little boy in karate suit

Why I Go Gold in September Even Though My Son's Ribbon Is Green

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Chances are, if you stumbled upon this blog, you are here reading about my now 6-year-old son Oakley’s journey with Prune Belly syndrome and kidney disease. Both are life-threatening and serious diseases with no cures. I am a huge advocate for both diseases to bring much needed awareness.

Prune Belly syndrome only effects one in 40,000 births each year so it is little known. My son’s journey with Prune Belly syndrome, or PBS, has been a rough road. He has had countless procedures, tests, and surgeries. He has spent holidays and birthdays in the hospital. He has missed out on a lot of things a healthy little 6-year-old boy should have experienced. He can’t swim during the summer due to a catheter or a stoma. He cannot engage in contact sports as much as he loves football. No sleepovers due to the medical procedures he needs during the day and overnight to keep him stable.

little boy with prune belly syndrome after surgery

But, he is alive.

When you give birth to a child who was not expected to survive, you claw and grasp for any opportunity you can to learn and educate yourself as much as possible. You stay up late at night researching and looking for any type of study you can find that may benefit your child to improve their quality of life. You join support groups online and you pound so much information into your head it could explode. With my son’s condition, he doesn’t really fit into any single category. I’ve joined and become part of many different groups and circles of friends to put my own little roadmap together for him.

A few years back Oakley started getting little pinpoint dots all over his body. Then his lymph-nodes started to enlarge. I took him to the pediatrician, and they ran blood work. Several more times this “rash” presented itself. They ran so many different tests to find the cause. I remember them telling me this can be a sign of a type of cancer called leukemia. My heart dropped. After more tests and meeting with a hematologist, he was diagnosed with a mild platelet disorder.

Some aren’t that “lucky.”

My first experience with childhood cancer that hit home for me happened a few years ago. I met a woman who had a son a similar age to my son and also had kidney disease. We met in an online support group and really clicked. He was on dialysis for hours each night and was just buying time until he was old and big enough to receive a new kidney. His mom and I would talk often on the phone and offer support to one another. She just lived a few hours away from me, and we ended up meeting in person a short time after. I fell in love with her love for her son. He was adopted and shortly after is when they were notified he had serious health issues. They were given the chance to back out of the adoption, but they didn’t blink an eye. They took that sweet baby home and loved on him.

I remember talking to her on the phone one evening and hearing her son cry in the background. She said he was being fussy lately. The cry wasn’t a normal cry to me; it was a hurt cry. Something was hurting him. She was determined to get to the bottom of it. They thought maybe his dialysis catheter was suctioning inside of him causing discomfort. But it wasn’t that. He was scheduled for an ultrasound.

One evening I was driving to the store. My cellphone rang, and it was her. I answered, and she said, “Sarah, they found something, and it isn’t good.” She told me he had a large mass on his liver, that it was cancer.

My heart sank; I started crying. Why? How? This sweet baby, his sweet mama. His tumor wasn’t able to be resected due to a previously diagnosed bleeding disorder.

Another mom from our kidney support group scrambled to get me a flight to Chicago to say goodbye, but it was too late.

Michele called me, “Cole’s died.”

Cole Joseph Vida died on November 26, 2011.

Cole

Cole was worth more than 4.

September is Childhood Cancer Awareness Month.

Talk about it, write about it, donate. It’s not contagious, but it can come knocking on your door anytime. Day, night. Summer, winter. Yes, your child. Your innocent, beautiful child who doesn’t have an evil bone in his or her body.

I understand it makes some people uncomfortable seeing children in their weakest state. Children in the process of dying in their parents’ arms. But if this is what it takes to get people’s attention to save these kids, that’s what has to be done.

I frequent the same circles as families who have a child with cancer. We go to the same clinics and the same hospitals. We go to the same events our children are featured at.

Our children might have a different diagnosis, but we get one another.

The hurt is the same.

There is one hurt I never hope I have to feel, which is the loss of my child from his disease. I don’t ever want to hear there is nothing more that can be done. I don’t ever want to have to sign those Do Not Resuscitate papers. I don’t want to be called into a small room while my child was in surgery to be told, “I’m sorry, he didn’t make it. We did all we could.”

No parent should ever have to endure that.

But they do.

25 percent of children with cancer die

35,000 children are being treated for cancer.

13,500 children are diagnosed with cancer each year.

This is why I go gold even though my son’s ribbon is green. It has to stop.

Yes, my son’s life matters. Yes, his disease needs awareness.

But this month, I go gold. This is for those lost and those still fighting the fight of childhood cancer, a battle a child should never have to endure and a battle any parent should never have to watch their child fight.

