I eventually learned that the mother of these - actually very well behaved - five boys, had suffered through cancer, and had lost a leg. My new thought became, "Cancer...that's my nightmare."
Two years ago Friday, my nightmare became a reality when my five-year-old son was diagnosed with an inoperable brain tumor.
Two years ago, I was four-fifths of the way to my perceived nightmare. I had four little boys under the age of six...and I was going out of my mind! Not that I would have ever admitted that to anyone, because, after all, it was my choice to keep having babies. But their energy, their "busy"ness, their movement, everything was becoming overwhelming to me in a way I had never imagined. In the weeks leading up to the diagnosis, my nightly prayers would include, 'God please, help me, let something change so I can be a better mom.'
Discussion of religion aside (believe me, I will get to that "Things happen for a reason" bullshit in another post), things did change, and in the worst possible way. The beautiful family of four that I had always wanted was shattered forever.
The morning of Wednesday, April 22, 2009 was like any typical morning. My oldest two didn't have preschool until the afternoon, so breakfast was a lazy feast of waffles and Playhouse Disney. That week, everyone in my house had been sick with a tummy bug, so my nerves were already frazzled. My oldest was still in bed; 'his turn to be sick,' I was thinking to myself, as I let him sleep. While my 15-month-old was busy destroying the house, I escaped to Facebook, my social outlet.
It became later in the morning, Playhouse Disney still on, every kitchen cabinet emptied, and Lil C was throwing tantrums. As I took him upstairs to his bed for his morning nap, I realized that one of my five-year-old twins, Joey (yes, his real name), was still in bed. He had been up and been to the bathroom, but had returned to bed. At some point, he had even thrown up on the floor next to his bed.
'Great,' I thought, 'more shit to deal with.'
I attempted to wake him and ask him if he knew he had thrown up on the floor. His answers were slurred and groggy. He couldn't seem to look at me, instead, looking off to the left of me. And his body was jerking in a way I had never seen before.
It slowly dawned on me that something was seriously wrong, so I called Hubby at work. Of course he was in surgery, and, choking back tears, I said to the receptionist, "Can you get him? I think there's something really wrong with our son."
He came to the phone right away, and as I described what was going on with Joey, Hubby slowly suggested maybe I should call the pediatrician. I kept talking and kept watching Joey's vacant stare and jerking body, and I realized, 'I have to call 911.'
I hung up with Hubby and dialed.
The minutes that I waited to hear the sirens approach my house were agonizing. But thankfully, Lil C was asleep and Slim and Knox were zoned out on the t.v., so I could concentrate on Joey and manage somehow to call my dad to come and watch the other boys.
The paramedics arrived and swarmed in - four from the fire truck and two from the paramedic truck- and began to work. First was a barrage of questions for me: did he have any pre-existing medical conditions? Could he have ingested anything? Had he recently hit his head? Had he recently been ill? The answer to all of their questions was no, except for the last one. They concluded that it was probably a febrile seizure. That brought me temporary relief; but then again, I knew he hadn't had a fever.
My dad arrived while they were putting Joey on the stretcher, and I was relieved I could ride in the ambulance with him. I remember thinking I wished I had my camera because Joey would get a kick out of his ambulance ride once he was better.
En route to the local Children's Hospital, the EMT and I chatted about our kids and preschools, until Joey's - what I later learned were grand mal - seizures became worse, and the sirens were turned on.
Once at the hospital more questions. Had he hit his head? Yes, I decided to tell them about his hard fall three months earlier at hockey skating lessons. That had to be it, right?
He was taken to get a CT scan, and then, in deadpan, the ER doctor said to me, "Well, bad news, it's a tumor."
My mind immediately started racing. I could still hear the doctor talking, but it was as if he was at the end of a very long tunnel, and I couldn't make out anything he was saying. Instead I was thinking, 'We're supposed to be on a picnic for Earth Day right now, a picnic Joey planned. We were going to clean up the park. How does a little boy who can plan that have a tumor?'
