I’m going to start off by saying sorry. It’s been about 2 months since I have done an update on Adalynne and I know most of you like reading about us. There are various reasons as to why it’s been so long. We have gone to California and Florida to visit family and honestly, having two trips back to back overwhelmed me. In addition, I am exhausted, utterly exhausted mentally, physically, all over just exhausted. We are in the ending stretch of our journey and I know that. My days now consist of babyvom and breathing episodes mixed with seizures and bloodcurdling screams. I watch my warrior struggle every day with these, “episodes” as I call them that happen 10 to 15 times a day lasting 30 to 45 minutes or longer. In between these episodes, I spend my time attempting to get Adalynne to eat. She can no longer suck on a bottle anymore but luckily can still swallow so we use a spoon. I make all her baby food and attempt to pack as many calories as I can in it. She was born at 7 lbs. 1 oz. and is now, 1 day shy of 5 months weighing 10 lbs. 8ozs… Our days together are dwindling and I’m terrified but thankful. Tomorrow she will be 5 months old. 5 beautiful months we have had together. 5 months of waking up to the most beautiful baby I have ever seen. 5 months of snuggles and love. As much as I want to have 5 more months/years/ decades of seeing her beautiful face, I am ready for her suffering to end. Watching your baby go through this is torture, fucking torture. I stay as strong as I can until I have to stop and think about everything. Maybe another reason I haven’t wrote a blog in months. This blog makes me stop and focus on everything and spend time reflecting. This is probably a good thing for me to do but living this day to day life is sometimes, enough for me to handle. Being a single mom is hard but, being a single mom to a special needs/ terminal baby is a whole new level of challenging. Another thing I am thankful for is you all. Each one of you that read this; that ask for updates, that send me messages that you’re thinking of us, or sending us love, my friends that pull me out of the black hole I’m sliding into I thank you. I fucking thank you so much and I love you all. Some days feel like I literally cannot breath and bathroom trips turn into my few seconds of crying and then pulling my shit together and getting back to what needs to be done. But, enough of this depression. I finally got Adalynne to meet my family, not all of them but close. Hopefully we will get her to Indiana before her time ends but I need a break from traveling. Adalynne was able to visit Seaport Village, La Posta and Yogurt Mill during our California trip. My favorite places to go to when we visit there. In Florida, we were able to take her to Animal Kingdom in Disney. I’m sure taking your 4 month old to Disney seems a little dumb but I will never be able to take here ever again. Or see her face light up when she sees a Princess or ride the teacups. I won’t get to do those things with my little girl.. If I could ask for one thing it would be for her to be able to actually see these places. I hate having a blind baby, it breaks my heart knowing she cannot see my face light up when she comes out of her episodes and her beautiful blue eyes look up trying to find the voice she hears.
Monday December 15, 2014
I had to pause that blog and am now getting back to it, finally. Luckily, the past few days have been better for us both. I am getting back to feeling a little happier and myself and Adalynne has had a better handle on things since we fixed her medicine. She is eating a little bit better as well. She was able to "see"me dance on stage recently. It was extremely bittersweet seeing all these beautiful girls and knowing I'll never see her up there. I am grateful that we had our time together in a place that holds a special grip on my heart. I think we will make it to Christmas but I have this gut feeling the start of next year will be our passing time. We will be spending lots of time snuggled up while we can. Recently, Adalynne went and saw a neurologist who gave me no answers about her seizures. The best I can do is attempt to keep her comfortable. Which is an increase in morphine, warm baths, and lots of cuddles. So, until the next time I can get myself to write another one of these happy holidays to you all and good night everyone. Much love to you all beautiful people.