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When People Say, 'God Only Gives Us What We Can Handle' About My Child's Cancer

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People often try to offer comforting and encouraging words to me as I care for my daughter with childhood cancer. One of the things that people say is, “God only gives us what we can handle.”

I want to discuss this phrase.

To start, let’s look at the first part, “God gives us.” This tells me God has given me this situation. So when you say this to me, it feels like you are saying God has placed that tumor in my child’s head. God gave me a sick child. God is the reason my child has cancer.

If I were not a believer in God, I’m not sure that would make me very interested in learning more about Him.

Then, let’s look at the second part, “what we can handle.” I assure you, I cannot handle this. This mass in my daughter’s head wasn’t placed there because God knew I could handle it. I’m not any more equipped to handle it than you or anyone else.

Again, if I were not a believer, I would think God obviously does not know me very well if He thinks this is something I can handle.

Now, let’s look at what the Scriptures say about troubles:

The Lord is a refuge for the oppressed,
a stronghold in times of trouble.  Psalm 9:9

Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.   Psalm 138:7    

In this world, you will have trouble. But take heart! I have overcome the world.  John 16:33

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.  2 Corinthians 1:3-4

These verses tell us we will face troubles. Hard times will come. They don’t tell us He will send them. They tell us they are there. The verses also say God is our stronghold, He saves us, He has overcome the world, and He will comfort us. It isn’t about what we can handle but what He can handle alongside us.

Perhaps, instead of “God only gives us what we can handle,” what should be said is, “God helps us handle what we are given.”  

The Mighty, in partnership with Fuck Cancer, is asking the following: Write a letter to yourself in regards to a cancer diagnosis. What would you say or wish someone had told you? Find out how to email us a story submission here.

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My Husband's Answer to Our 4-Year-Old's Question, 'Is This the Part Where the Girl Dies?'

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My husband is a man of few words, but that does not stop the deep thinking going on in his head — thoughts he rarely shares about his little boy we couldn’t save. So when he busted out some powerful words the other day, I was a bit taken aback.

We were getting ready to watch a video of a pastor whose daughter had died from a terminal form of pediatric cancer called DPIG… as Ron was setting up the video, Lily, my death-obsessed 4-year-old asked, “Daddy is this the part where the girl dies?”

Our youngest daughter goes in and out of understanding what has happened to her missing brother. Death seems to not only petrify her but also haunt her as she comes to grips with the fact that children get sick and though not all sick kids die, some do and somehow that happened to her brother and best friend, Matthew.

All very hard concepts for a little girl comprehend.

So when she inquired about the part in the video where the little girl dies, I cringed a bit hoping she doesn’t say that loudly in line at Target because she has been coming up with some good ones in line at Target lately… but it was my husband’s words that brought on uncontrollable tears and sent me out of the room in search of clarity.

Without skipping a beat her wise daddy replied, “No honey, this is the part where she has a beautiful life.”

His words just kind of hung in the air with weight and value that I needed to process alone — to better understand more about the part where you have “a beautiful life.”

Lately I had been stuck in the part where Matthew was sick and died — another
anniversary marking the day cancer took my boy was taking me to extra special places of negativity. Another first was approaching with a swiftness down our road of grief — “a first” I was trying to not let matter, but it kept etching away at my thoughts anyways. Last Monday was not just the day my boy died; it also marked a certain increment of time. Matthew has now spent more years out of my arms than I was allowed to have them wrapped tightly around him. He never got to be 3 years old, but he does get to be three years dead.

All hard concepts for a mother of any age to even want to understand.

I stumbled into a dark room feeling my warm never-ending tears fall. I let Ron’s words sink in and guide my heart towards healing. “The part where you have a beautiful life.” It seemed so loud and far more relevant than all the other parts of life — being born and having to die are experiences that will happen to each one of us, experiences in life that when they do in fact come we have little control over. But the part where we have a beautiful life, that’s the part we get to choose — the who, the when, the how — it’s where humankind still thrives no matter how ugly life is.

My Matthew was born with cancer. Everything about children having to fight cancer is fairly ugly in regards to how hard these little ones must fight, how it tears families apart, how cancer kills ones hopes and dreams. I despise and loathe that about cancer, but everything about the person my Matthew was and is I find very beautiful. His life was one that still radiates beauty into this world and somehow I was chosen to be the one to give birth to that most beautiful life force. Me. It was me who was chosen and given the privilege of being called Matthew’s mother.

It is a beautiful honor to be the caregiver to a cancer warrior.

When the third anniversary of Matthew’s death finally came, I woke up angry. As soon as my eyes opened I closed them and prayed to the God I know, reminding him of his promise he made to be near to the brokenhearted because my heart felt especially broken that morning.

