::

Can I tell you something? It’s really important. And it may come as a shock to you. But…

Life is unfair.

I know, right? Such bullshit.

Bad things happen to good people. Things change. People change. You lose. You fail. You aren’t always given what you think you deserve.

I spent a good share of time self loathing about all the ‘bad’ things that happened to me. I took everything that happened to me that was negative and let it breed more negativity.

“ I am fat. I always will be. Let’s get chinese.”

“I didn’t make dance team. The judges just don’t like me. I will never dance again.”

“ I am depressed. I have anxiety. I have ADHD. WHY do my mental health genes SUCK? Thanks, parents and DNA. I’m doomed to be a sad girl scared of social situations and not be able to focus enough to find a solution for any of this.”

You get my point.

But the best example of my blame game I can give you was when my son got diagnosed with a life threatening, chronic autoimmune disease.

December 14th, 2011 my life forever changed. You want to talk about unfair? A child just shy of his second birthday being diagnosed with a condition you’ve never heard of, and told that it can be life threatening.

Are you kidding me? We were just at Disney World last week. If only I had known, I wouldn’t have said no to the second Mickey bar. I’d have stayed and watched the fireworks show, instead of wanting to beat the crowd leaving the park. Take me back. I’ll do better. Wake me up. Someone fucking wake me up.

But I didn’t wake up. I was living a nightmare. I was numb. It’s an indescribable feeling that only those who have been through it can describe. I am sharing below my original post discussing that time. I was still raw. And I can hear it in the words. But it is my example of turning a mess into a message.

:::

People always talk about God.  I was raised in a family that went to church, but weren’t overly religious. I never really was forced to answer the age old question,”Do you believe in God?” until December 14th,2011.

That day is imprinted on my brain, like a song you can’t get out of your head. And not a good song, like old school Britney Spears or Journey- Like the Barney song. Make it stop. Please. I remember every single detail and every single  slow moving second of that day. I remember the what seemed like thousands of needle sticks it took to get one tube of blood from my screaming baby. I remember the hushed whispers and the unspoken sad glances. I remember the hours spent speculating, as to what could be causing my loving, playful boy to suddenly be fighting for his life. The image of my precious baby laying in the bed in the Pediatric Intensive Care Unit with wires, tubes and monitors on him will haunt me forever.  I remember the looks on the doctor’s faces. The ones you see in the episodes of Grey’s Anatomy when the character is thinking, “This kid might not make it”.  I remember the nurses preparing me for the worst. I remember hearing the nurses whisper at shift change, “If this blood transfusion doesn’t work, this boy probably won’t make it through the night.” But of all the things I remember, the most vivid memory I have is the sense of fear, confusion, and the anger.

Someone tell me what is going on. An Oncologist? Why? Isn’t that cancer? Someone come tell me what the fuck is going on. What’s hemoglobin? Blood transfusions? I don’t understand. Someone make me understand. Someone make this go away. Can I leave? Can we just leave and pretend this never happened? I want my mom. Someone please call my mom. Wait- I am the mom now. This is my job. I need to fix this for him. Why can’t I hold him? Why on earth is no one telling me what is going on? I’m going to punch someone if they tell me, “The doctor will be in soon to give you peace of mind.” Fuck Peace of mind. Give me answers. And a hug.

On that day, my son, Parker was diagnosed with a rare blood condition. There is no cure. It so rarely happens in children, that there is hardly any information on it.

When the attending doctor in the ER at Children’s hospital saw his hemoglobin level (2.9 at time of admittance) he couldn’t understand how my precious boy was not in a coma or suffering heart failure. My life had  been changed in that second. Now what? Now what happens?

Over the next 11 days, Parker underwent blood transfusions, countless blood draws, massive amounts of medication, and hours of doctors and nurses coming in and out with no answers.

“We just have to hope the blood transfusion helps. We will know more with tomorrow labs.”

I don’t want to spend one more night here. Fix him. Fix him now. GOD where the HELL are you? Isn’t this your job? DO SOMETHING.

“ He’s not responding as well as we hoped to treatment. We need to give him more steroids. More blood.”

I can’t watch them stick him one more time. I need to get out of here. I can’t be strong. I am NOT strong.

“This looks like it is the chronic form. He will deal with this his whole life. It is not going away.”

Wait? You can’t fix it? What do you mean his whole life? Is this what his life will be like? Why? This is not fair. He didn’t do anything. What did I do wrong for God to punish him? Where the HELL are you God? I’m still waiting for some answers.

