellowed rays of morning light peek through the blinds. There is a slight stirring, and then the sound of a baby's chatter breaks into the sleepy silence. My first impulse is to squeeze my tired eyes tightly shut and roll over to doze back into slumber, but the sound persists. A happy giggle, followed by palms lightly slapping against wood. My eyes crack open to see the shadowed outline of a little figure standing in his crib. He bounces excitedly in anticipation of his mama and daddy soon awakening to lift him out. More garbled shrieks of delight, then the joyful clapping of small hands. His chubby arms reach out in eagerness as I bend over to hug his warm pajama-clad body. As I snuggle him into me, my thoughts are wrapped in gratefulness that this day, amongst so many others, has begun with the gift of embracing an undeniable miracle. My prayers, sent swiftly heavenward, start with the fervent hope that it may always be so. This sweet son of ours, this blessing that God has seen fit to entrust us with, has a smile like bright sunshine --warm, pure, and illuminating all those who stand in its path. No matter how wearily my body protests at the beginning of each new day, I cannot help but retrace my first thoughts to where I was just one year ago and how I was unable to see where Jaymun's journey would lead us. Amidst all the sharp twists and turns, through all the bends in the road, scaling unimagineable heights of joy, and plummeting to the very depths of hellish lows --I am able to stand beside the bedside of a little boy who has captured the hearts of many with his magnetic personality and sweet spirit of courage. A little boy who wasn't expected to come through the storms of cancer and be strong enough to bounce excitedly in his own bed every morning, a little boy who has shown thousands what amazing beauty can come of terrible tragedy. A little boy who daily shows us what love looks like when it is wrapped up in prayer. And to those of you who wonder just what good can come of sorrow, to those who wonder what use is prayer when all around us there are such horrific stories of pain and suffering, to those who wonder what possible lessons could ever be learned in the midst of heartache -- it is to those that I offer the following bits of truths, learned one step at a time along the way.....
...Strength for the day. The phrase, "One day a time" resonates deeply with me. There were many days when I felt I could barely get through the next few hours, much less the day's end. People constantly commented on our "strength", saying they were certain they could never handle what we had been given. I take no credit whatsoever for being strong on my own merit. challenge all of our readers to look to the One who promises His comfort. He lifted us up when we could hardly stand on our own two feet. So when you have nowhere else to turn, He is there. When your voice is but a hoarse whisper of pleading, He will hear. When the tears you shed fall down your cheeks like rain, He will reach out a hand of love to wipe them away. When you stagger with the burden of heavy sorrow, He is there to lift you up. When your body sinks below the waves of crashing pain, He will hold your head above the water. He will because He Is.
...Respect for medical staff. Say what you will about the exorbitant salaries of physicians and surgeons, but when you have a sick child who is facing the long road of painful treatments and possible death, money doesn't seem as big of a factor anymore. Jaymun had no less than six oncologists, five bone marrow transplant doctors, numerous ICU staff, and an army of nurses daily taking care of him. I admire their tenacity to go through years and years of medical school to get to the point where they are now. Their wisdom and insightfulness, as well as their professional ability to consult with other specialists around the country, was reassuring to frightened parents such as we were. Combine the loving and compassionate care of the nurses who were the hands on part of Jaymun's treatment, and we were swiftly reassured that we were right where we needed to be.
...Our children's coping abilities. They have amazed me with their tenderness and love for their baby brother. Never a complaint, never a pout directed toward their brother's leukemia taking away attention that should have rightfully been shared amongst them as well. My favorite memories are always those of watching Jaymun's reaction when one of his siblings walk into the room. Pure joy. They love him all the more because they know what it is to have been separated for so long from him.
...The kindness of many. I have never thought of our family as anything other than ordinary. But Jaymun's story? I'm slowly coming to the realization that most people think of it as extraordinary. There is not much else I can say about our gratitude for people who stepped up to send money, packages, gifts, and prayers. We felt it in the depths of our being when he was almost taken from us before Christmas. I know that it takes special effort to actually make a meal or purchase a gift card and mail it out--but so many of you did. You didn't just say, "Let us know what we can do to help." You just did it, and that makes all the difference in the world.
...The need to donate blood and plasma. I lost track of how many blood, platelet, and plasma transfusions Jaymun received throughout his chemo and in the ICU. Without them, he would not be here. It's really that simple. Please, if you have the opportunity to give blood, do it. Hospitals rely on everyday people like you to take time out to donate. I've heard so many times, "I'd love to, but I'm really squeamish about needles." And my reply? "I'm really squeamish about innocent children dying." (Apples to oranges, don't you think?) I'm anxious to put together a Bone Marrow Drive in the near future. Most people (ourselves included), have no idea that they can be registered in the National Database for Bone Marrow. We were blessed to have Devon be a match for Jaymun's bone marrow, but there are so many who desperately need a match for their transplant and don't have one. Read here for more about the need for bone marrow donors from our Nurse Evelyn. This scenario is actually happening to people right now. It's not just some far off story or an isolated case. Little children and adults are dying because there is no match for thir marrow transplants. I became aware of one such story a few months ago. This little boy in California was born with AML leukemia, just like Jaymun. He died, because there they couldn't find a bone marrow donor. I can't stop thinking about him, about how he and Jaymun went through the exact same thing, only Jaymun survived and Trevor passed away. This could have been us. Even more ironic is the fact that Trevor's last name was pronounced exactly the same as ours! Now that I've learned about Trevor and his family, I just feel a heavy responsibility to make people aware.
