#Dday – Painting Butterflies

Trust Your “Mom” sense

Dear Doctor,

Today I am sitting and reflecting over a story I heard. A wonderful family lost their beautiful little boy. Should it have happened? No. Should someone have listened to the mom when she called the nurse line or when she brought him in to the office? YES! Because her “mom” sense was disregarded, it was too late for him. It was too late for the emergency room docs, Life Line, or the Children’s hospital he never made it to. His little body gave out… Imagine yourself in the shoes of the family. Imagine yourself in the shoes of the nurse on the nurse line. Imagine yourself as the doc that disregarded his condition and passed it off as another virus that needed to run its course. Can you imagine? No, you can’t unless you have walked in their shoes.

So, guess what? I am going to be “that mom”. That mom that bugs the crap out of you when my child is sick with unexplained symptoms, with the slight fever that can turn to craziness in moments, and that mom that brings her kids in for the common cold because my one kid has asthma and the other is compromised from a heart condition. Do you know why? Because I am “THAT MOM”. My children are my lifeline and are the biggest part of my very existence. Because of the day we were disregarded about our son’s health and pushed to the side for almost a year when he had a life concerning heart condition. Because of the day we went to the emergency room and was disregarded by the physician as the “mom who cannot get her kid to stop crying.” Yes, I heard you! I heard you when you said to the nurse behind the curtain, “she is one of those moms” and then you sighed as a true sign that we weren’t worthy of your time.

What you don’t know because you didn’t care to listen and because you didn’t care to look in his chart, is that he was a sick little boy. A little boy who was wearing a 30 day event/halter monitor to check for ischemic activity. Because he had been having symptoms mimicking a heart attack. Remember when you disregarded all of those things and many more? Remember when you went to discharge us and hadn’t even examined him? Remember when I questioned you and asked you why? Remember when you got angry and decided to put him through every test known to man EXCEPT for the ones he really needed. EXCEPT for the ones I kept asking about and you disregarded my words. Why do you think I asked to be transferred to a children’s hospital? Because I didn’t want to be the mom who ended up hating herself for not trusting her mom sense. The mom that trusted the doctor when he said nothing was wrong. Why? Because I know my child better than anyone. Because my “mom sense” was spot on and I knew you were wrong.

YOU are the reason children are in danger, not “THAT MOM”. YOU. We put our faith in your hands to care for our children. Well…. no more. Because if you said or did one thing correctly that night, you pegged me as “THAT MOM” who wasted your time.

So, thank you. Thank you for giving me the sense and the strength to go over your head. I am so thankful my child is still alive unlike the story above…

Any mom reading this… I challenge you to become “THAT MOM”. Why? Because she saves the lives of her children.

Sincerely,

THAT MOM

Mourning Our Child

My mind was in overdrive and reading anything and everything I could get my hands on. Everyone, I mean everyone, was offering their opinion… All I wanted to do was find a magic wand and lock myself in a dark room with a nice bottle of red wine. If that didn’t work I was ready to pack the family up and live off the grid!

From family members offering to pray to “restore his genes” to people talking even crazier about replacing his genes, I had enough. Then I read the words “we had to learn to mourn the child we thought we were going to have and accept the one we do have.” Well, those words pissed me off too… excuse my language but I thought to myself, who cannot accept their child and why would you have to “mourn” them?

I thought back to that day in the car on the way home from the hospital. The day when the doc confirmed our son had something going on and told us what he thought it may be. I remember feeling almost relieved, almost happy… I wasn’t sad or mourning who I thought my son was or trying to accept him because of a diagnosis, I’ve already accepted him. I accepted him the day I learned I was pregnant with him and it was more concrete on the first day I laid eyes on him.

That day in the car I chose to celebrate him. I chose to celebrate all that he is. I chose to not accept his heart condition because we would work to keep him healthy and make every effort to give him every chance. I was not in mourning for any expectation I thought I had for my son and I never would be. I knew I loved him unconditionally and so did my husband.

Im lucky… most would say blessed. There will be no mourning in our house only a celebration of life. We choose not to waste precious time or moments dwelling on perfection. Perfection is a state of mind or it doesn’t exist.