"How does a five-year-old get a brain tumor?" I blurted out. I couldn't wrap my mind around it. The doctor didn't respond. He just turned his attention on Joey once again.
I called Hubby at work and blurted the news to him. There was a millisecond pause, as if he was trying to wrap his mind around it before he said, "I'm coming."
People tend to say that rapid fire, stressful events "were a blur," but I remember every agonizing moment after this. I remember meeting the neurosurgeon, waiting for the biopsy, the details of Joey's ICU room, the parade of nurses and residents, the exact way my stomach felt and how my knees buckled under me when we learned his cancer was inoperable, terminal.
This is something no parent sees coming. Three weeks before his seizure, he was a happy, energetic, creative child with a clean bill of health from the pediatrician who had performed his kindergarten check-up. But yet, there were the excruciating headaches he had gotten at least three times, so severe that he had vomited each time. I wrote them off as migraines or allergies, and was just getting ready to call the pediatrician about them, but obviously, it wouldn't have mattered. The surgeon surmised that the tumor had probably been growing shortly after birth.
That day two years ago changed our lives forever. Joey lost his battle to the cancer beast on June 10, 2010, so that "anniversary" is upon us as well. He was just six years old. I feel like there is less laughter and exuberance in our house. I feel like Joey's three brothers don't know what to do without him. And sometimes I feel like his dad and I don't know how to be happy without him.
We go on with our lives because we have to. We find happiness in small places and moments because those are what really matter. I try to shake off the nightmare that became reality, while being paranoid about so many more aspects of my sons' lives that I never was before. I force myself to think positive thoughts about the future, while sometimes feeling as if the family that grew out of my dreams, the family that was once picture perfect to me, has been shattered beyond repair.
Oh Kathy. I am so sorry to read your story. I ache thinking of your heartache. I don't have the right words to type so I will just send *hugs.* Looking forward to reading more about your life on your blog.
ReplyDeleteKathy, thank you for sharing the awful details of your tragedy. There are no words, except to say that I'm glad to have read your story. I now know a little more about the woman that I have come to admire.
ReplyDeleteThanks, Steph, that means a lot. Blogging is my cheap form of therapy, for sure.
DeleteI read another story about Pediatric Cancer and I think about this when my 4 yo gets anxious about death and wants to be reassured that she will live forever. Stories like yours remind me that it is not within my power to promise that. I'm sorry for the loss your family experienced.
ReplyDeleteWe used to be afraid to talk about death with our boys. Now they know it's a natural part of life. Kind of a sucky way to learn it, but still . . . Thanks for your kind words, Marian.
DeleteI found you through your comment on Mary Tyler Mom's blog. As I read this post I felt almost as though I was going through it with you. I won't even pretend to know how hard any of what you have been through was or how hard it might have been to share your story. But I will read about Joey and his story and he will join Donna and Aidan in my heart. I know they are only words but I am so sorry for your loss.
ReplyDeleteThank you for stopping by and for your kind words. I know my story isn't spreading as wide as Donna's, but I'm happy to know it is reaching a few.
DeleteDear Kathy, I came upon your blog thanks to your kind comments to me on one of my posts. I can't tell you how much I feel for you and your family except that the tears are running all over the keyboard. I'm just new to your site, but I think your writing is beautiful. My best to you, Laura
ReplyDeleteThank you so much, Laura! I am really enjoying reading your posts as well.
DeleteI just found your blog. Thank you for sharing your story. You write beautifully of something that most people can not even fathom. I have tears running down my cheeks. My son was given an "expiration date" as well when he was 6 months old. But it turns out the doctors were wrong: he was supposed to die before he turned 18months old. He is now almost 4.
ReplyDeleteHowever for a time we didn't know that, we had to start to wrap our heads around losing him. It was hard. What do you do? do you stop loving him so as not get hurt as much when you lose him? Do you keep going and doing all you can to make his few months count and give him as much love as you can in that small amount of time? We opted to not think too much about it and try and help him get as far as he could (he had a very bad kind of seizure disorder, and then was diagnosed with a mitochondrial disease). When he was 6 months old he was doing as much as a 2 month old baby. not looking at us anymore, no smiles, nothing. And then he got better, learned to walk at 27months, is making a lot of progress now, and doesn't have seizures or anything wrong health wise anymore.
