“However long
or dark your night is
Right where you are
That’s where the light is
My love
The sun
Is a reflection
It’s true
We’re one
We are each other”
One of my most favorite songs.
I used to listen to it and sing it over and over at campfires as my limited energy allotted. It deeply resonated. Because however dark or long your night is….. right where you are, is where the light is.
So, a thing happened this week.
My daughter and I have been through so much with her mystery health issues. Especially past fall.
And then… when things were crumbling fast. And helpers (drs) weren’t helpers but turning more insane by the minute. Telling me to give her no attention when nauseous and wanting to throw up. Send her to room and tell her to rest and not come out till she feels better. I was given specific instructions of how to navigate this psychologically with her. Keep in mind I’m a mother of nearly 20 years and quite familiar with how to not feed children’s attention seeking situations. Keep in mind this is a well sought after PEDIATRIC GI specialist at a top Chicago hospital.
K.
So, yeah.
I realized, we are f*****.
And then
Connections came into play.
I used my limited energy to look into this new pediatrcian an hour away that entered my sphere of awareness. And I had to play many games. With my husband. Family. Current pediatrician of why I would want my daughter to see this woman. But I heard so many amazing stories, I knew I had to give it my best shot. This is a sinking ship. Getting phonecalls from school superintendents over absences (she did have a 5 week awful chest bug that turned into pneumonia but still, the pediatrician hardly tried to assist us with school. My daughter was vomiting with a high fever at 5 am one morning after just days before testing negative for an infection snd then boom. There it was and she was allergic to first two antibiotics but third one was a charm. This pediatrician tried to send her back THREE days later to school 😅😅😅 not sure if she’s ever had pneumonia. Anyways…. I became disenchanted. Disillusioned. I made the appointment before all of this and let my husband know my thoughts and tallied his concerns. So for 2 months I had no expectations but was silently anticipating this visit.
Her current pediatrician had referred her to an allergist. In November for high eosophinils and low platlets. But it’s no big deal she says. “Probably just allergies”. Days before this appointment, I found out this allergist dr guy is being investigated for fondling women. Look at reviews online too. Nope. Cancel. Everything is a jungle anymore.
So, I was taking a chance by canceling this and putting my eggs in one basket with this new pediatrician.
The night before I wrote an email. I figured it wouldn’t be read but gave a summarized quick account of reason for our visit, why I can’t be there and some facts pertaining to my pregnancy.
I pressed send.
And gave it to God.
I can’t be there.
My husband doesn’t want to be there and won’t share much. It’s a theme with him at her doctors visits. My daughter doesn’t want to go. I have to sell this to her. This could be a helper. And we need helpers for when your tummy and head don’t feel well etc. I sent all the labs I could obtain despite being bedridden.
And all of a sudden,
I received a phonecall at 5:30 pm.
It was her nurse.
She called to give me a summary of my daughters visit. Details. They received my email. The dr wants to inform you she strongly suspects congenital Lyme disease in your daughter.
And like that…. 8 years of my life …. Was validated. Because unless you understand, which some of you may, you cannot understand the bricks on your shoulders when you’ve known this to be so for most of your child’s life but have to mostly keep quiet or else you get in trouble by family and the medical establishment.
It was also heartbreaking. And I’m still processing it. She of course doesn’t know. I had to play my cards carefully so my husband wasn’t too angry at me for it. So we mostly cannot discuss this topic. It’s the same with my family. Yet, I don’t give a f anymore. Because now I can know my daughter is receiving the treatment she needs. They can call it whatever they want in their states of denial and dissonance. I don’t care anymore. Because this dr knows and sees what my daughter is facing.
In 2016, upon the realization her and I were both falling unwell, it would take an entire book for me to explain my actions and emotions that year. I stayed up late researching cures for her whilst escorting her to ers for strange things. And I started figuring it out for her. She started making a turnaround in January 2017. And sadly enough, that was when my serious demise began.
So, to think…. After all of these years, if something happens to me, she now is in good hands…. Is so liberating and incredible…and so many things that words can hardly suffice. Although I have mentioned to my family and husband on multiple occasion…. Very carefully…. That it needs to be noted my history during her pregnancy if anything ever happens to me and to never give up finding her help….. not much came out of it except the normal reactions of anger and disbelief from them. It’s honestly like AIDS circa 1980s all over again.
So, God sent me a breakthrough you guys.
God sent my daughter a breakthrough.
What this means to me and her is indescribable. Amazing tests have been ordered. She is adding some things to what I was already doing with my daughter and seemingly wants to work synergistically with me. My husband said she PRINTED my email and had it in her hand and was referencing it the entire appointment 😳
She has layers and methods of how she wants to address this. She had her nurse call me without anyone asking her to do so. No one ever includes me in this no matter how much I ask 😭 I felt so equal. I felt like my daughters mother taking her to a dr appointment in the capacity I can.
It’s going to be a journey guys.
No sugar coating any of it.
But
I found a helper
And God works in mysterious ways.
My daughter doesn’t have to be gaslit anymore 😭😭 like I was. She’s going to be listened to. We are going to do everything possible to prevent what has happened to me in her. It’s happening. The helpers are arriving for her. 🙏
or dark your night is
Right where you are
That’s where the light is
My love
The sun
Is a reflection
It’s true
We’re one
We are each other”
One of my most favorite songs.
