They took him out of my arms, as they said you can watch through this window.
I felt sick to my stomach.
I couldn’t watch anymore, as they strapped his tiny ten pound body down to the cold metal table.
I could barley feel my legs beneath me.
I slid down the wall and curled up, put my head on my knees and as I cried I prayed as I never have before.
I knew at that moment that my life was about to change.
That his tiny painful cries would stay with me forever. The agony I felt was like no other. It was deep, dark and uncontrollable.
For a moment I felt like I had to be in someone else’s life.
How Could This Have Happened?
How could this be my life?
We were supposed to be home enjoying the first weeks of having our first baby. Hours later the doctor came in.
He had no answers, but simply said “We’re John Hopkins, we are the best of the best and we will find out what is wrong with your son. As of now we have no answers and are very unsure of the course of treatment.”
I thought that the pain I felt in those moments were deepest I could ever feel.
However, the next day the doctor came in. One glance at the look on his face and I could feel my knees shaking again.
I knew it wasn’t good and I was trying with everything that I had in me not to burst into tears before he even spoke.
My right hand gripped the crib rail on the hospital bed as my other held his tiny six week old hand.
I just stared at my son’s face, I couldn’t bare to look at the doctor, of course looking at my beautiful baby boy was just as painful because his the skin on his face was peeling and his eyes were swollen shut.
From head to toe his skin was cracking, covered in a rash and looked as if he had been badly burned.
Within twenty-four hours we had every test ran, multiple doctors from every specialty.
We Still Had No Answers
They didn’t even know if they should have admitted him to the PICU or the burn unit even though he wasn’t burned, but his skin was as if it had been.
As the doctor began to speak it felt as if my life was over. He said to me with sadden eyes:
“We have yet to find out what is wrong with your son, there isn’t much more we can do. The medications are not working. We don’t know what we are treating. We are not giving up yet, but if you planned on having him baptized you should do it now. We can send the Chaplin up if you wish. You should prepare yourself.”
I could barley speak, it had been as if someone had just punched me in the gut and I was gasping for air.
As I was waiting for someone to save me, but I couldn’t be saved.
I said “yes please send one up. He needs to be baptized.”
My mom was there and just held me not saying a word. She wiped my tears away and said “No, this is not the way this is going to end.”
This Is Not How He Will Be Baptized
“He will be in our church surrounded by his family. He will be healthy and smiling. This isn’t how this is going to go.You need to have faith and hope despite what the doctors say. We are walking out of here with a healthy baby.”
The Chaplin came in moments later.
My mom said the same words to him. When you feel like giving up draw strength from those around you. Let them hold you up when you are falling down.
It isn’t weakness it is a necessity.
We can’t get through this life alone.
In that moment and so many others I drew strength from my mom.
Which now looking back I am not sure how she still had any.
Especially because just six short weeks before this she almost lost me and my son during labor.
She had to live through that. I was unconscious, I have faint memories, but she had to live through that.
The Power of Hope and Praying
Coming from a big catholic Italian family I grew up being taught the power of hope, faith and pray.
I wasn’t a terribly religious person until this.
I prayed. I think all I did was pray.
I didn’t eat, I didn’t sleep, I just prayed.
I didn’t know what else to do besides to give it to god. There was literally nothing that I could do and that as a parent is the worst feeling in the world.
For me the nights were always the scariest.
We were at John Hopkins in the PICU so the sounds in the night were hard.
The sounds were same during the day, but for some reason at night it tended to get darker in so many ways. The sounds of the machines everywhere, the screams and cries from down the hall of the children, of the parents was excruciating.
I thought to myself we just have to make it through the night.
When I heard of others losing their child I felt like a terrible person because all I could do was thank god that this night wasn’t the night he took my child.
As much faith as I had, I still questions, though, on how can these terrible things be happening all around me, to these children?
My thoughts were questioning life amongst many other things kept me up each night.
Everything got darker at night. When the rays of light would beam in through the tiny hospital window in the mornings it felt for just for a second that things were going to be ok.
The Pain Is Still As Real As It Was That Day
As I write these words I can not help but have tears flowing down my face. The pain is still as real as it was that day.
Some wounds heal, others they are too deep to ever heal, they will always be there whether you see them or feel them everyday.
These wounds though are what change you, what makes you the person you are. This story, this experience with my son changed me in ways that I still fully can’t describe.
This was the first time I really felt pain this fierce.
The first time I felt this helpless. And the first time I thought there was no way I was going to be able to be ok. That none of us were.
I thought and I had hoped that this would be the only time I would feel this way or have this experience, but it wasn’t.
It’s Happening Again
Seven years after almost losing my son I was put right back in the same situation with my daughter, except this time was so different in so many ways.
When my daughter Olivia was one and a half she began to get fevers with zero symptoms. They came out of no where and were frequent. Then after two months the frequency increased.
Her fevers became a part of our lives. Every two weeks she would start a fever around 103/104 and it would last 3-5 days with no other symptoms.
Like clock work it would return. I had taken her to see every doctor possible. Doctors from John Hopkins, University of Maryland and other practices.
After extensive testing the only thing that doctors could conclude was that she had Periodic Fever syndrome. Her symptoms or lack there of other than the fever though just didn’t fit into any one of the specific categories for it.
They said to make her comfortable and she may have it for years, but should grow out of it.
A year of fevers past and on June 1, 2019 I took her to the doctors for the 3rd time that week.