Life is seriously too short.

“D”-Day, Diagnosis Day

I remember the doctor’s specific words… “the results will be back in 3-6 weeks, but with the holidays it could take longer.” He also told me to call the office as often as I felt I needed to see if the test results were in, because it is easy to lose sight of them among the hundreds of papers on his desk. He also said to do our best not to research things on the internet, it would only give us worse case scenarios. How could it get any worse than this? NEVER EVER EVER ask that question… NEVER.

It was December 17, 2014. Just days before Christmas and a few weeks before our son’s first birthday. Three weeks fell on New Year’s Eve, 4 weeks fell the day before his first birthday. Oh what a joy the holiday season would bring this year…

Leaving the hospital that day was a haze, but the car ride home I remember vividly. We agreed that in our hearts the test results would come back positive, but a small part of both of us prayed they were negative. Our main concern was his heart… screw the words Williams Syndrome, special needs, different, non-typical, etc… I wanted my son to have a NORMAL heart! I remember praying and asking God to please let him live to be two because I needed him to celebrate his first birthday and his second… I needed more than that but I was trying to barter. Who barters with God?

The next few weeks were filled with questions by our family including the question “should we cancel Christmas?” I was almost offended by the question but quickly reminded myself they were only trying to do what was best for us or what they thought we needed. But honestly I needed Christmas more than ever. I needed NORMALCY. So, I wrote my side of the family a letter to give the on the day we celebrated Christmas. I asked them for 3 things:

Please do not treat us or him any differently. He is the same kid he was a few weeks ago, a few months ago, and the same kid he was the day he was born.
Love us through all of this, because there are going to be times we just need you to be there. No words, maybe a hug or just your presence.
Pray us through it, because we are going to need it. We are going to need faith more than ever.

There was more to the letter but the listed 3 things were the most important. I remember reading the letter aloud to them and also quoting a bible verse that had been passed on to me by family friend. “Trust in the Lord with ALL of your heart, rely not on what you think you know, remember Him in EVERYTHING you do, and He will show you the way” -Proverbs 3:5-7

My letter was followed by a long silence until I decided to break the sniffles with cracking open a few beers, handing them out, and toasting the family into Christmas. Again… I needed to get back to NORMAL.

I called the cardiology office exactly 3 weeks and one day past the 3 week mark. I knew in my bones the results were there and I needed 100% confirmation. I needed to prepare for what was to come. I needed to be in control, in control of something… anything. I needed to CONTROL SOMETHING!!!!

The nurse told me there were no results. She didn’t even ask my name or my son’s name. How could SHE know there were no results? Was she psychic? Was she omnipotent? My response to her, as closely as I can remember, went a little something like this… “I know you are busy and it is the day after New Years, heck you may be tired from all of the holiday fun you had with your family BUT, when I call back tomorrow and ask specifically for YOU would YOU please at least ask my name or my son’s name? Would YOU at least put me on hold so YOU can pretend to care and check to see if his results are in? Because I honestly plan to call daily and ask for YOU until YOU tell me the results are in and put me on hold to speak to the cardiologist for details.” The phone went silent to the point I had to ask if she were still there and of course she started back peddling and apologizing… The only thing I heard sounded like Charlie Brown’s teacher, “wah wah woh wah wah….” I politely stopped her and gave her my name so a return call could be made if need be.

Guess what!? The cardiologist called an hour later confirming everything we already felt in our bones. The test was 100% positive for Williams Syndrome, he had a slight narrowing in one of the main areas of his heart, he was going to need life long therapy and his heart would need to be monitored frequently because eventually intervention would have to happen for him to survive. Again… I heard Charlie Brown’s teacher…

By the time I hung up the phone, we had a follow-up appointment, a list of things I needed to get started on, and a timeline of doctor’s appointments, referrals, etc. I had in my hands a piece of paper that helped me regain control. Whatever that is… Of course I sat in my car feeling paralyzed unable to move, unable to think because the only words resonating were “heart intervention to survive”.

More to come…