I am very fortunate to have all four of my children attend one of, what I consider to be, the world’s greatest learning environments, a little gem called Great River School, which is a Montessori school, for grades 1-12.  If you are unfamiliar with Montessori education, in addition to fostering a huge sense of community, personal responsibility, and overall creation of good humans, part of the programming involves participation in what are called “Key Experiences.”

These “Key Experiences” are experiential learning trips outside of the normal school environment that challenge both students and guides (the Montessori word for teachers) beyond their comfort zones, force them to do difficult things–often things that they have never done, and sometimes never imagined they would–which ultimately create an incredible level of resilience, perseverance, and a unmatchable bond built through the vulnerability of going through that challenging experience together. Now, when I say “challenging,” I do mean challenging–as in tent camping for 7 nights, long hikes, 100+-mile bike rides, harvesting crops, and, for some, especially the younger kiddos, the sheer fact of sleeping away from home for many nights.

So, one might ask, how do I feel about these “Key Experiences?” Packing my kids up with camping gear, sending them off into the elements, with minimal opportunity to know what they are actually doing every day, knowing that these challenges are likely to be even more challenging for them, based on their needs and medical diagnoses?  I love them.

And why?? Because our life together is literally one “Key Experience” after another–one challenge, beyond the comfort zone (at least out of most people’s comfort zone,) after the next difficult thing that I never imagined I would be doing.  And somehow, after each of our own “Key Experiences,” I find a greater resilience in myself, my children, and now my wife, who has been around for many of these experiences for the last nearly four years. We are able to persevere on to the next one, and are so incredibly bonded, after having gone through these challenges together.

I also now look back at some of the “Key Experiences” that I have gone through alone, without the support that I needed, and am able to see the vast difference in the outcome, especially on an emotional and psychological level, recognizing how damaged I was, and still am, from being vulnerable without any true community around me. See, these “Key Experiences” in our lives are the things that shape us or break us, and that shaping and/or breaking will be determined by the support we are able to find in those challenging times.  We live in a world that tends to pull away from situations that are uncomfortable, and I have found this time and time again, especially when it comes to dealing with the complexities and complications of having four kids with a chronic disease–people don’t want to talk about it because, and I have literally been told this, “It’s too hard for….fill in the blank…to ask questions about the kids.”  Hmmm…just imagine how it feels for me. As humans, we are creatures of community–we need that connection to our fellow being in order to thrive, something proven repeatedly in studies on human nature and child rearing.

So, rather than focus on all the people who don’t wish to join me on my “Key Experiences” that they find too challenging, I seek out those who will.  Take, for example, this most recent journey of getting Giacomo’s feeding tube placed, a surgery that is fairly routine, but with their disease, breathing complications, and potentially fatal reaction to general anesthesia, no surgery is actually routine, and I have been terrified that something tragic would happen to him. I knew that, first and foremost, my beloved wife, and bonus mom (as she is now referred to, a title coined by the nurse in the recovery room, as she is clearly miles beyond a step mom in her care, love, and connectedness to the children,) would be with me, meaning we had to find someone to be home with the other three so we could focus our efforts on Giacomo. Our good friend, and apparently newly adopted member of our family, Bee, joined Ellie, our nanny/PCA and already adopted family add-on, made for excellent fill-ins for Gigi and myself on the home front, in addition to bringing Giacomo the thing he missed most from home, “his family,” which he tearfully asked for, just after he asked for pancakes, when coming out of surgery. Ellie’s mom, Emily, also stepped up for not only coffee-breakfast delivery to the hospital, but also dinner delivery for our folks back at the homestead.

No big procedure would be complete without my “Surgery Doula,” Judith, who also doubles as my “Life Doula,” and sat by my side and not only comforted us as our guy was back in the operating room, but also provided an amazing buffer between myself and other people who brought negativity into the experience, as well as long overdue conversation that made for much-needed distraction, as Giacomo’s feeding tube placement surgery ultimately brought with it two bonus hernia repairs and a discovery of some hemangiomas  on the liver.

Since the inspiration of the “Key Experience” notion came from Great River, it only makes sense that this journey would include some of Giacomo’s favorite people from the community, a couple of the many Sarahs in his school life, and Danny, who stopped by to bring G a “hospital survival kit, put together by many of the staff there. Little did they know, they would also get a huge dose of feeding tube education on the visit, which is perfect since they will not only be part of the feeding plan for his day-to-day supplementation, but also will be with him on actual overnight “Key Experiences” for the school.

I, of course, need to give a shout out to the staff here at the University of Minnesota Children’s hospital, who have been amazing, and who you will also now see sporting “G’bot” shirts around town, as they were in LOVE with them.  This includes his fabulous surgeon, Dr. Segura, who I knew I loved from the moment I read his name tag–Segura means “safe” in Spanish, and that is precisely who I needed to have caring for my guy. In addition, I want to show my gratitude for all the people sending prayers, healing energy, thumbs-up, good vibes, welfare checks, and whatever other goodness you have been slinging over here to this rainbow-colored building on Riverside Ave–we are feeling the love and it’s working, as we hope to bust out of here soon!

The last, and most important member of the community on this G-Tube “Key Experience” is, undoubtedly, my dear son.  Those of you that have met him, know what a sweet boy he is.  What you may or may not know is that he and I have this very intuitive connection that is almost eery at times. Take, for example, the events that took place at 3:35 this morning.  After a few hours of surprisingly solid sleep, that came after a couple of sleepless hours of his oxygen saturation alarms going off, I awoke abruptly to him attempting to pull his pulse oximeter off (something he would then continue to do the rest of the night in 15-minute increments.) As I reached over him to put it back on his right middle finger, he raised his arms up, while fast asleep to give me an embrace, something he has done in the past, often with a gentle, almost caregiver-like pat on my back which is endearing as hell, I must say. This time it was different–instead of patting me in the back, he took my head, buried it in his chest, and started stroking my hair, offering me the most unadulterated, pure comfort I have ever felt.  Without any words (or recollection of doing it, I will add,) it was if he was saying to me, as my  vulnerable tears fell on his chest, the first ones I had shed all day, “Don’t worry, Mom. I am here with you. We are on this journey together.  And it wasn’t my time to go yet.” After a few minutes of him comforting me, his still-sleeping arms gently fell back to his sides, and the deep Bi-PAP–machine breathing continued while he slumbered.  I took this photo of him just moments later…clearly something is there, shining down on him, a white light of protection on him, coming from those of you in our community who have joined us on our latest “Key Experience.” So much gratitude for you all…we hope to see you on the next one! It’s likely not far off!