I apologize for the limited updates, 2019 has hit hard. The year began with December’s admission results, it turns out McKenzie has pancreatic insufficiency which has caused a need for multiple other tests. After learning this, we got with Palliative care and sat down for a family meeting with McKenzie’s top involved doctors. We talked,… Continue reading A tired mom fights the hardest.
It seems like we welcomed the New Year of 2018 just yesterday, where has this year gone? We officially celebrated every 1st holiday with McKenzie, we have cried over hospital beds, we celebrated McKenzie's first birthday, we have struggled to learn how to help McKenzie's sensory, we celebrated McKenzie sitting up on her own, we… Continue reading Goodbye 2018, Hello 2019!
" Down Syndrome.... What the heck is that? " When I was 16 weeks pregnant, the doctor called to tell me my blood results showed 1 and 7 chances of my baby being born with Down Syndrome - the phone call was short, but it quickly brought me to my knees. I spent weeks searching… Continue reading Awareness
In just 14 months, our daughter has accumulated 12 specialty doctors, 3 therapy interventionist, 24 active medical conditions, 3 surgeries (one being open heart), 8 hospital admissions, 34 illnesses, and both cognitive and developmental delays. My day is consumed with medical appointments and/or therapies, my nights are consumed with research and failed attempts at maintaining… Continue reading A Medical Mystery.
I don't work, but I never get a day off. The morning comes quick, before I know it I'm struggling out of bed to greet a bright-eye'd almost 14 month old. The day begins with kisses, morning prep, feeding bags, medication and of course, paw patrol. - This seems pretty decent, right? well, that's because… Continue reading The rambles of a SAHM.
“The parent knows best and the parent knows first” - David Grossman It starts with the smallest symptom and within seconds, you’re consumed with adrenaline and beginning your mental-check list. I have become all too familiar with the fight or flight response, I am a special needs mom; this is my life. When I started… Continue reading No one knows the days that almost crushed you or the fear that almost froze you.
Having a child with special needs, medical needs and ongoing illnesses has caused me to innocently forgot the big-little things, such as holidays and birthdays. I remember when I was pregnant, I loved looking at halloween costumes - imagining our babies first halloween dressed as a cute animal or tiny pumpkin, but McKenzie was recovering… Continue reading It didn’t go as planned but, I couldn’t have planned it better.
♥ Happy Birthday ♥ Dear McKenzie, It feels like it was just yesterday your little heart stopped and we were rushed for an emergency c-section. You were born within minutes and I will never forget the first time I held you, you were so tiny with beautiful, curious eyes. I hope I've done ok so far,… Continue reading Dear Daughter, on your First Birthday.
I recently switched my blog to WordPress - while doing so, I briefly reviewed previous posts from the beginning of Our Journey. I have to admit, I never imagined we would be where we are today but I am so thankful we are. Identifying as an individual seemed so hard! Enduring the teen years, understanding… Continue reading Identifying as a… Mom.
Of all the challenges we've experienced after becoming new mom's, one that has been the most complicated is dealing with extended family. Of course, our families mean the best, but that doesn't always mean its what's best. So, we set boundaries - we knew it would be difficult to convey, but we also knew that it… Continue reading Boundaries –