I’m not much of a Facebook person, in fact other than a few pictures over the years I’m pretty sure I’ve never actually written anything. I’m not much of a writer either. The last time I wrote this much I was probably back in college and that was double spaced in 14.5 font in order to fill two pages. But things have changed now, everything has changed…
I was sitting in the same exact chair in the same exact location last Saturday at this time watching Easton at t-ball practice. Everything was “normal”. I had a “normal” family, a “normal” life, everything was easy. Today I don’t know anymore. I don’t know anything. I’m scared. Like really scared. It’s a feeling I’ve never felt before. Where your stomach hurts so bad that you can’t eat and when you finally try to sleep you can’t because of what’s going through your mind. There are thoughts no parents should ever think. Things so bad that I’d never put them on paper or say them out loud. But for the past 48 hours I’ve thought about those things, horrible things. I try to change my thinking, sometimes it works sometimes it doesn’t. I know that’s how things are going to be for a while. There’s a mental adjustment to our new “normal”.
Last Saturday we were planning for the upcoming birth of our third boy. We knew we’d have to induce last week at 37 weeks. Sam wasn’t feeling great on Sunday so we went in to have her checked. We were 20 minutes away from being released and going home when his heart dropped dramatically and took a few minutes to come back. Ok so now the doctor says we need to induce and we would be having he baby that day. We can deal with that. We move over to a labor and delivery room. Everything is going well. Sam is having contractions the baby seems okay. They break her water at 3 pm. Still everything is ok. At 3:16 she has another contraction. Paxton’s heart rate drops again and stays down. Within 30 seconds we have 12 nurses/doctors in the room. People move with a precision I’ve never seen. A nurse grabs me and pushes me in the bathroom as she throws scrubs at me and says put these on. I change quickly and we run, we run. They are pushing Sam down the hallway to the OR at full speed, like what you would see on one of those crappy hospital sitcoms. Is this real is this really happening. To say I was terrified would be an understatement. We started running at 3:20. At 3:22 they started general anesthesia. At 3:25 they cut her open and delivered the most beautiful child I’ve ever seen. My son Paxton Dean Kalasek. He looked so perfect. His apgar score was a 9. I breathed a sigh of relief. Sam was out cold but the doctor assured me he was doing awesome. Everything returned to “normal”. I followed Paxton up to the NICU and he looked so content. Then I went to check on Sam as she was waking up. There was obviously a lot of pain, but she is crazy tough and got through it. Things seemed to be ok…
Where do we sit six days later? I don’t know. We are terrified, angry, sad, overjoyed, in love and every emotion in between. We don’t have 100% confirmation of what he has, and won’t until the genetic panel comes back. But I think if we want to admit it or not, we know. A parent knows… Plus the doctor told us to start mentally preparing.
I’m not going to talk about what he has now. He’s not ready, we’re not ready. But it will dramatically change the rest of our lives. It will change our home, our relationships, our activities, everything. It will be our new “normal”.
As I think my wife or anybody who really knows me would say, I’m a really positive person. How do I do that now? If I was to write my own life story to this point, the common theme of the story would revolve around me making plans for my life but then those plans not coming true. Sounds terrible right? It’s not. EVERY single one of those plans that didn’t turn out the way I wanted to, turned out unbelievably better than I could have ever imagined. Like so great that I couldn’t even have fathomed it at the time. That’s the story of my first 35 years, an unbelievable awesome life. So does that change now, has my luck run out? No it won’t and no it didn’t. We were handed news this week that no parent ever wants to get. The type of news that mothers have nightmares about at night when they are pregnant and fathers say that will never happen to us, a 1 in 25,000 shitty roll of the dice. But it’s real now. It happened to us.
When something like this happens you’re lost, but I have to thank our family and friends for their support. It has absolutely meant the world to us. From our parents who have cared for Easton and Benny this week, to our siblings who are doing everything they can to support us, to my boss at work and Mutual of Omaha for their support and prayers, and my friends who have withstood a constant barrage of my text request for prayers and thoughts. Without these things we would not have gotten through the week. So thank you from the bottom of our hearts.
I ask myself how could a loving God let this happen. How could a God do this to my beautiful 4 lb 3 oz Paxton. I’m mad, so mad. I don’t have answers and I never will. But I make myself reflect on what God has provided already. A family that I love beyond words. Two wonderful compassionate little boys who will be the best big brother to Paxton and a beautiful loving wife that has such strength and love for her family, and lastly the most perfect boy God ever created in Paxton Dean Kalasek.
We are so grateful for Paxton’s life and the blessings he will bring to our family, but we hurt right now really bad.
Brian
Dear Paxton, I’m writing my first note to you from a McDonald’s booth with your brother Easton. He’s eating a happy meal, I’m crying, kind of ironic. It makes my heart ache with pain that this is a place you’ll never be able to go. When a dad has a new baby he wants the world for that child. He’ll do anything for that child, anything. Nothing changes for us buddy, nothing. I will love you and advocate for you, be your biggest supporter and champion, love you beyond words every day of my life. I will go the end of the earth to help you. Your mom and I love you to the moon and back. We have an uncertain and at times rough road ahead of us, but our love for you will never waver. Remember you will always have us and God in your corner. We’re going to be ok!!!
Nothing has changed…
Love,
Dad
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.