This photo breaks my heart every time I see it. I took this picture two days before Maya needed her third open heart surgery to fix her AV Canal defect. She was born with only three chambers in her heart and only one valve instead of two, the tricuspid and mitral valve. Usually this CHD…
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“I might be laidback, but I can lean forward real quick.” Confrontation has never been my strong suit! By nature, I am a pretty passive person who gives people the benefit of the doubt. So to put on my “advocate” hat is not easy for me. But for my girl, I’d do anything… this quote/mantra…
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Every family has a story, and for many, Ronald McDonald House Charities (RMHC) is a beacon of hope during their darkest times. Love knows no bounds, especially when it comes to families facing tough times. In 2018, our family found an unexpected haven at RMHC during our daughter Maya’s open heart surgeries. For 37 days, RMHC…
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These items are things that I have loved from my experience of having four children and one who has Down syndrome. Most things for most babies are good for a baby with special needs but there are definitely some extra things to consider. I am not a proponent for more things, more clutter, more money,…
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If you google “what is Down syndrome” you will be seeing words like disorder, abnormality, disability, and other words that don’t paint a true picture of what this diagnosis means. So yes, Down syndrome is a genetic disorder caused by the presence of an extra copy of chromosome 21. It is a common chromosomal abnormality,…
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We call our kids who are fighting big battles warriors…but mama’s are warriors too! I got very used to being the caregiver with all of Maya’s surgeries and subsequent recoveries. Now don’t get me wrong, Ryan and I were a good team, but I was the one who got to be home taking care of…
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Congenital Heart Defects (CHD) effects every 1 in 100 babies born, making it the most common birth defect. Having a CHD is 60x more common than childhood cancer but gets a fraction of the funding for research. That’s why I am selling bracelets and donating all the profits to a local non-profit called Project Bubaloo.…
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Ahhh, good ol’ scanxiety. The word to describe the anxiety one feels before a scan. Maya has had so many echos in her three years of life…way more than most people have in a lifetime! I have been by her side for every single one. And every single one produces anxiety. Scans have changed the…
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After hearing that Maya had a congenital heart defect, the searching for answers began! We got paired up with a wonderful cardiologist at Children’s Hospital of Wisconsin where we got answers to our most pressing questions. Throughout my pregnancy, there were many more questions after every fetal echo and I have tried to distill them…
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This is hard to admit but I remember after Mayas’ diagnosis, crying and feeling sad that Ryan and I would never be empty nesters, and get the chance to travel together just us two once the kids were grown. I remember Ryan holding me and saying, “but just think, well get to show our baby…
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