Meet Liberty Speidel & Shwachman-Diamond Syndrome

Liberty Speidel is a speculative fiction author, mom, and former government top dog who I have the privilege to call a friend. We met at the RealmMakers writers' conference a few years ago, and I recently became her tax accountant too. From her super-secret lair near Kansas City, Liberty Speidel imagines no-nonsense stories with heart-hitting appeal. Subsisting a little too heavily on Earl Grey tea and dark chocolate-covered almonds, she claims this helps her write the highly-acclaimed Darby Shaw Chronicles and upcoming Justice trilogy. Her husband and kids occasionally pull her away from the computer for camping and hiking trips with her beloved Labrador Retriever.

Liberty was seriously already one of my favorite people because of her bright outlook on life and the positive vibes she gives off, but after hearing her story she’s my favorite-est (YES…I know it’s not a word). Liberty is Xander’s mom, and Xander has Shwachman-Diamond Syndrome. Let together learn more about Shwachman-Diamond Syndrome, Liberty, Xander, and the rest of the Speidel family.

Please give us the name of your son’s condition and describe it in as little or as much detail as you’d like.

My son Xander has Shwachman-Diamond Syndrome (SDS). It's tough to say, but it's also tough to live with at times, too. SDS is classified by two primary issues: pancreatic insufficiency, and bone marrow failure. It falls in the same class of diseases as Cystic Fibrosis due to the pancreatic insufficiency, and is actually the second-leading cause of P.I. to CF. However, it's still extremely rare.

SDS affects pretty much every system of the body to one degree or another, but it depends on the patient how it presents. Brain function, skin, heart, circulatory, lungs, pancreas, endocrine, bones, bone marrow, dental issues, eye issues, bowel function, disease resistance/immune system...they all are all impacted by SDS.

It can make it hard as a parent to know whether your kid has a common childhood complaint, or if it's something that you need to take them in to one of their myriad of specialists!

How did you discover Xander had SDS?

When my son was an infant, he quickly progressed to having reflux issues and being labeled failure to thrive.

Before being diagnosed with SDS, he had four hospital stays—two to try to get to the bottom of why he wasn't growing, and two more due to illness. Three out of four of these landed us in the hospital over holidays—his first Thanksgiving, Christmas, and Valentine's Day were spent in the hospital. A very on-the-ball dermatologist spotted a wonky number in some blood work and sent us down the path that eventually led to a diagnosis.

For the first 4 years of his life, Xander's care and difficulties greatly dictated our life. At the age of 2, we were told he needed a bone marrow transplant to prevent leukemia, and for the next two years, ramping up for that, going through it, and coming back to reality dominated our life. We live in Kansas City, but the experts in SDS were predominantly in Seattle, WA.

After a lot of back and forth—and more than a few arguments—my husband and I packed up my car and drove Xander to Seattle for treatments. My husband came home to be a bachelor for the next 5-1/2 months, while I stayed in Seattle with Xander for his treatment. Coming home was difficult because we had to reintegrate as a family as I continued to take Xander to clinics multiple times a week until we hit a year post-transplant.

How does SDS impact your family’s daily life? For example, are there things that are difficult for your family that are not for others?

To this day, Xander’s disease is a predominant factor in our life. Some days, I don't think about it much other than giving him his medicine that helps him process food and keep him healthy. However, he sees therapists and doctors on at least a weekly basis so I have to be very on top of our schedule, and it impacts our ability to be as free-wheeling as my husband would prefer.

Long gone are taking spur-of-the-moment vacations or long weekends without checking first our appointment schedule. Since Xander is on some refrigerated medications, we have to worry about keeping it in the proper temperature when we travel. This means no fly-by-night hotels.

And while it would be a big help to our family, I find myself reluctant to go back to work even part time because my schedule is so dominated by appointments. Some weeks, I have none. Other weeks, I want to call the hospital my home since I’m spending so much time at their clinics.

I'd be fired from most "standard" gigs, so I work from home doing contract work and writing books. It gives me flexibility, even if it's not always as well paying as it could be.

What were some challenges with transitioning to your “new reality” with SDS?

Because I had a healthy daughter, during this whole thing, I was worried about being accused of Munchausen's by Proxy because I had this sickly little boy. Something *had* to be wrong—I was nursing, but he wasn't gaining. We already knew I could nurse properly because my daughter was strong and vibrant, tall and healthy. I just didn't know what was going on. I'm a very laid back person by nature, but all of this had me bundled in a ball of anxiety that only eased as we had answers.

Our family and friends actually took to the diagnosis pretty readily. Our weirdest experience in those days was having to explain to my husband's family—who are 7th Day Adventists and follow Jewish food laws—that Xander had to have enzymes made out of pig pancreas with every meal.