Our life was now living and breathing waiting for test results. In between endless wagon rides around the 4th floor and playing in the playroom when Parker was up for it, we were just floating through the days and nights waiting for the next lab result.  I was a complete mess.  I felt as I had lost all hope and faith in God. I questioned if there even was a God. If there was, he doesn’t play fair. This isn’t right. No just God would do this to a baby.

But through it all, I found my two year old comforting me. I’d wait until I thought he was asleep, and I would just sob. Every time, as if he knew my fear, I’d feel his tiny hand on mine squeeze, as if to tell me, “It’s okay, Mommy.” I  have watched my son fight to overcome so much, beating the odds, SURVIVING, fighting back from setbacks and complications. I’ve never seen so much strength come out of such a little person. Being on this journey has been a true test of faith. It’s not always easy to trust when you are afraid. You want so badly to have control of the situation and force the outcome you want.

Have I questioned God’s purpose? Yes. Have I been angry with God? Yes. But even at the darkest of times when I have felt alone, I know now God has been there. I may not have felt it at the time, but looking back, I know that it was God who got us through the tough times and still gets us through those times today.

I went through a period of complete bitterness. I felt that as a Mom, I had let my son down. I couldn’t fix the  hurt with a kiss or protect him from fear or pain. I had no control of the situation. I questioned God as to why he would allow a child, MY child, to go through so much pain and sickness. Instead of praying, I argued. I wouldn’t go around other Mom’s who had ‘healthy’ children. I grew more bitter when other people would boast and brag on how blessed they were. I distanced myself and wrapped myself around the negative, never looking for the ‘good’ in Parker’s situation. To me, nothing good could come out of a situation where my son was having to fight for his life. It just didn’t seem fair!

But, you know what? Good DID come from Parker’s situation. We have been taught life lessons that can’t be found in text books or taught in a classroom. I have learned to be grateful, truly grateful for the little things. Not a day with him is taken for granted. Each day is a gift, One that I’ve feared we wouldn’t get to see. So when I randomly have emotional breakdowns, bare with me. I don’t take birthdays very lightly because I know that every year is a gift. God’s gift. God had every right to tell us ‘no’ when we prayed for him not to take Parker. Instead, he has entrusted me to find the lesson. The gift from the grief.

Am I overly protective? Yes. Because I know that just because he may look okay on the outside, doesn’t mean that everything is okay on the inside. We are never guaranteed that tomorrow we won’t be back to where we were that week in December and honestly, it scares me. This disease is rare and we know that he can relapse at any time, but I also know that God knows what’s in store for Parker long before we do.

On the night we were in the PICU, long after the family had gone home and Scott had fallen asleep, I laid in that hospital bed with my baby. I smiled, but I remember looking up and out that tiny window and whispering to myself, “God if you are there,  show me. Give me a sign.” Parker grabbed my hand almost instinctively and pointed it towards that same window. He held it there for what seemed like minutes, and then slowly rolled over and went back to sleep. I get chills thinking about that moment. It was as if my son had seen God, and was reassuring me.  I know that even though his body isn’t healed completely from disease, that God has helped heal me. My son has taught me more then I could ever have taught him about life.

So if you asked me today, “Do you believe in God?”, I would be able to tell you just how much I do. I see his light in my son’s eyes each and every day.

:::

Looking back, I am grateful for my struggles. My son still deals with his health conditions. We have bad days and we have setbacks.

I am stronger because of this. I have learned how to be strong for others. I have learned that being brave isn’t always big giant victories. Sometimes it’s enough just getting through the day. And most importantly, no matter what your faith or beliefs, life is not fair, but it is a gift. It is not a guarantee. Nothing is promised to you. It is your responsibility to make your life, with all its twists and turns and road blocks, the smoothest, most enjoyable ride. Stop and see the scenery. Enjoy the fresh air. Enjoy the sunny bright days. Find joy in the rainy cloudy days. Weather our storms.  Keep good company. Laugh. Laugh so much it hurts. Don’t waste your days away wishing for a different story or life or situation. Live. Live today.

Yesterday, February 29th, was Rare Disease day.

Although rare disease patients and their families face many challenges, enormous progress is being made every day.

The ongoing implementation of a better comprehensive approach to rare diseases has led to the development of appropriate public health policies. Important gains continue to be made with the increase of international cooperation in the field of clinical and scientific research as well as the sharing of scientific knowledge about all rare diseases, not only the most “recurrent” ones. Both of these advances have led to the development of new diagnostic and therapeutic procedures.

However, the road ahead is long with much progress to be made.

To show support for this cause, visit http://www.rarediseaseday.org/

Originally posted 2016-03-01 09:48:11.