You may have heard by now, Isaac has another bronchial esophageal fistule – this means that he once again has a hole in his esophagus, that connects to his lung, that connects to his trachea. Seriously – like clockwork this is happening.
In good news, he is totally not sick. We’re not sure how or why, as this always makes him pretty sick – we may have caught it really early or he miracles are happening. Either way, he’s not letting this get him down. The doctors in Ohio, who once thought we were imagining these fistulas did get to see them, and they finally agreed that the fistual does exist.
We talked to them a few times, and decided as long as Isaac is healthy and happy we’re not rushing up there. We are already scheduled in a few weeks, we’ll see what that brings.
Remarkably, Isaac has had a great week. He has run the park, taken a few walks and particpated in Vacation Bible School. To see him dance and sing at VBS is always a spiritual experience, he LOVES it. His joy is palpable.
For now we will keep on trudging along, fingers crossed that the healthy streak continues!
Sometimes our five year old seems to “get it” better than the rest of us. Friday night, as we drove to speech therapy Isaac and I were dancing and singing in car. In the middle of our song and dance he stopped and caught my eye in the rearview mirror, he smiled and said “I’m back”. Those two little words summed it all up, he’s back.
He’s back home, where he should be. He’s back to singing and dancing the car, like he should be. He’s back at school, where he is loved. He’s back.
Sometimes we get so wrapped up in the medical piece of it that we forget about the 5 year old. We forget how much fun it is to sing and dance in the car. Or how much fun it is to go to a friend’s birthday party and get your face painted – for the very first time!
When we least expect it, Isaac gives us reality checks. If we are too caught up in the drama of Isaac he reminds us to enjoy his health. If we are enjoying his health too much he reminds us things could be worse. He is a balancing act, and he balances us.
This week I have had the honor of attending Vacation Bible School with Isaac. Of course, no other kids have a mom escorting them – I was a little bit bitter about all of the happy parents dropping their kids off on Monday, gleefully heading out the door for 3 hours on their own. Then I started watching Isaac…
I realized, because I HAVE to stay with him I am experiencing more with him than most parents do. I watch him dance unabashedly in the aisles each time the band plays a song, I have gotten to know the wonderful older boy who has made Isaac his BFF this week and seen how beautiful some kids really are, I have seen a smile a mile wide as Isaac runs a relay race. I have seen it because I was “forced” to be with him this week.
Vacation Bible School is focused on “God sightings”, where do you see God? I am not a deeply religious person, I’m really not a religious person at all. I do believe I have had my own “God” sightings this week through my brave boy. I have seen his strength and resilience as he goes to VBS each night feeling not so great. I have seen this child dancing in the aisles, and leading the other kids in this endeavor. Isaac ran a relay this week with all his heart, he didn’t come in first – but he ran as hard as a trached, cruddy lunged kid can! His spirit is shining bright, and I am witnessing it each night. I think this is the point of VBS, I hope they would be proud of this mama for listening and getting it 🙂
At home his week, Isaac has started speaking in the most complete sentences we have ever heard! He seems almost inspired.
There may be no major connection here, but there might actually be. Whatever it is – we will enjoy it. I am sad to see the end of VBS tomorrow night, this time with Isaac has been so nice!
First – the exciting news, Isaac can BLOW! With the trach Isaac obviously breathes through his neck – making the blowing of bubbles and party blowers impossible. We have been trying to train him to blow through his mouth, again utilizing that fancy airway that has been created for him. He hasn’t quite gotten it, until this weekend. He noticed all of the other kids blowing on their party favors at a party and with sheer Isaac determination set out to do it too! He came home blowing away 🙂 Just one more sign that maybe he really is ready to lose the trach.
This week has been declared Global Tracheostomy Awareness Week, Isaac is sporting his “Trachin it one day at a time” t shirt today to honor it 🙂 I think it is pretty important to recognize the trach, as it definitely saved our Isaac’s life. Before Isaac got his trach we had never met another person with one. Our impression was that it was disabling – we were so wrong. It is hard to get upset with people who are shocked to see Isaac do the things he does with a trach, because we never imagined it was possible. We now know so many trachie kiddos, and their families. They are trached for a variety of reasons, and use a variety of equipment – but they are all amazing, resilient kids.
Our trachie boy runs, climbs, goes to gym class, swims, dances, sings, and BLOWS. There are no limits to what he can do – and that is important for everyone to know. Isaac’s trach doesn’t limit him – it empowers him.
It is all he has ever known. We remember the sick baby we had before the trach – the baby who slept all of the time because being awake AND breathing was too much work. We remember the baby with tubes, so many tubes that the first time we saw his whole face was the day he got his trach. We went from fear of the unknown to utter elation – we knew instantly that this was the best decision we could make for him. Learning to care for a baby with a trach was not easy, and bringing him home was scary – but we survived. The more we relaxed the more we could see what this kid can do!
Isaac has grown by leaps and bounds these past 4 years – his progress never ceases to amaze us. He is, of course, so much more than a trachie kid – but the trach is such an important part of who he is, and why he is so well known and loved.
Our lives with Isaac have never, ever been this “normal”. We have no catastrophes in sight, no major illness, no additional tubage coming out of our boy…. we seem to have lived so much of the past 4 and a half years in crisis mode. Even our travel to Minnesota at this point is incredibly routine and planned. Sometimes I sit back and marvel at how good it feels to be normal.
In Isaac’s normal life there is still a lot of extraordinary…… this normal child breathes through a hole in his neck and eats through a hole in his stomach. He sleeps in the living room, as he has nursing overnight and quite a bit of equipment by his bed (oxygen concentrator, trach humidifier, suction machine, feeding pump) and having him in a corner of our living room is just easier for all of us.
In the middle of all of this we have a little boy who can’t stop dancing – we often catch him in front of the dishwasher watching his reflection as he dances. He sings, and sings and sings. His rendition of “Twinkle Twinkle Little Star” is beautiful 🙂 He runs frantically when the ice cream man comes through, and can’t wait to go line up and get his treat – they last a week and we usually end up throwing them out – but he goes out everytime because it is such a joy to see!
On Tuesday nights we join a few other families at a local ice cream shop for dinner and fun – oh how he loves these nights. He marches in and goes straight to his friends, and often ends up dancing 🙂 He loves his friends, and they are so wonderful with him.
Isaac continues to teach us amazing lessons, and just how lovely normal can be!