Life After Loss

I wish I could see my baby girl flying. Or be able to call Heaven just to make sure she's ok. I remember holding Arianna in the days before she passed, knowing that the moment she passed I would do anything  to be able to hold her again. Knowing that I would miss brushing her hair. Or touching her face. At that time I already missed her smile. I missed how she'd wrap her little arms around us. Or how she would grasp on to our fingers. I miss watching her scoot her way out of her Boppy. I miss walking into her room to find what crazy position she woke up in. I miss waking up her talking. I miss the therapy and nurse appointments. I miss the long backroad rides up to Children's. I miss the people who became like family to us because we saw them so often. I miss getting mad at her feeding pump because it wasn't working quite right (just for me to discover it was a user error; Mary B. you can confirm this haha). I miss seeing how excited she would get when she wo...

"How are you doing?" That's the first question out of anyone's mouth. Not just in situations like this, but anytime two individuals see one another. The interesting thing is that the majority of the time, we're not being genuine when you ask that question. Think of how many times a day you get asked how you're doing. By the grocery store clerk, the teller at the bank, the receptionist at the doctor's office when you call to make an appointment. It would be interesting to see what would happen if everyone started being honest when asked that question. It's not that I get mad or upset when someone asks me how I am. It's just that I don't even know how to respond anymore. I'm lying if I say I'm good. I'm lying if I say I'm doing ok. But I can't even begin to explain how I am doing. It's hard to explain, but I feel as though I'm falling down the rabbit's hole in Alice in Wonderland. Or like I'm on auto pilo...

People think that grief is only for those that have lost someone, but there are all sorts of situations that can cause an individual to go through the grieving process--divorce, losing a job, breaking-up, and having a child being diagnosed with some form of disorder. You find out you are pregnant, and people ask you what you want--a boy or girl. What do most people say? I don't care, as long as the baby is healthy. The day you find out your child is not healthy-whether it's discovered during the pregnancy, at birth, or when the child is 7 years ago--you are very likely to start going through the five stages of grief. 5 Stages of Grief Stage One: Denial and Isolation All we kept saying was no. Not our baby. Everything is ok. We can explain every single one of these “markers”. There’s no way anything can be wrong with her. The pregnancy was perfect. There are no genetic syndromes in either family. You are wrong. Doctors can make mistakes too. It was easy to ...

Words will never be enough to explain the fear my husband & I faced for the first 2 weeks of our daughter's life. The day after she was born, the neonatal doctor covering at our hospital knew something wasn't right. When he first mentioned the word syndrome, the only thing that came to mind was Down's Syndrome and they already told us she didn't have that. What other syndrome was there? He explained there a so many rare syndromes out there, and that they will do a genetics test to determine what specific syndrome Arianna has.  In the NICU, they threw more than one syndrome at us. It felt as if the Residents had bets going on who was going to diagnose her correctly. It felt like a dream. We kept telling them why we didn't think she had a syndrome. I mean, she's our baby. Those things only happen in movies--this is just a dream isn't it? But there's no coincidences in medicine they say. They told me not to google. But how could I not. There are so...

Some days my heart just breaks. Over and over again. It breaks for my innocent little baby. This poor girl is teething, has granulation tissue around her G-Tube so it requires cleaning and steroids daily (which she does not find very pleasant), and now I take off her helmet to find a blister. You know what is so aggravating about that? I just took her to the clinic yesterday for her helmet. She had developed a rash on her forehead that was there for over a week. You know what the guy (I don’t know what he’s considered, a doctor? Therapist? ) said to me? If something like this happens again, don’t wait so long to bring her in. Wait. Hold up. You only work a day and a half a week at this clinic. I don’t know where he is the other days. I would have no problem bringing her to any other clinic (especially since we’re at Children’s Hospital usually once a week and there’s one right there!!) but I was not given that option. I was told bring her in at your next scheduled appointm...

Let me start off by saying thank you. Thank you to all our friends and family who have stood by our side throughout this journey so far. I don't want this to come off as we don't appreciate things because we absolutely do! With that being said, why do people feel the need to constantly point out how lucky we are? We have never once said that we're unlucky. We know we're lucky. I know I'm lucky. I have a gorgeous baby girl, an incredible husband, an awesome support group, a roof over my head, and food on the table. But, how can you, with your little perfect family, your child with no health issues, sit here and tell me I'm lucky. Do you live my life? Do you see my day to day struggle? Do you hear me arguing with doctors to make sure my daughter is getting the best care? Or calling 20 different people trying to get the supplement my daughter needs? Or how about watching nurses carry her off for surgery? You know what it's like to see your 4 month old take...

I was putting away my daughter's clothes the other day and thought-wow, had I known my daughter was going to have a PEG tube, I would've bought different clothes. What should I have done? Not purchased anything ahead of time? Purchased a lot of everything to be prepared for anything? We don't know how life is going to unfold.  100 people. That's how many people have been diagnosed with the syndrome my daughter has. There were more people in my elementary school than that. More people live in my condo association than that. And yet our princess, Arianna Marie, was diagnosed with 2q37 Deletion Syndrome when she was 2 weeks old. NICU. Syndrome. Features. Facial Paralysis. Genetics. FISH analysis. NG. Placement. Jaundice. Residuals. Billy Ruben. Physical Therapist. Occupational Therapist. Speech Therapist. Neonatal. Splints. ABR. Feeding pumps. Aspiration. Swallow Study. Apnea Monitor. 2q37 Deletion. Cochlear Implant. Sensioneural. Wilm's Tumor. PEG...