Three years of being a mother to a child who does not exist in this world is just not what I envisioned motherhood to be. It’s all really just that simple. I want my baby back. It’s a want I can’t have and can’t satisfy. It’s like when you go without eating. You feel hungry and that can make you grouchy and left feeling unfulfilled. And on the third anniversary of Matthew’s death I felt famished.

I wanted to post something on Facebook that spoke about that hunger and of that wonderful child I got to call mine, but the words that came seemed cheap and ordinary… and I just felt like I had nothing good to say. Slowly I began to commit myself to just having a crappy day filled with crying, heartbreak and despair. It would have been loads of fun for a grieving mom like me, but then something beautiful happened.

I began to get text message after text message of encouragement and affection. Beautiful flowers arrived and Matthew’s Facebook page was filled with so many heartfelt messages of love and remembrance of my boy who spent nearly every day of his life in a hospital fighting cancer — the boy who hardly had the chance to meet anyone but whose beautiful life inspired thousands to live better.

Those powerful words of adoration and remembrance are a universal language
every grieving mother yearns to hear. Thank you for speaking them.

Ron also took the day to keep on his “saving the family” roll and decided he would close up his store and we would spend the day our family lost Matthew at the beach. The kids liked his idea for the day way better than mine, and in all honesty I was glad to follow his lead.

And what a day at the beach it was. The beach is always a new opportunity to add to my sea glass collection. The kids love helping, and for the last few months we have been on a special hunt for a piece of glass that is heart-shaped. Though I never turn down a piece of sea glass and will always have room for one more, I recently was exposed to another collector of sea glass who had the most exquisite collection of heart-shaped sea glass, with each piece was so unique and beautiful, tiny fragments of multicolored hearts. I instantly fell in love with the thought of my very own collection of broken heart-shaped sea glass. This specific quest had been going on for months without any success, but on that day glimmering in the water was a perfectly heart-shaped piece of green sea glass. My eldest daughter looked so proud when she placed it in my hand she — a gift for her mother, one she knew I had been searching for.

Lily also caught her first sunset. She patiently waited until not a sliver of sun was left, not wanting to miss a moment of its glory. Though there is something magical about watching the sun go down, it’s not nearly as magical as watching your daughter’s face as she discovers the splendor in her first.

husband and daughter on the beach
There are parts of my life I would not judge as being beautiful. Some days it all feels very ugly and dark, but every day, opportunity to find beauty awaits me. My circumstances are not what make my life beautiful; beauty lies in the eye of the beholder, and I am the beholder in my life, the only one able to appreciate the beauty still growing around me. Certainly, some days take an effort to find shimmery and beautiful moments, but
collectors are choosers.

It’s a choice I have — to collect these beautiful moments. Some days I come up empty handed, but other days I come up double fisted, and it is those double fisted days that have me addicted to finding more beautiful moments.

The Mighty, in partnership with Fuck Cancer, is asking the following: What’s the best advice you’ve gotten or a mantra that spoke to you following your diagnosis?  Find out how to email us a story submission here.

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Those 'Normal' Moments Become the Most Memorable When You Lose a Child

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When your child dies, you are forced into a new way of being no one would ever choose. It feels like you are suddenly stranded in a desert of pain where all you can do at first is live in the past and the memories of times when your family was whole.

We all have those big moments in life we will never forget; they are etched into our consciousness as pivotal memories. They may be glorious or devastating – sometimes they are both. I have had many devastating, sorrowful memories I will never forget, the pain will never leave me.

There are images of sorrow and pain so intense they make me cry… every… single… day. I also have many incredible, happy memories — amazing, wonderful moments in time I will hold onto forever and cherish with all my heart.

But in between, I remember days and months of glorious un-eventfulness, filled with ordinary moments. These are the ordinary moments we tend to take for granted and not give a lot of thought as we go about our busy lives. But if you really consider it, these everyday moments are the foundation of our life; we may not recall every one in vivid detail, but they make up the background of our lives and are very special.

These quiet moments help shape who we are and how we think as we navigate through life. How I treasure those ordinary family moments when we could pretend that cancer never opened its dark door.

If you knew my son well, you would probably agree he was the king of derpy faces and he had a sarcastic wit. In so many of the pictures I took of him as a teenager, at the very last minute he would make a face. I would get so mad at him for ruining all the pictures. He would just laugh mischievously and give me the perfect smile, until I tried to take another picture and then it would repeat – much to my frustration!

author's son making funny face

I have a whole series of funny face pictures he took on my phone one day to entertain himself as we made the familiar drive home from the children’s hospital after he had received outpatient chemotherapy. At the time I chastised him good-naturedly for putting 30 funny face pictures on my phone!