...Awareness for other families who are suffering. They are out there, each with a different story, but all of them hurting just the same. I remember one day when I was talking with our oldest, Ben, about a family I'd met at the hospital. They were going through a particularly rough time and my heart just went out to them as a parent watching a beloved child suffer. I said something along the lines of, "Those poor people. How can they take any more bad news? How are they able to keep going on? How do they cope with--" Ben interrupted me with an incredulous, "Mom!" I said, "What is it?", noticing his surprised expression. He answered with a laugh,"Mom--We ARE those people!" I guess I never thought of our situation as being depressing enough to warrant others' sympathy. Looking back, now I know that we really were "those people". Other families right now could use prayers for their loved ones. Here are some links for you to read:
Those that have lost loved ones:
Those that are still in battle:
These are only a few of the thoughts I've encountered along the way. I still confess I'd rather not have had to go through this ordeal to collect these bits of "inspiration", but if we didn't share some of our insights with you, Jaymun's story would only be an interesting read, at best. Shifting gears in this insanely lengthy post, we introduce you to
The Birthday Boy!
Mr. Jaymun turned one year, much to our delight and sadness, all at the same time.
(I know you mothers out there can relate.) This was the most emotional one year old party I've ever witnessed.
All good emotions, I assure you. We celebrated with friends and family and just enjoyed the incredible blessing of our little guy reaching this special milestone.
We were lucky enough to have
some of his nurses
there, as well as his oncology
nurse practitioner Chris
and our beloved
family doctor who surprised us as well!
130 guests, lots of food, games, and laughter later, we were able to look back on the day with such happiness.
Both Ben and Jaymun's birthdays are in July, so we had their
birthday party together.
It was rather amusing to see the age spectrum of our children--Ben turned 15 and Jaymun turned 1,
so we are privileged to have one foot firmly planted in both raising a
teenager and a baby at the same time!
I have to give credit for all of Jaymun's birthday photos to a new friend of mine. Jenny became aware of Jaymun a few months after we set up his website. She began to send these lovely packages to the hospital, with thoughtful gifts not just for Jaymun, but the rest of the family as well. I had no idea who this sweet lady was, but every once in awhile, she would email with encouragement or send a card, etc. I later found out she is a skilled photographer. (I know she's blushing to hear herself called such, but it's true!) She would continually ask for people to pray for him--remember, she didn't even know us at the time! I invited her to the boys' birthday party and was delighted to get a phone call from her saying that she was planning on coming. I'm going to add the crucial info that she lives three hours away and was driving with three children under the age of eight. When I asked her to take photos for me at the party, she agreed with some hesitation, a bit afraid that the party was too important to mess up the photo taking. Well, she just sent me the edited photos and I got her permission to post some of our very favorites for you to see. What do you think? I may be a bit biased, but she did a beautiful job! (We love you, Jenny, just so you know!)
The morning after the birthday bash, we had Jaymun's baby dedication. It was a significant date for us, since July 15th was the day the doctors told us Jaymun had leukemia. One year later, he's in remission. Daddy wrote a special song to commemorate the occasion.
On September 15th, we are participating in the Milwaukee Al's Run on behalf of Children's Hospital. You are all invited to walk with us as part of Team Jaymun (password is "jaymun"). He's one of the hospital's Children's Champions this year, as a representative of their dedication to helping sick children have a chance at life. If you aren't able to walk, we've provided a way for you to donate to our team (all proceeds go to Children's Hospital). Any amount is appreciated, of course. And as an added incentive to give, you'll receive a personal photo card of Jaymun with our thanks!
Jaymun is a happy, strong, cheerful little guy. He's crawling like crazy and walking with determination around the furniture. He has seven teeth in his mouth and eats food like a hearty sailor. He learned to clap on his birthday and now entertains us with this new talent. He is a child of huge grins and bright eyes that sparkle. He loves his family and he especially loves life. What began as a horrifying start to his infant life has turned into a story of triumph and courage. We hope to keep posting monthly updates to keep everyone informed about how things are going for him. Life seems especially sweet right now, to be able to enjoy Jaymun's good health and remission. Thank you for reading, for donating, for praying. We can't completely absorb how much support our family has received from our readers. I just know that when I look at him, I'm filled with a love for all that is precious in life. Filled with overwhelming joy that I can truthfully say,