The dreaded question

When someone asks me "How are you?" I struggle with how to answer. 1.) Do I flat out lie and say "I'm fine". Do you avoid sharing what is going on truly in your life? 2.) Say it's ok, we're managing. - Which is also partially a lie. Some days I'm ok.. some days I'm not. Some moments I am and some I'm not. 3.) Tell them the truth of what's going on - risk overloading someone, oversharing with someone, or even better.. start crying and make them feel super uncomfortable. I think the hardest is when it's someone I don't know, or I'm at work. I can't afford to get into the whole story at work. So, most of the time, I lie and say "I'm fine, how are you?"

When someone I know asks me, I try to be honest with myself and answer them honestly. It's also hard though because I don't like to just unload my emotional baggage on someone. It's hard to know how much they want to know. It still depends on when you ask the dreaded question too.. some days I truly am doing "ok". Some days it's just this is life and we are doing everything we can to make Greyson's life the best possible life. But other days, it's just... how is this his life? How is this our parenthood journey? Filled with love but also sadness and heartache, medications, sleep, and feeding tubes. It's not fair. I won't lie though, no matter the day, I am broken. This diagnosis has broken me. I will never be the same. I hate to admit that I was one of those people who said "that would never happen to me". I would be looking at someone else going through this maybe, but this would never happen to me. But it did. It is happening. This is my son. This is my son's diagnosis. He has this diagnosis because somewhere in my genetic family history, tay-sachs laid dormant for generations. Then I met the love of my life and somewhere in his genetic family history, tay-sachs was hiding too.

I'm also not one to share every detail. I keep things close to my chest. I hate crying in front of people. I hate feeling vulnerable. I hate feeling like people are staring at you in pity. I hate asking for help. But, more than all those things I hate.. I love my son. He is the best thing I have ever done in this life. He is the love of my life and I would do anything for him. Which is why I started this blog. I decided to get over myself and my fears of being vulnerable and share Greyson with whoever wanted to be a part of our journey. I want to take this experience and change the world. I want to help other families. I want to keep Greyson's legacy alive forever. I want this awful thing that happened to him and our family to mean something and to change things.

I had my annual physical today. I had to meet with a new doctor because mine is out until November. Her nurse met with me first and the first thing I noticed was her sweet little baby bump tugging her shirt tight. She was so incredibly sweet. We went over my medical history and she asked "has anything changed since we saw you last year?" ".. yeah, um, I found out I am a carrier of tay-sachs, I don't know if you need to know that." You can tell they have heard of it but they don't know what tay-sachs is. She notated it and we moved on. She later asked me about my medication I'm on. I'm currently taking lexapro to help with my anxiety and depression. She asked the standard depression questions. "Over the past two weeks, how many days have you had little to no energy, motivation, or struggled to complete daily tasks?" Every year prior, it's always been zero. I've been fine. But this year it was "several", still on the low end of their scale, but admitting to someone that I'm not ok is still difficult. She asked the rest of the questions and then moved on. She asked how I was after my surgery that I had after giving birth to Greyson. I had a piece of placenta that stayed behind and had to have it removed the month after giving birth. She asked how old Greyson was now and how he was doing. That's when I started feeling the tears well-up. We started talking about his diagnosis and what tay-sachs really means. She said she had heard of it but wasn't sure what it was all about it. The first thing I always do, is I tell someone "I'm sorry, I'm going to cry." Why do I do that? Why do I we apologize for having feelings? My doctor came in- and she was pregnant too. We did the standard questions and she said how sorry she was that I was going through this. She admitted that she wasn't familiar with it either and I gave another cliff note version.

We had a wonderful time in our little mini-vacation last week in Michigan. It was so nice to have a little escape from our normal routine. We were able to be tourists in our hometown. It was really nice to have a break. We got back yesterday and I spent the morning getting things put away, laundry, and trying to organize Greyson's medical binder. I work tomorrow and we have quite a few appointments for him the remainder of the week. We have a follow up with his pediatrician to check his ear infection. It looks better and doesn't seem to be bothering him as much. We have pool PT with our physical therapist. We are also meeting with his GI doctor and nutritionist, and we are meeting with his g-tube surgeon to learn how to change his button- which is the part that sits on top of his belly and goes into his stomach. They teach families how to do it so that we can change it at home. It needs to be changed every 3 months, so this will allows us to avoid another doctor visit and take care of it at home. I feel like we will get it, we've learned everything else so far and it becomes second nature. The one thing I'm worried about is seeing the hole in my baby's stomach. I'm hoping I'm overthinking it (it wouldn't be the first time), and it won't be as bad as I think it will. It's another thing we will get used to and take care of.

We had a baby shower in Marquette for our friends Ryan and Deanna and we had to feed Grey before we hit the road. It was so cute where Adam ended up sitting with him :) And the second picture was when we pulled into the garage. Grey was just OUT in his car seat.

We still don't have an exact date for our TV6 interview but I am speaking with Erin for her podcast this Sunday. I'm assuming the tv6 interview will be sometime next week. She is going to interview Becky from our NTSAD group tomorrow. I will make sure to update the time it will air and share the link when I can.

xoxo,

Kim