We are expecting the results to Cara’s latest test results any day now. After months of anticipation and anxiety I feel tired. Dan is exhausted. It always seems like trouble likes troubles.
Every day I do 3-5 at home therapy sessions with Cara, 5 scheduled feedings that take 45 minutes to an hour, and making sure she gets enough rest and sleep. She has an average of 3 appointments a week between physical therapy, speech therapy, early intervention and regular check-ups between 7 physicians. Dan has been waking up for a 7am meeting, coming home after 7pm then working at home until after mid-night every day. Then there is cleaning, cooking, Natalie’s transportation to and from school and activities, everyday parenting and a teething 18 month old. This is just our regularly scheduled program. To add to this, we have had a frustrating situation at Natalie’s school, a couple of issues with two pharmacies, applying pressure to get these highly anticipated test results, and on and on. Our priority is always Natalie and Cara. Making sure that regardless of how exhausted we are, their needs are met including our attention.
The topper of my week is receiving an indirect suggestion that Dan and I could be overreacting or hypersensitive to a situation. Well, let me tell you how we react to a situation: We have sat across from a doctor that told us our 4 month old daughter has significant brain damage. We calmly asked, without a tear, our questions and tried to wrap our heads around our new lives. I kept the phone to my ear as a doctor explained to me that they suspect a progressive disease that currently has no cure or treatment, I collected my thoughts and asked questions. We stood and watched liquid enter our daughter’s airway without a cough or even a pause in her drinking. We then immediately took the necessary steps to schedule the surgery for Cara to get her g-tube. We have sat and watched our daughter have seizures, every time keeping an eye on her breathing and taking notes. We have endured a year of testing with no answer. This entire time Dan and I have kept it together, made decisions after days of thought, and have stayed calm and collected. We are not parents that overreact. Even the slightest hint makes me laugh. You have no clue what you are suggesting and who you are talking to. Making something bigger out of nothing? Really? Beyond frustrating.
Monday will be 14 weeks that we have been waiting on these latest test results. It is hard not to overthink and obsess. Hard to not let our minds run to conspiracy theories and possible outcomes. Hard to just sit and wait. The rest of the world gets to move on with the rest of their lives and we are left running in circles.
Natalie has been our little rock. She is all that comes with being 3 including tantrums, testing boundaries, and finding her voice. Natalie is sensitive to her surroundings but isn’t afraid to try something new and step away from her comfort zone. She gives without expecting. Dan was upset about something, he thought he wasn’t showing his mood but when he picked Natalie up, she hugged him, kissed him and asked in a sweet voice “Are you happy daddy?” He looked at her and said “Yes, I am happy Natalie because I have you.” That sums up Natalie. She cares.
Life is unfair, cruel and without reason. Life is also beautiful, warm and hopeful. The beauty, warmth and hope is what we get from Natalie and Cara. I could not do this journey without Dan and without my girls.