Hi.

This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers. 

One Year Later...

One year later and my whole world has changed. The biggest change (or should I say changes) have been my rambunctious, incredible, perfect little babies. Our son and daughter were born on September 15th, 2014. I carried them 38 long weeks and they came out weighing a whopping 7 lbs. 12 oz. and 5 lbs. 5 oz.! That's a lot of baby!  They will be 9 months in a few days and they are my greatest accomplishment yet. It's amazing seeing them become their own little people. We have never been so tired or challenged or happy. They are everything.

My mom's battle with Huntington's Disease has seen very low lows in the last year, but I finally feel like we are in the best place possible. Throughout the end of my pregnancy, my mom was in and out of psych wards. She was unable to live on her own and, without medication, her emotions were uncontrollable. She would be unreachable for days on end. She forgot how to use her computer. She would forget how to charge her cell phone. I would receive calls from her landlord about her bizarre and disruptive behavior. I can't imagine that the stress of dealing with it all was good for a high risk pregnancy. If I didn't have S to calm me down, I don't know how I would have made it through.

The climax of it all was when my babies were born. Through it all, my mom still responded to the fact that she was going to be a grandmother. To her, it was the light that broke through her fog. When my babies were born, I left voicemails and sent emails. I was over the moon and couldn't wait to share pictures and their birth story with her. I knew she'd be so thrilled.

I heard nothing back.

We spent 5 days in the hospital after my C section. I've never felt such a high or rush of adrenaline, but the physical recovery was painful. It hurt more that I still hadn't gotten a response from my own mother. I knew that something was very wrong, but I tried to push it to the back of my mind. I tried to live in the now because I knew I would never get those precious moments back when my babies were so small and new. Still, every visitor who came to meet the babies made me so happy yet so alone at the same time. It's a strange feeling that I can't quite describe. I'm so thankful for the love and support that I do have, but at the end of the day, it isn't my mom.

After we came home from the hospital, my brother was the one to find out that my mom had again been taken in by the police and was again being held for evaluation. I hated this disease for ruining the happiest moments of my life. I felt cheated. I felt like my babies were cheated. They deserved 100% of our attention, but we were so begrudgingly interrupted. Luckily S and my brother took on so much in those early weeks and allowed me to focus on the enormous task of being a mother to two newborns.

In the weeks after the babies were born, we moved my mother into an assisted living facility closer to us. We were very upfront about the disease and the facility was sure that they could handle her. It only took a few more weeks for her to unravel again and it became clear that she needed more assistance. So much frustration. So many logistics. So much money that was just thrown away. Meanwhile, I was still sore from my cesarian section, getting only a few hours of sleep each night and overwhelmed by visitors and the new little people in my life.

We were finally able to place my mother in a memory care facility that specializes in people with Alzheimer's and other forms of dementia. There's even another Huntington's Disease patient there. Although she had an episode and was hospitalized her first week there, it ultimately resulted in her accepting medication. And that has made all the difference in the world. She has been there almost 6 months now and although I'm sure there will be more bumps in the road, right now she is happy and safe and that's all I can ask for.

There are dogs and cats and chickens throughout the entire facility. My mom loves that. They do yoga and cook and go on excursions to beaches and parks. She went bowling last week. I see her once a week for 15 minutes or so. Her concept of time is altered and 15 minutes may feel like 15 hours. She still recognizes me. She recognizes the babies but gets confused about their age. She has asked me if they are real or dolls. She has also asked me if they are clones. I can't get upset with her confusion because she isn't angry anymore. I'm not scared of her. The medication has made her calm and happy.

I feel like I've become numb. Sometimes I can't believe that everything in the last year happened. I don't mean to glaze over it, but some of it feels like a dream. Maybe it feels that way because we were running on so little sleep and just trying to survive. We didn't have time to process it all.

I thought I had so much more time with my mom before I lost her. At the end of the day, my mother is 57 years old and is living with HD in a memory care facility. That is my reality and I'm just trying to figure out how to accept it.

Back at It: Grown-Up Pains

Back at It: Grown-Up Pains

An Awful Day