Where does the time go?

It's been a hot minute since I've been able to even sit down to start a new post. A lot has happened since the last post.

For me - I have decided to go to a part-time position at work. I'm unable to keep my current title but I am going from 40 hours a week to 20 hours. I know that it's the best option for me right now. I'm having a hard time not being home with Greyson and Adam. I want to be home to make memories and spend this time with Grey. It's going to be a struggle financially but it's the right decision for my family and for myself. I am truly learning that you need to take care of yourself before you can take care of others. I've been feeling really worn down lately and it's coming out in sadness and anger. It's hard for me to be a good employee, a good mom, a good wife, good friend, AND be good to myself. My day is filled with work and I come home and I only have an hour or so with Grey before he goes to bed. In that hour is bath, reading, snuggles, then bedtime. It's so fast. After he goes to bed it's try and eat dinner with Adam and pick up the house and try to find some time for myself before going to bed. Wake up and repeat. Adam is still in school right now so I try to take on a little more to help him so he can focus on finishing this semester. He is home focused on Grey all day and needs time to finish homework and study after. His time to relax is really only during nap times (after everything else is done!) so part-time will really help balance everything for us.

Adam is kicking butt in his classes. He's currently taking microbiology and diversity studies. He has shared that he's having a harder time focusing since we got the diagnosis but his grades would never reflect that. I'm so proud of how well he's doing and how he's been able to continue while dealing with everything. He's determined to finish this semester strong and it's been a challenge since we got the diagnosis.

Greyson finally met with the neurologist. We had an appointment set for June but we have noticed what we think are seizures in the past few weeks. We reached out to our pediatrician and she reached out to the neurologist and they moved our appointment up. We are going to be taking home an EEG for 48 hours so they can monitor his brain activity and have a camera set up in his crib to watch him. He's been having these moments at night where he reaches to the right and gasps awake. The neurologist thinks it may be a tonic seizure and we want to try and help him with the proper medication. They don't last long but it's still scary knowing we've entered this phase. It honestly breaks my heart to see his eyes flutter and his little arm stiffen and shake. I just wish I could fix this for him. It's so hard as his mother- not being able to protect him from tay-sachs. It's just hard knowing we will never see him take his first steps or hear him tell us the nonsense stories kids always do. I'm trying really hard to stay focused on today and focused on the present. My mind wonders to the future - knowing what is coming - and that's when I get upset.

I had a virtual appointment with my doctor today. I debated sharing this - but I suppose the whole point of this blog is to share what we are going through. I'm struggling with my anxiety and depression. I don't think I've gone more than a day without crying since we got the diagnosis. It's not always a big cry, sometimes it's just a few tears but I've never had anxiety like this before. I have this constant fear of something bad happening. I'm worried about everything and it's exhausting. My doctor started me on an antianxiety/antidepressant and I'm hoping it will help. I hate asking for help. I hate admitting I need help. But right now, I need a little help. We also talked about family planning. The dreaded topic for me right now. Will we have another child?

We've always wanted two kids. That was before we found out Adam and I are carriers of tay-sachs. We attended a session on family planning during the NTSAD conference and listened to the options available to us. 1.) have a child naturally and have the fetus tested (2.) have an egg or sperm donor that is not a carrier of tay-sachs (3.)IVF - where they will test the embryos for tay-sachs and other diseases before they implant and (4.) adoption. Adam and I decided number 1 is not an option for us at all. I can't risk it and risk losing another baby. Number 3 and 4 are both not really options for us either. So that leaves IVF. My doctor shared today we can start running labs and she will send a referral over to the Reproductive Endocrinologist to get in to just meet and talk about things. I honestly don't know if I can have another child. I'm terrified to get pregnant and not be able to give Greyson the attention he deserves. I am getting older and I don't want to be "too old" to have a child and add more risk to our situation. It's just a lot to handle and a lot on our plates. I figured it would be better to just meet with them and see what they have to say and then go from there.

One thing I am excited for is Saturday. We are heading home to Michigan to get our family photos done. I didn't get my maternity photos because mister man decided to come 7 weeks early. Then life with a newborn goes so fast, we missed newborn photos! Then COVID hit and the world shut down. So we decided now is the time and we are going to get them done now. Our wedding photographer is doing them for us and I can't wait. We have Grey's tiny superhero cape ready to go and he has a dashing outfit to wear!

Well, it's already 11pm and I need to get some sleep for tomorrow. Again, how is it 11pm already? I just got off work! Where does the dang time go?

xoxo,

Kim

This picture of Greyson was when he was 6weeks old <3 Heading to Mommy's 6 week check up!