I never really gave much thought to these imperfect images at the time. You see, I fully intended to delete them from my phone. After my son’s death as I frantically searched through all my pictures and memories, I discovered something quite astounding. These candid, “derpy” pictures are some of my most cherished! They really show my son’s funny, zany Noah self. I see his spirit so clearly in these pictures — how he used humor to always get through the rough patches.

Who knew at the time these things would become some of my most treasured memories?

Who knows what some of your most treasured memories will be as well?

So enjoy your “normal”; treasure it and realize the significance of a kind word or gesture and of just being present when you are tired and stressed after a long day. Really notice your “normal,” and you will see how wonderful your life really is.

Life can change in an instant — cancer steals this glorious normal from too many of us. Enjoy a normal day so many people fighting this battle would give anything to have back. Life is never normal after cancer; it is learning to survive and knowing you will never, ever live the life that you want most.

So enjoy every minute, and may the derp Gods be with you…

Follow this journey on Noah’s Blue Ribbon Brigade.

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To Those Who Saved Us While We Saved Our Son

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It’s been one year, nine months and four days since our worst fears became a reality. Our 4-and-a-half-month-old little boy was diagnosed with cancer. We had just transferred to a new city miles away from our families, and within two months we got this news. Feeling alone was an understatement.

But then there was you. All of you. All I remember is after a week of being in the hospital and feeling so helpless, I created a fundraising page for CureSearch to help raise money for research. I posted it to all the social media groups I had, old and new, and this miraculous thing happened. You.

baby bradley

You didn’t even know us but started donating for a cure. You started bringing us meals that we looked forward to over fast food for the 18th night in a row. You mowed our lawn and collected our mail. You sent well wishes and kind words to lift our spirits on bad days. You came by just to get me outside that room for the first time in three weeks. You brought our son toys because he couldn’t even leave the hospital room. You sent packages that scraped us off the floor when we thought we couldn’t go on. You brought joy to the whole oncology floor with dinner and cookies. You brought coffee when you know sleep was nonexistent. You were so far away but you always let us know you were there. You… you saved our lives.

Looking back on that first year, I honestly don’t know how we spent over 125 days in that hospital room. Even when we came home for a day or two you were still there, offering groceries and meals since you knew we had nothing. Even now when things are good you still brighten our days by cheering on Bradley on his Facebook page. You made his birthdays that much more memorable since he couldn’t have big parties. And you continually shower us in love, always offer a hand, and pray with us when we are scared. You are a true hero.

I don’t know if I’ll ever be able to thank all of you enough. From the bottom of my heart I don’t think we could have gotten through all this without you. We may not have kept in touch and for that I am so sorry. But please know I will forever be grateful for your kind gestures and acts of love.

They say it takes a village to raise a child. In our case, it took this amazing community we became a part of. Thank you for saving us, and for saving our son.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. Check out our Submit a Story page for more about our submission guidelines.

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When I Said the 'Wrong' Thing to a Cancer Patient's Parent

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It was just before Christmas and my son was in the hospital for a suspected virus. A local church was holding a gift bazaar in a conference room of the hospital so all the kids who were hospitalized at Christmas time could pick gifts for their family members and have them wrapped. I stood in the wrapping line and struck up a conversation with the woman next to me. We swapped stories of why our children were in the hospital. She told me her daughter was a cancer patient and that she had been in the hospital three weeks out of every month since spring.

I gasped, “Oh my gosh, that’s awful, I’m so sorry!”

The woman looked stricken. I realized too late my dramatic reaction was like an assault to her. In a bitter irony, not even a month later it was my child on the oncology floor fighting cancer. I learned then a whole list of well-meaning phrases that don’t always sit well with parents of sick kids.

Here are some of the phrases that struck a nerve:

  • This too shall pass.
  • God won’t give you more than you can handle.
  • You’re so strong.
  • I could never do what you’re doing.
  • My cousin (or aunt or other distant relative) had that same thing.
  • I know how you feel.
  • He’s so lucky to have you as his parents.
  • Is this terminal?
  • I’m worried about you.
  • You look tired.
  • Have you tried essential oils (or marijuana or alternative medicine)?

What to say instead:

  • Do you want company?
  • Could I bring you coffee or a snack?
  • I can give you a break if you need a nap.
  • I can listen if you want to talk, but you don’t have to if you don’t want to.
  • What can I pray for?
  • We care about you all.
  • Can I bring you a meal?
  • I can help with ___ (be specific).

It’s easy to stick your foot in your mouth and say the wrong thing, so don’t beat yourself up if you don’t get it right. The really important thing is to be there for them and give support throughout the duration of the illness.

Lead image via Thinkstock.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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