Thursday, November 15, 2012

Reflections: Infusion Day

I'm typing this as I sit at Children's Hospital of Wisconsin with Jack, passing the time as I listen to the pump that is delivering his monthly IVIG treatment into his veins. Jack is busy watching a Baby Einstein DVD of all things, and I'm left to think.

Next week marks the three year anniversary of our first infusion. It was the day before Thanksgiving when we got the call alerting us of Jack's immune deficiency and informing us that we had to come to Milwaukee immediately and spend the night while Jack received his first treatment. Imagine our horror, not even three weeks after burying our oldest son (whose cause of death and autopsy results had not even been made known to us yet), to learn that our other son also had a potentially life ending disease. I was numb. I never wanted to set foot in this hospital again, but I had no choice. In a matter of hours I would be walking that same skywalk that I walked out three weeks earlier to a car that still held two car seats though only one of them would ever hold a child again. I cried as I turned off the highway and saw the building come into focus. I cried as we walked the skywalk to the desk clerk who told us which room we were being admitted to, and then again when we passed the large bank of windows that looked over the helipad where Henry's little body was resuscitated the night of November 1. Needless to say, it was a difficult trip. 

We learned at that visit that Jack had Bruton's x-linked agammaglobulinemia, and that these visits would be required every three to four weeks to build up and maintain a sort of false immunity in him. Though they would no longer require overnight stays, they would still be all day endeavors and required a good number more visits to Children's Hospital than any parent ever hopes to make. I felt sorry for Jack, who would have to endure these treatments and pokes for the rest of his life. I felt sorry for my husband, as I saw the emotional strain this placed on him and, I'll admit it, I felt sorry for myself. I didn't ask for this. I didn't *want* this. This is not what we signed up for when we decided to have children and start a family.

All of these visits though - I'm estimating about 40 so far, as we started coming every three weeks and then switched to every four weeks - have given me perspective. I am not alone. I am confident that every patient and patient family that walks through those doors wishes they didn't have to. I've also learned that despite how devastating our situation is, it could still be worse. 

Today's treatment is winding down, and I will walk out that same skywalk as we return to the car. I still think of Henry, and mourn that loss every day as I will until the day I draw my final breath, but I know that he is with me both now and always and there will be no tears today. I don't feel the overwhelming sense of loss anymore when I walk through these hallways. I feel hope, comfort, kindness, and empathy. Time has eased nothing, but the perspective God has granted me these last three years has afforded me the opportunity to adjust the weight of grief and make carrying that weight a little less burdensome. For that, I am grateful. 

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Monday, November 12, 2012

Children's Books For A Cause... Please Share!!

As you likely know if you've been following this blog for any length of time, my husband and I lost our son Henry three years ago to an undiagnosed immune deficiency disorder. In short, Henry woke up sick on Friday morning, October 30th, 2009, and closed his eyes for the last time three days later, aged three years and four months old. He was an amazing little boy, so vibrant and happy, always smiling, and he loved animals. "Aminals," as he called them, were his life. Every day I would take him and his brother Jack to the little zoo in town and walk around the circle. Sometimes we would go twice a day, because he loved it that much. He was always very concerned about the animals. If boys three times his age were being mean to the animals, Henry had no problem telling them so. "Be good to the 'aminals'!" was his mantra, and I heard it more than once in his short life.

At night my husband, Darrin, and I would share bedtime duties. Henry had a three part routine that required first Mama, then Papa, and then Mama again one last time. During "Papa time," Henry would describe the animals he saw that day and their antics, and he and Darrin would conjure up bedtime stories about the animals, always interjecting Henry into the stories to remind others to treat them with kindness and respect. Henry always saved the day. 

