It's Wasn't in Her Head! She was sick!

Join me on the more than 4 year journey of searching for answers as to why my daughter was sick and life after diagnosis. Misdiagnosis after misdiagnosis, gaslighting, but never giving up hope.

1. Beads of Courage
Madison wearing her Beads of Courage. There's a bead for something medical that she has been trough. — Madison in 2021 wearing of Beads of Courage

My name is Socorro and my daughter has a long list of diagnoses including but not limited to MTHFR, hEDS, MCAS, POTS, and abdominal vascular compressions. It took years, lots of emergency room visits, procedures and surgeries to get to where we are today which is waiting on another surgery. I shed a lot of tears, prayed a lot of prayers, had long hospital stays in other states with Madison while leaving my husband and 2 other children every time, and I’ve had to do a lot of research. I’ve also met a lot of other moms fighting for their sick child just as I was/am. I will explain the acronyms in later posts!

I can honestly say that I have no idea what I’m doing right now with a blog. I just know that there are others that may be going through what we went through and if this can help anyone, then me doing this is worth it. Awareness is needed. I know Madison put herself out there on social media (mads version☆ (@madisonbernardd) | TikTok) and mads🫶🏼 (@madison_bernard) • Instagram photos and videos ). She has helped so many girls to get diagnosed by sharing her story. Maybe a mom’s perspective will be good too. I’m no writer, so bear with me please!

Sharing the Journey

I guess my plan is to write about my journey, our journey really. When you go through something like this with your child, it’s not just them going through it, although it is. Their pain, suffering, anxiety from the unknown becomes yours. Having doctors tell you they don’t know what’s wrong, that nothing is wrong or that’s it’s in their head is just not acceptable. Thats when a mission is started and a mama lion (that’s what we call ourselves) is born. Yes, as moms we all want to protect our children and will do whatever we can, but this kind of thing takes it to a whole new level. Watching your child go through something with no end in sight is gut wrenching. Trying to hold it together becomes a daily goal.

Sick or Not Sick?

I know Madison. I know her dreams and her fears. I know her faults. And I know that when she says she doesn’t feel good, she doesn’t. There’s no exaggeration. No drama. It’s the truth. I’ve always believed her. I wish that I could say the same for everyone else. There were times that I would get told I shouldn’t bring her to the emergency room by family. I was also told that I shouldn’t ask for prayers on Facebook or tell people what was going on with her. Why? Because she was probably being dramatic. Did I listen to that? No. Did it bother me? Absolutely. Not only was I concerned with her physical health, but her mental health now too because how many times can you hear that you’re doing it to yourself from a healthcare professional before you start to believe it?

It’s Been a Wild Ride

I haven’t decided how I will attack this blog yet, as there’s years of office visits, procedures, and surgeries behind us. I watched Madison go through unbearable pain, uncontrollable vomiting, not being able to eat, missing school, losing and gaining friends, missing big events at school like Homecoming, getting accepted into the Disney College Program, but having to leave early due to her health, having to switch from going to physical college to attending college online, being misdiagnosed with things like exercise induced asthma and Leukemia, being told its in her head, that hopefully she will grow out of it, that she didn’t’ have MALS or Nutcracker Syndrome, that if she gets on TPN, she needs to just be put on hospice at the same time, losing a surgeon when so close to getting surgery, you get the picture. I watched her go through all these things with a smile on her face and wrapped in her faith. Prayer and music became her therapy.

I watched myself turn to God, begging for answers and healing. Trying to so hard to accept whatever outcome we may get. I definitely turned to food and put on the pounds, I have PCOS so it doesn’t take much to make me gain. I didn’t want to exercise as I was physically and mentally drained. I wanted to be alone most days except for my husband and kids. I hid my tears from everyone. Prayer and music were also my therapy. Would anyone help her?

Life Still Had to Go On

Balancing life, family and taking care of Madison became a normal part of life. I was helping to get a retreat started in our church parish and teaching CCD (religious ed) through most of this. It definitely helped me, although it was hard at times. Oh, did I mention that a lot of this happened during Covid?! I feel like I constantly have a million tabs open in my head and here I am adding another one!