Perfection... Why not us?

Update 3-26-18

Recently Ryan and I were asked to attend our regional March of Dimes 'Walk for America' kickoff meeting as guests to give our story about Mae and our journey thus far. We jumped at the opportunity to bring awareness toward her medical issues and to help create an environment of tolerance toward others who are perceived as 'different.' Even though Mae was not born premature, the March of Dimes also supports research for birth defects, which Mae has. Ryan led the discussion about Mae and did so marvelously. (He should be/could be a public speaker!) In a mere 15 minutes, he briefly explained our prenatal diagnosis, 'healthy' delivery, limited NICU stay, extended U of M hospital admission, and touched upon Agenesis of the Corpus Callosum, Turner's Syndrome, and TPN related to malabsorption.

Although all of these medical issues are hugely important aspects of our journey thus far and all have created the makeup of Mae, Ryan spent the most time shedding light on how our attitudes have changed drastically throughout everything we have encountered so far. In the beginning, nearly one year ago (on Good Friday) we found out about Mae's congenital brain defect. And, in an immensely confusing, painfully emotional filled single second, our entire world stopped spinning as our perfect little baby suddenly seemed not so perfect. As expected, and as you have learned, we felt a range of emotions from sadness, grief, anxiousness, anger, and uncertainty (to say the least)... Yet, despite all of these feelings, we most strongly questioned, 'Why us?!' Why did this happen to us? Why are we the ones that have to deal with this? Why did we have this diagnosis given to us?

Through prayer, self reflection, family support, caring friends, and the strength of our marriage, we 'quickly' shifted our thinking to, 'Why NOT us?!' Why shouldn't this happen to us? Why shouldn't we have to deal with this? Why shouldn't we have this diagnosis? As we all know, the world is not a perfect place, and despite all of her medical issues, Mae has become a perfect gift. Our precious little miracle baby has made (and will continue to make) us, our boys, our family, and our friends, stronger and more tolerant and accepting humans. She will make others more empathetic towards 'differences' and what is perceived to be 'normal.' She will have an unknown and far reaching impact on the many people that have crossed our paths from student nurses and doctors at U of M, to preschool students at church praying for 'baby Mae,' to parents that hug their children tighter because they are thankful that they are healthy, to strangers that see Mae's line and wonder what is wrong, to the countless people reading this blog that are sharing our journey with us.

In this very imperfect world, we know that one thing can be certain, the gift that we have been given from God, who seemed so imperfect at first, is in fact the complete opposite. Mae has been a blessing beyond anything we could have imagined and in her short seven months since birth, she has opened our eyes to a world that we really did not know existed, because, until her we only thought we knew what perfect meant. But, in reality, you must understand imperfection to truly know perfection.

Medically, Mae has remained stable over the last couple of weeks. She is becoming increasingly interested and aware of her surroundings, she is enthralled with her crazy and energetic brothers, she reaches out to be held, she holds her own bottle and spoon, and feels most proud when she is standing with us. Her hair is becoming longer and poofier and (although I didn't think this was possible) her smile is becoming more infectious and bright. Although we try to capture her positive energy in photos, the pictures just cannot do her true justice. She is perfect in every way.

Ephesians 4:2 Always be humble and gentle. Be patient with each other, making allowance for each other's faults because of your love.