Tomorrow we fly back to Minnesota, I finally learned recently not to bother unpacking the suitcases completely. We are hoping to be home Saturday, but learned after our last trip to arrive with enough supplies to keep us going out there for a bit longer. With any luck, Dr. Hess will think the chest tube can come out – which would equate to full healing. It is possible that he will replace it, which will either keep us there longer or bring us back in a few weeks – which is totally worth it to get Isaac healthy.
Of course we will see lots of friends while we are there. We never leave the state without visiting Isaac’s soulmate – Ireland. She was born with the same birth defect as Isaac, we were fortunate enough to meet just before Isaac’s first birthday, Ireland is an older woman and had already been down this road a few times Isaac and Ireland spent time sharing a room in the ICU while each stretched an esophagus. Of course, during this time they were both completely paralyzed and sedated – giving us moms times to completely plan their future courtship and marriage. It is remarkable how our families just clicked – not only were our children destined to marry, but it was like we had all known each other forever – this may be because we were living very similar lives.
It is very hard to describe the relationship developed with our “hospital” family. We easily refer to them as family, because we have that type of relationship – they are our family. We have witnessed each other’s worst days, and celebrated the best. Greg and I lived alone in Minneapolis for 8 months, we had visits from family, but we were facing all of this alone. During this time we developed connections with AMAZING people that we never would have known otherwise. We will forever be grateful to Isaac for giving us this gift – the gift to look oustide of someone’s appearance, and to get to know them in an environment that leaves little room to hide anything. We know loss on a level that we never wanted to – we watched many families lose precious children – we learned how this can be done with dignity and grace, and how to carry on. There are children we will honor and make sure Isaac always knows – his first roomate ever, Jesus…… his trach buddies Nora and Amayah…… His nighly visitor Riley – who used to walk the ICU with his mom and dad and wave at Isaac as they passed. We also walked away from the loss of each of these children (and, unfortunately many more that we got to know while living at the Ronald McDonald House) knowing what strength and true love are. It is an amazing thing to watch a parent fight for their child’s life, an even more amazing thing to watch a parent show their child how to leave this life – and give them permission to do it.
When Isaac finishes up in the OR on Thursday we will go visit an amazing little girl and her family – Vivica. We met Vivica and her mom through other hospital friends and again found that connection we have found with so many others. Vivica is 12, she has fought and led an amazing life – with the love and support of her mom and older sisters. Last Saturday night this awesome little girl received a new heart – her second gift of life (she had a kidney transplant several years ago). A new heart!! I cannot imagine how hard it was for her mom to send her in to that OR that night – the fear and excitement probably combined into overall anxiety at some point. We were all up all night waiting for updates – and today Vivica is doing well. It hasn’t been an easy few days, but today is a good day.
And this journey, for so much of us, is really a day to day journey. We live for the good days, and we survive the bad. I know that no matter what we would do this – survive. Because of Isaac we have made friends that make it so much more than survival. While we dread going to the hospital because all of the knowns and unknowns, we also look forward to it – because we get to see our family. On Thursday I will go to visit Vivica and her mom, Donette - and I will give Donette the biggest hug I can, and we will cry together (tears of joy, and fear, and anxiety) and we will continue to live these intertwined journeys for the rest of our lives……..