What are some phrases that people use when talking to you, that you wish they would just stop using?

"He looks so healthy!" drives me nuts, especially when I'm trying to explain that Xander needs to take meds or keep his hands clean and that we need to deal a little more proactively with cuts and scrapes.

Yes, he's healthy NOW. But you sending your kid to school with a 100° fever and a cold? That could land him in the hospital. While his immune system is working decently well right now, there's the chance that could change. A cold is not just a cold for us. We have to monitor him closely.

I have so many SDS friends whose children get hospitalized FOR A COLD. Or flu. Or RSV. Or some other stupid virus that they probably picked up at school or church or scouts or soccer. When people disregard a parent's warning, it infuriates me.

While it hasn't happened for us in a long time, I still hear from friends that people will come to their house for a holiday, and after they get there, say "Oh, little Suzy has had the flu this week. She’s on DayQuil though. I hope that's okay.”

No, it's NOT okay! Some parents of "normal" kids will never understand that the flu for their kid isn't a huge deal. But it could kill our kid.

What are the biggest misconceptions people have about SDS?

Not many people know what SDS is in the first place, so it's hard to have misconceptions. But most people know about Xander's bone marrow transplant, and a lot of them think that his transplant got rid of his SDS. Not true.

SDS is extremely complex, and the marrow failure is only one aspect of the disease. Did we eliminate his risk of having his marrow fail again and him developing leukemia? If it's not a 100% yes, it's very high. But he still has P.I. He still has skin issues. We still have behavioral problems that make me wonder some days if he's old enough for military school. (I jest...mostly.)

What are some struggles nobody sees?

Sometimes we feel like our hands are tied. We want to do so many things as a couple and as a family, but doing something like moving can be nearly impossible because we need to remain within two hours of a major medical center.

The idea of my husband changing jobs is also wrought with anxiety, because we cannot be without insurance for even a few weeks. Xander's prescriptions alone necessitate insurance coverage. Just ONE of his medications is $3000 a month without insurance!

Even getting a sitter can be difficult since they have to be comfortable administering medicine and being extremely firm with a child with behavioral issues. Thankfully, now that my kids are in school, we get 1 date day a week because of my husband's schedule. It's nice…and necessary for our sanity.

How do you reconcile your faith with your condition not going away? Is is relatively easy for you to hold on to the idea of a good God?

I'm a pretty pragmatic person by nature, and so I look at things through a different lens than a lot of people. I get more upset about this disease when it takes the life of a child that has it, usually due to complications following a bone marrow transplant. Attending a funeral for a child that had SDS destroys me. 

God gave my husband and me this child. He knew we'd be up to the task of caring for him and set us on the right path. Surrounding his transplant, there were so many times when God showed up.  He gave us the Seattle treatment, financial blessings from people we didn’t even know, and help from so many around us.

Our pastor said something many, many times from the pulpit—"God's got this." I glommed onto that phrase because it was TOTALLY true. And it still is. Whatever happens with Xander's disease and its progression, God knows what's going to happen, and He will be there to guide us down the right path because He's already done it. This definitely lets me point to God and know that He is good.

When we decided to pursue Seattle, a wave of peace washed over me the likes of which I've never experienced before. I knew that things would be okay. I knew He was going to take care of us, one way or another. I didn't need to know anything else—just that it would work out.

What can we do to help the SDS community?

My heart’s cry is for those families impacted by SDS to have hope, better answers, and joy in the meantime. There’s so many places to donate—here’s a few:

  • Shwachman Diamond Syndrome Foundation, and Shwachman Diamond America. Both issue grants for research into better treatments for SDS.
  • SDS kids are eligible for wish trips, so consider supporting your local Dream Factory or Make-A-Wish program.
  • Consider also donating money to your local children's hospital and designating it to go towards families who need financial assistance.
  • Offer to pay for a thorough house-cleaning for a family whose child has gone through a bone marrow transplant or an organ transplant.

 As for me (Liberty), I write speculative fiction and am currently working on my first contemporary romance. If you like mystery with your sci-fi, or sci-fi with your mystery, you might give my ongoing series, The Darby Shaw Chronicles, a go. Darby is a superhuman with the unusual ability to revive murder victims...if she finds their killer in time. I'm hoping to release up to three or four books in 2018, so I'm hoping Xander stays healthy so I can get all my work done!

To read more stories about how to balance faith with chronic illness, you can pick up my book Perfectly Abnormal: Uncovering the Image of God in Chronic Illness.

This space is all about community. Feel free to jump in with any questions you might have about anything Liberty shared here. Or to share your own story. You can even drop a note of encouragement or some wisdom you've picked up along the way too. I love it when we engage with one another.

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