I know something was not quite right.
Her fever was lasting longer than usual and she was just different. I had a feeling that something was just wrong, really wrong.
My paediatrician is amazing and she knows me and always said if I had a feeling it was maybe something to look into so she sent us to the emergency room to have some testing done.
An hour later they were admitting us and then in the middle of the night we were rushed to University of Maryland by Ambulance.
We spent three days there and still the doctors had no idea what was wrong with my sweet baby girl. She was just two and so tiny, but yet so very brave.
I think I cried more than she did during our entire stay.
By the third night I was beyond exhausted and desperately needed sleep, but I couldn’t.
I was in that kind of half sleep, you know the one where you’re slightly asleep, but you’re still thinking. I opened my eyes and looked at the clock on the hospital wall.
It had only been fifteen minutes since I checked her temperature and only fifteen minutes I had been asleep if that’s what you want to call it.
It was dark and instead of reaching for the flashlight on my phone and the thermometer that I demanded the nurse give me like a crazy person I just decided to feel Olivia with my hand because well I did just check her fifteen minutes ago and I knew that I was really letting my anxiety get the best of me and there was no rational reason to take her temperature again.
I reached my left arm over onto her forehead, I was laying in the hospital bed with her, she was snuggled up in my right arm. I had long sleeves on because well hospitals are freezing cold.
Plus Olivia tended to sweat a lot especially if she had a fever, so I didn’t want her sticking to my arm and being uncomfortable.
My arm and on my chest was the only place she would sleep.
Anyway, I reached my arm over more than half asleep and put my hand on her head, she was cold.
I was expecting her to be hot, to have a fever, but she was cold.
Not just cold in a normal average, she didn’t have a temperature way.
She was ice cold. I turned on the light, trying to remain calm and not to think the worst.
When the light came on I saw that her lips were purple.
She was white and had no color at all.
I started to call her name and she wasn’t waking up.
I held her in my arms and started to scream as loud as I could for help. I just kept holding her and shaking her and calling her name.
The nurses came running and and I could barley speak.
I said she is cold and purple and not waking up. One of the nurses practically dove behind the bed and hit the code button on the wall.
Which I should have done…in that moment I thought why in the hell didn’t I do that?
She would have got help faster. Maybe if I didn’t fall asleep for those 15 minutes she would have gotten help faster.
Before I knew it the room was full of nurse and doctors.
They took her out of my arms and began working on her. Her IV fell out which meant they had no way of getting any medication into her quickly and her little veins were so broken down. They just kept poking at her while other doctors worked on her.
Finally it was in and they began ejecting medicine.
Other nurses were bringing in warming blankets. They were all yelling and talking so fast. I had no idea what they were saying.
I stood in the corner alone crying, barley breathing myself. I found myself in the exact same spot I did years prior at Hopkins.
Watching my baby fight for their life. She was limp, hypothermic and still unresponsive. It seemed like time wouldn’t move.
I just kept crying and praying.
One of the nurses pulled me out of the room and told me to let the doctors work. She is in good hands. I couldn’t breath myself and could not wrap my head around what was happening in that room. Every second, every minute felt like an eternity.
With each passing moment I felt like I was dying.
The pain was so familiar, but this time I wasn’t sure if I would be as lucky. If we would be as lucky. If it would be ok this time.
How Many Miracles Does One Person Get in One Lifetime?
The sound of the doctors and the machines beeping and people rushing about her room was so crippling. I know those moments went fast but it felt as if I was standing frozen myself outside of that hospital room.
I was begging God again if he had to take someone this day take me and save my sweet girl. I couldn’t even, didn’t want to even imagine a life without her.
The feelings were so parallel to how I felt with Chase in Hopkins.
The doctors had no idea what was wrong with Liv either when she was admitted. In the end they never found out what was wrong with Olivia.
That terrible night she went into septic shock and was hypothermic, but they have no idea why.
Day by day she grew stronger. After a month her fevers completely disappeared.
To this day they have not returned. Which I will always wonder what happened, but as long as it never happens again it is fine with me.
These life events change you as a person and as a mother.
These events changed me for the good and the bad. I feel at least for me I see the world differently, my children differently.
I Take Nothing for Granted
There is a strength that you get from an experience like this, but there are also so many internal struggles one can face as well and not just short term.
Each time my child is sick my stomach instantly becomes sick. I feel myself start to shake and I feel like I can not breathe until my child is better again.
When they are sick I don’t sleep. I check them and sleep with them and hoover over them every moment.
I am more cautious about everything.
I question everything.
On the flip side I learned that I can trust my gut, that a mother knows her child best and that being by your child’s side and fighting for them no matter what the situation is the most important thing you could ever do.
It was suggested more than I would like to admit that I should go to therapy and talk to someone.
Which I did once. I cried the entire time. I actually have found writing and talking to other mothers that have been in similar situations the most therapeutic.
Not that therapy is not helpful, but it just brought back all the feelings and emotions and the images of everything in my head to the point that I was in a full blown ugly cry and could not get out the words.
I told my therapist before I left that it was nice to let it all out, but I don’t think that the feelings I have will ever go away, but I would love to talk about how I can manage them better.
Time is really what heals most things.
Still after all this time it still hurts, but anytime these events cross my mind, I just hug my little ones a little tighter and a little longer and thank God for blessing me with these two and not giving me one miracle but two.
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