It's been several weeks since writing anything here. Pretty sure that as the buzz of facebook withdrawals has faded, so too has the desire to write. Instead, we've been busy just plain living~ with a great deal of adventure along the way. In a nutshell, the last several weeks have revolved around "having heart", "taking heart" and "getting to the heart" of the matter. Get the theme? :-)
Watching one of your kids struggle (with anything) is painful. Fighting people to see what you see is almost "out of body." Advocating for your kid requires a parent to dig deep inside (getting to the heart) and know that instinct trumps experience tenfold when it's your child. You don't have to experience your kid breaking a leg in order to know instinctively that climbing a tree can be very dangerous for them. Watching a child struggle academically doesn't require you to wait for them to fail in order to instinctively push for "more." You see them struggling, you feel the risks involved and you move to protect them. More help, more support, more love, more compassion, more accommodation...... Unfortunately, the US educational system is set up to intervene only when the kid has broken not just one leg, but 2. Two academic years behind. That's what it takes in order to get your kid qualified for special education. That is, unless you are a parent who refuses to watch your kid break anything in the first place. Struggles are there (the dangerous tree is looming). Intuitively, lets just protect them! Keep the kid from falling in the first place. Falling behind, falling out of line, falling into poor choices....falling away from the passion they have, the love of learning, the enthusiasm for new opportunities....
So, we have had to "have heart," "take heart," and "get to the heart of the matter" with the school recently and it's been uncomfortable, painful and sometimes it has even felt hopeless. But.... not impossible. So we stay. We bring our kiddos to the door of the school, let them cross the threshold and once they do so, we hold our breath and trust that the steps they take in the classroom, on the playground, around the halls--- with friends, teachers, support people, the principal..... all those valuable steps will lead our kiddos back home to us each night and once this crazy 13 year marathon is over, the kids will emerge on the other side of this system prepared to do with their life everything they ever hoped for..... everything we as parents ever dreamed of.
On the other side of the coin, we were recently reminded again how perfectly imperfect life is. More specifically, how amazing our body is. Bryan has gone 36 years without a pericardium (the outermost layer of the heart) without it ever being detected. Not surprising though since this condition is really quite rare. In these 36 years without his pericardium to anchor his heart to the rest of chest, his heart has migrated. Instead of being just above his diaphragm, just to the left of his sternal notch, Bryan's heart intrudes on his left lung and lists on it's side, pointing it's apex towards his armpit. Mayo Clinic offered help to get to the "heart of the matter" and now we understand why Bryan's recent EKG and echocardiograms were troubling....Why the doctor heard a murmur and even why he's had some of the pain he's had. Strange, strange, strange turn of events. Nevertheless, the doctors at Mayo assure us this is not life-altering. What poses the biggest risk to Bryan now and in the future is the size of the vessels coming off the top of his heart. They are dilated. No one seems to have a good answer as to why but ultimately, if they get too big they could tear and rupture--- and the outcome of either of those situations is very scary. Alas! We have medicine and places like the Mayo Clinic to keep an eye on all of this! What a great miracle.
Either way, we've had plenty of worry "near to our hearts" this past several weeks. We are thankful ("from the bottom of our hearts") for systems that work, people who care, places who take care of us. We are thankful for each other, our families, friends. With all of this medical drama as well as all that has gone on at school for the kids, we have had a "change of heart" about our priorities. Health is for keeping. Illness is for treating. Life is for filling in the blanks between it all. There's going to be plenty of "dangerous trees" in our lives and in our kiddos lives. If we all looked deep enough, each of us has some form of a missing "piece" like Bryan's missing pericardium. We can choose to focus on what we don't have (medically, physically, emotionally, socially, financially, etc) or embrace all that we do have. Bryan's heart might not have it's "jacket" but it is strong, probably more resilient because of it. The school may not always offer the kiddos all that they need to get a perfect report card but the kids have spirits and souls and dreams and skills far beyond anything that can be measured.
~with all my heart~
Leslie
