isolation

At 9 pm, she was sleeping on me. In a quick moment and a peck on the cheek I realized that she was far too hot. Mabel's fever spiked to 102.6 and I headed to the emergency room.

As the rain pounded down around me, my heart pounded at the knowing. Knowing that going in here would mean trying to explain Mabel and all of her history within a brief few seconds and I didn't have patience or energy to do so. She screamed. In my mind, I screamed. I quickly explained in a panic that Mabel has epilepsy and possibly an undiagnosed condition; we are in the process of testing. I explained that her amino acids and enzymes are off in her blood work and that all I need is for her to be seen for a possible sinus infection like my other kids and that I couldn't take any chances with her being sick-she's just too fragile.

"Any specific medical history?" the nurse asked. "Too much to tell you now," I replied. She got me in a room quickly and Mabel's fever was still 101.5. I had given her Tylenol before I left the house and I knew the screaming and the fever would subside soon. I tried my best to explain that most of this screaming was from her teeth--it happens almost every night.

She couldn't breathe. I can't console her. Her body is flailing. I would swaddle her but she's already too hot. The frustration and sadness poured into my spirit quickly.

After the Dr saw her she agreed that it was upper respiratory and that she would put her on an antibiotic because she understands my concerns.

They wanted to keep us until her fever was under 100. I waited twenty minutes with my hot, limp baby in my arms; trying to console her and trying to hold back tears of fear. The only energy I could muster went to silently saying, "Oh God..." in desperation. 'I can't believe this is happening.' Not the fever. Not the ER. Those are normal mom things. But I can't believe that I'm here with this baby....

As I'm thinking all of this, the nurse peeks through the door. She asks, "Was Mabel premature?" Nope. "She's so little...she's not even on the chart" I know--we're doing metabolic testing. "Ok. I just can't believe she's that small, that's all."

And less than two minutes later, the Dr. opens the door. "Do you know what her weight was at her last Dr's appointment?" The same. 13 pounds. She hasn't gained in 4 months--that's part of our concerns. "...and she wasn't premature?" No. "And there were no complications with your pregnancy?" No. And the isolation sets in as she walks out...

No one understands me. Even the people here who are supposed to be helping me are somehow making me feel like I am not doing enough. Or like I did something wrong. Whether it was their intention or not, I began feeling like I was being questioned about the weight, and in turn the health, of my mystery baby. And then I remembered reading other moms talk about this feeling of being so alone.

I'm doing all I can for Mabel and it doesn't seem like enough. Imagine for a second, sitting down to feed your 10 month old and watching her tongue thrust out 50% of what you feed her. And you are only feeding her because you know you have to--not because she shows you any signs that she's hungry. Imagine feeding your 10 month old 4 oz bottles but it takes 30 minutes for her to drink it. These things may be nothing--but they could mean everything. Imagine feeling like nothing you are doing is helping your child and nothing is making the people around you see how desperately lonely that makes you. Imagine how wrong it feels to pray to God that you would find something wrong with your baby just so you'll be validated in whatever is going on. Do you know how sick and twisted that feels?

What I'm most desperate for is for everyone around me to just listen and validate how I'm feeling. It doesn't really matter if those nurses or Dr's were trying to make me feel that way or not--the point is, that's how I felt. I can't change it. It just was.

I came home and collapsed onto the steering wheel in our van and cried a deep, hideous cry. If I could just have a pamphlet or packet of information that I could hand to every individual that we see that would explain Mabel, that would make things so much easier for me. For all the people who aren't validating my feelings; you're isolating me. I am pulling away and although I hate it, it's happening.

For all of you who are validating me and aren't making me feel like I'm just 'over thinking' this or focusing on it too much-thank you. You are pulling me through each day.

Soon enough I feel like we will have answers and I will be able to say "Told you so" to all of the people who have made me feel like I am wrong or over-exaggerating. It's really not that I care because obviously I'm her mom and I spend every minute with her. But it is not a good feeling to be second guessed or questioned over the most important thing in the world.

So Im growing thicker skin. I'm rising up and I'm going to learn how to navigate these waters. I am educated and quick. I am smart and capable. I am going to distinguish between what is important and who is not helping. I am going to weed through the things that are good to focus on and disposing of the rest. Mabel is an individual. She is herself. Each and every symptom of Mabel has to be separate from anyone or anything else. I am looking at her as an individual and will continue to do so until we figure out this special little mystery. In the meantime, I may become resilient. Or I may become bitter. But I'm going to feel whatever comes at me wholly and completely because it is part of this journey for me.

So fasten your seat belts and ride with me til the end or I can ask the carni man to stop this thing right now so you can jump off. Either way, my seat belt is locked and stuck. I have to brave up and finish. I'll either see you at the end and tell you about the wild, crazy experience that you will never understand. Or you can hold my hand as we get off the ride together; knowing the details of each and every turn, the stomach in our throats feelings, and the experience that changed us forever. Whatever you decide, I do not blame you. I will continue to love you.

I just need to be ok.

*Mabel's fever came down and she is on antibiotics. I'll keep you updated on her. Nora and Braden are both on antibiotics as well and are still not feeling well. Prayers are appreciated!