Life After Loss

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...