I feel like I can relate a little bit to part of your journey. But not all of it, of course. It breaks my heart that your family went through the loss of your beautiful little boy. It makes me realize even more how lucky we are, and how the things we have to face now (major developmental delays), are really not bad at all.
There are no words to comfort you, and I know it's been a while, but at this time of year it must be really hard. I hope it is getting a little less hard over time, and that soon you'll be able to think of him with a smile in eyes as well as on your lips, and not as much pain. Much love, Raphaelle
Raphaelle, Thank you for coming by. I'm so glad that your little guy is still fighting and doing well. I think you did experience a loss of some sort when you were told you would lose your son. It does comfort me to know that there is hope for others like you. Hugs to your little guy!
DeleteAbsolutely heart-breaking. Thank you for sharing this incredibly personal and touching part of your life. I can't even begin to imagine what you and your family went (and are going) through. Thank you for being so brave! You have my prayers.
ReplyDelete-Allison
Thank you for you kind words and for stopping by.
DeleteMuch love to you. A friend's 2-year-old daughter has recently been diagnosed with cancer, and this topic has become very close to my heart. You are an amazing mother and woman, I am sure of it; thank you so much for sharing your story & your son's story with us. <3
ReplyDeleteThank you so much for your sweet comments. I will add your friend's daughter to my growing prayer list.
DeleteKathy,
ReplyDeleteI'm so sorry for your loss. I just found your site and look forward to reading more about your story and about Joey. I too lost my daughter to a brain tumor - DIPG. Addison passed away on June 9,2012. It was her fifth birthday. As we are about to experience our first Christmas without our girl, we are going through such a range of emotions. I must say I love the Christmas card idea and I will totally use that next year! I haven't read too much from you yet, but what I have read I can totally relate to. Thanks for sharing your story.
Melissa
Angel Addison's Mom
www.carepages.com/Pumafamily
Oh, I'm so sorry about your sweet little Addison. I hate whenever I hear of another child lost to this horrible disease. I hope your Christmas went as well as it could, and I hope this year brings you some healing. My love to you - you will forever be in my heart.
DeleteI am so incredibly sorry for your loss. I couldn't stop crying reading your story and imagining the pain you and your family have been through. My mother was diagnosed with brain cancer a few weeks after my 21st birthday and died 15 months later. The pain was almost too much to bear and still sometimes overwhelms me, but the pain of losing your child is so much worse. I don't know if I could cope. Thank you for sharing your story and the pictures of your beautiful family and may you continue smiling.
ReplyDeleteVanessa, I'm sorry for your loss, too. Behind losing a child or a spouse, I imagine losing your mom is horribly painful. I know I would feel that way about mine. It's amazing what we can cope with when we're forced too. We don't have to like it, but for the sake of our family we have to move on. Thanks for stopping to comment. Hugs to you!
DeleteRIP Joey.
ReplyDeleteKathy.... You and your famly are in my thoughts & prayers. Have you ever considered volunteering for ChemoAngels.com. They match you up with someone who is going through chemo. You agree to send them a note or card once a week. I am "angeling" a little girl right now. I have been volunteering for over 8 years. It might help you to know you are helping another child and their family while they are going through the most painful and agonizing time of their lives. YOur little Joey will always live in your hearts and will welcome you one day when you each have your family reunion with your sweet little angel.
ReplyDeleteDonna
Donna, I have never heard of chemo angels. I think that is a wonderful idea! Thanks for telling me about it and thanks for your kind words.
DeleteMy heart is heavy after reading Joey's story. Heavy for you and your husband, for your other children, and for all of the families who have experienced the heartbreaking loss of a child. I'm sure you found it cathartic to write, but you must also know how brave it was for you to share your sweet boy with the rest of us. Many blessings to your family!
ReplyDelete-Amy