I used to listen to it and sing it over and over at campfires as my limited energy allotted. It deeply resonated. Because however dark or long your night is….. right where you are, is where the light is.
So, a thing happened this week.
My daughter and I have been through so much with her mystery health issues. Especially past fall.
And then… when things were crumbling fast. And helpers (drs) weren’t helpers but turning more insane by the minute. Telling me to give her no attention when nauseous and wanting to throw up. Send her to room and tell her to rest and not come out till she feels better. I was given specific instructions of how to navigate this psychologically with her. Keep in mind I’m a mother of nearly 20 years and quite familiar with how to not feed children’s attention seeking situations. Keep in mind this is a well sought after PEDIATRIC GI specialist at a top Chicago hospital.
K.
So, yeah.
I realized, we are f*****.
And then
Connections came into play.
I used my limited energy to look into this new pediatrcian an hour away that entered my sphere of awareness. And I had to play many games. With my husband. Family. Current pediatrician of why I would want my daughter to see this woman. But I heard so many amazing stories, I knew I had to give it my best shot. This is a sinking ship. Getting phonecalls from school superintendents over absences (she did have a 5 week awful chest bug that turned into pneumonia but still, the pediatrician hardly tried to assist us with school. My daughter was vomiting with a high fever at 5 am one morning after just days before testing negative for an infection snd then boom. There it was and she was allergic to first two antibiotics but third one was a charm. This pediatrician tried to send her back THREE days later to school 😅😅😅 not sure if she’s ever had pneumonia. Anyways…. I became disenchanted. Disillusioned. I made the appointment before all of this and let my husband know my thoughts and tallied his concerns. So for 2 months I had no expectations but was silently anticipating this visit.
Her current pediatrician had referred her to an allergist. In November for high eosophinils and low platlets. But it’s no big deal she says. “Probably just allergies”. Days before this appointment, I found out this allergist dr guy is being investigated for fondling women. Look at reviews online too. Nope. Cancel. Everything is a jungle anymore.
So, I was taking a chance by canceling this and putting my eggs in one basket with this new pediatrician.
The night before I wrote an email. I figured it wouldn’t be read but gave a summarized quick account of reason for our visit, why I can’t be there and some facts pertaining to my pregnancy.
I pressed send.
And gave it to God.
I can’t be there.
My husband doesn’t want to be there and won’t share much. It’s a theme with him at her doctors visits. My daughter doesn’t want to go. I have to sell this to her. This could be a helper. And we need helpers for when your tummy and head don’t feel well etc. I sent all the labs I could obtain despite being bedridden.
And all of a sudden,
I received a phonecall at 5:30 pm.
It was her nurse.
She called to give me a summary of my daughters visit. Details. They received my email. The dr wants to inform you she strongly suspects congenital Lyme disease in your daughter.
And like that…. 8 years of my life …. Was validated. Because unless you understand, which some of you may, you cannot understand the bricks on your shoulders when you’ve known this to be so for most of your child’s life but have to mostly keep quiet or else you get in trouble by family and the medical establishment.
It was also heartbreaking. And I’m still processing it. She of course doesn’t know. I had to play my cards carefully so my husband wasn’t too angry at me for it. So we mostly cannot discuss this topic. It’s the same with my family. Yet, I don’t give a f anymore. Because now I can know my daughter is receiving the treatment she needs. They can call it whatever they want in their states of denial and dissonance. I don’t care anymore. Because this dr knows and sees what my daughter is facing.
In 2016, upon the realization her and I were both falling unwell, it would take an entire book for me to explain my actions and emotions that year. I stayed up late researching cures for her whilst escorting her to ers for strange things. And I started figuring it out for her. She started making a turnaround in January 2017. And sadly enough, that was when my serious demise began.
So, to think…. After all of these years, if something happens to me, she now is in good hands…. Is so liberating and incredible…and so many things that words can hardly suffice. Although I have mentioned to my family and husband on multiple occasion…. Very carefully…. That it needs to be noted my history during her pregnancy if anything ever happens to me and to never give up finding her help….. not much came out of it except the normal reactions of anger and disbelief from them. It’s honestly like AIDS circa 1980s all over again.
So, God sent me a breakthrough you guys.
God sent my daughter a breakthrough.
What this means to me and her is indescribable. Amazing tests have been ordered. She is adding some things to what I was already doing with my daughter and seemingly wants to work synergistically with me. My husband said she PRINTED my email and had it in her hand and was referencing it the entire appointment 😳
She has layers and methods of how she wants to address this. She had her nurse call me without anyone asking her to do so. No one ever includes me in this no matter how much I ask 😭 I felt so equal. I felt like my daughters mother taking her to a dr appointment in the capacity I can.
It’s going to be a journey guys.
No sugar coating any of it.
But
I found a helper
And God works in mysterious ways.
My daughter doesn’t have to be gaslit anymore 😭😭 like I was. She’s going to be listened to. We are going to do everything possible to prevent what has happened to me in her. It’s happening. The helpers are arriving for her. 🙏