After his passing, we decided to publish these bedtime stories in memory of him, and created the Adventures of Henry book series. We published our first book, Timmy The Goat, two years ago and have since published two more - Mikayla the Wolf and Sam the Snake; all based on stories my boy created with his Papa. The books feature animals who share their names with other children (and at least one adult) battling rare diseases, and in the back of each book there are pages dedicated to these people and the conditions that affect their lives. Among the children featured is our other son, Jack, who shares the same immune deficiency that claimed Henry's life: x-linked agammaglobulinemia. The books also include "Teachable Topics" about the various locations and animals that are mentioned in each book to help parents further educate their children about some of the animals and places our Henry enjoyed learning about. The books are geared toward elementary aged children, and the reviews we've received from friends, family, and strangers - adults and children alike - have been excellent. Not just for the stories and the message behind them, but also for the quality of the books themselves. 

Our intent in publishing these books was threefold: to honor Henry, to help raise awareness for rare diseases, and to raise money for the organizations that help the children who are afflicted by them. Profits from the sales of these books will be donated to organizations like Children's Hospital of Wisconsin, and the Crohn's and Colitis Foundation of America, who work persistently every day to find cures and treatments for these kids and so many other children like them. 

What is breaking my heart is that after nearly two years of diligent book sales, we have yet to become profitable. We attend book fairs and vendor events at every opportunity and are blessed to be able to sell our books in several local retail outlets in addition to our own website. Yet each month we pay out upwards of $300+ dollars in storage, publishing, and vendor event costs. At $15 a book, we are still far from being able to hand a check over to these organizations in Henry's name and bring some closure to his death by helping others on his behalf. Vendor events are unpredictable, and we never know going into one exactly how many books will sell. Some days we are closer to zero, and some days we are closer to one hundred. Darrin and I sell the books ourselves, so our time is limited to the weekends he is not in school (he has returned to college for a masters degree in biotechnology in hopes of finding a cure for our son, Jack) as one of us has to stay home with Jack while the other is out selling books. It makes for slow going. 

This is where I am praying you can help. I'm wondering if you could do me the favor of sharing this blog post. Share it on your blog, via email, or with specific friends you know who are well connected or also have social media platforms on which to spread the message far and wide. We have approximately 4000 books left in stock between all three titles and every one of them would make a fantastic Christmas gift for the children on your gift list (or their teacher or daycare provider!) this holiday season. An inventory of 4000 books is nothing for large retailers, but for one local bereaved Mama and Papa, it might as well be the weight of the world.

Can you please help us find homes for these books this Christmas?

I told my husband I was determined to sell all of them by Christmas, but I can't make that happen without a little help from my friends... and their friends, too! Even if we could put a massive dent in the stock it would help us to have a more manageable inventory that we could then relocate to our home and thereby stop paying our monthly storage fees, eliminating one profit-eating expense. And if you're wondering, we need to sell about half of that inventory - approximately 2000 books - before we are profitable and can start sending checks out to these organizations in Henry's name. I sooo can not wait for that day to come!! 

We aren't in this to make money for ourselves, that was never our intent. We simply want to give something back to a medical community that has helped us navigate our way through hell and back (from the death of one child and the almost simultaneous diagnosis of the other), all in the name of one of the sweetest little blue-eyed blonde-haired boys you could ever know. 

These are our books

Here are some specifics about them

  • Title 1: Timmy the Goat: Spelunking Adventure 
  • Title 2: Mikayla the Wolf: Awakening at Yellowstone
  • Title 3: Sam the Snake: Refuge at Bureau Creek
  • Cost $15.00 each 
  • 8" x 8" in size
  • Fully illustrated in color by local (NE Wisconsin) sisters Sonja and Eve Funnell
  • Approximately 48 pages in length
  • Available for purchase at 
  • FREE SHIPPING on all US orders through December 31, 2012 to help move inventory!!
  • Gift wrapping is available if requested (note at payment, or message us at our Facebook page)
If you don't have a child in your life to buy for, consider purchasing one or more books to donate (there is a donation option listed at the website above). We can send donated books to you, to a donation location of your choice, or deliver them to Children's Hospital of Wisconsin for distribution to the various clinics and patients as hospital staff sees fit. 

Thank you so much for reading this, and for helping spread the word in any way possible. You will never know how much that means to us.

For blog posts about my grief process as a bereaved mother, Henry's life and death, and photos of our boy, please click {HERE}, or click the "Henry" label on the sidebar.

God bless you and your family, 

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