I feel like I haven’t written anything down in months, but I’m so full of things to tell! Some good, some bad, but its life and its definitely therapeutic to sit on my couch, listen to The Real Housewives of Beverly Hills, and watch Alyssa’s camera, basically an extension of me staring at her all night.
Alyssa has been doing great, she always is. You can throw anything in her way and she overcomes, per usual. We have an upcoming appointment in Jacksonville which we are thoroughly looking forward to, because we absolutely adore their audiology team. She is doing SO well in school! Mom and dad couldn’t be more proud. She has been truly mastering her new wheelchair, but we are warming up to small declines, I’m literally terrified she’ll go flying, and as much as I know Alyssa would be cracking up, I would literally need crack to survive it, AKA Starbucks. She has been spending time with Gigi, Pawgraw, KK and Geeya, her grandparents and great grandparents from Tennessee and New York, so she is soaking up the love.
As for me, my New Year’s resolution is to be more positive, and try to understand I can’t control every situation. Talk . About. Difficult. I have the classic misconception that if I could handle the situation it would be done right and I wouldn’t have to depend on others, but unfortunately for me, Alyssa’s everything is dependent upon others, including my work schedule. I’m still actively learning. Slowly. Very slowly. Ask Mark. So to sum that up, basically a huge LOL.
And my not so favorite update.
As you all may know, I hate asking “Why?” I honestly don’t think it’s appropriate in our situation, and it sets you up for failure. I’m not sure why in traumatic situations people ask that. Its not my business why. I don’t believe her life was a mistake, and I don’t believe a persons physical abilities is what the Bible was defining when it says we are created in His image. Alyssa’s life is so pure and its very rewarding. A struggle at times? Yes, but it is what it is and you find the positives. Quickly. If you don’t look for positives you don’t grow, and she has to learn to laugh it off and grow.
But now I know why. And I hate that. Mark and I (and by Mark and I, I actually mean I had an idea that I acted upon and I was going to eventually catch Mark up to speed) were thinking about having one more child. I want someone to be here for Alyssa when we are gone, and not just as a “caregiver” but a family member, a sibling. Someone who truly loves Alyssa, understands Alyssa, and will help Alyssa fight if she ever needed it. I have sisters and one brother, and knowing they’re in my corner means everything to me. I wanted to give that to Alyssa. So I went to the doctor and started requesting bloodwork to check my levels since they say Spina Bifida could be due to low folate levels, but all my bloodwork was perfect. Literally. So naturally I was referred to a specialist and then that’s when I was told I couldn’t have any more children. I have a gene mutation, and not the good kind, because apparently that’s a thing. And by good I mean the kind that you work around. Yes, I know adoption is an option, but I had to take some time to process the information, and accept it. So here I am, accepting it. And simultaneously stuffing my face with the best gluten free oatmeal raisin cookies I have ever eaten, shout out to Gigi.
Am I actively looking for a surrogate who will use their own private insurance, pay their own hospital bills, and then hand the child off to me once its born? Yes I am so if that sounds appealing to you, you know where to find me.
And on that note, although he doesn’t see these things, Mark has proven to be my biggest supporter time and time again. My best friend. My favorite person. My comfort. He works so hard and sacrifices so much to make sure his girls are taken care of. He listens to me when I struggle through these little bumps in life and I couldn’t imagine experiencing it with anyone else. Here’s to our family of 3. Here’s to the future God has planned for us. And here’s to us raising a strong willed daughter that we’ll never have to worry about.