The first thing that is required to make Vince part of a community is a great deal of bravery from my husband and me. To leave home is like heading into a desert, not knowing when we will find water again. At first there was defiance in me, and I wanted to show the world that we can indeed do everything like a family with normal kids. But by now, with many years of experience I have understood that not a whole lot can be accomplished with will alone. Before we go someplace, I always ask for God’s blessings, to help, because a great many things have happened to us already after we stepped through the door, things I was not prepared for at all. I now understand that we cannot be prepared for everything. We have to hand over the care to God, and we have to do everything possible humanly to have a blessed trip.
Why am I writing this all down? I will tell you a story:
Once I went to see the orthopedist with Vince, so he could make his sitting corset. I was edgy because I had to drive through half the city with a child with trach, and one can never be safe enough. The trach can get clogged up any time, and I have to act then and there, there is not time to waste when it’s about breathing. I have learned to suction the trach at the red light when we can’t pull over somewhere, but even after solving a thousand similar situations I still lived in stress for years until we made it from A to B.
We are sitting in the waiting room of the orthopedist, I am sweating from being jittery, from all the things I had to pack, and it being winter, I worry the warm air of the waiting room might pass some bacteria to Vince. Vince’s secretion is getting thicker; I know I have to suction so he can get some air. I press the button, but the machine doesn’t start. Now I am sweating even more, I can see the sweat shows up on Vince’s nose, which means his lungs are getting less and less air. I think about calling an ambulance, but it takes about 20 minutes for them to get here. Vince is getting warmer, his head is turning red. And I am just standing there, cursing myself for not bringing the backup suction machine. Then comes divine inspiration: I start praying. I say the Lord’s Prayer two or three times in monotone, machine-like way, I take a big breath, blow it out and trust in divine intervention. I press the button again, the machine starts, I am completely overjoyed! I quickly suction the trach and I collapse onto the chair, like a deflated balloon. I calm down, and I rethink the who trip we made to get here. This is completely nuts – I think to myself, this is not what I deserve. Then I realize that God’s grace helped me this time again, and trust starts blooming in me.
The community life of a child with trach truly starts with one having the bravery to step outside. I wrote down the above story, because it was confirmed to me that I cannot do it out of human willpower. So when we have God’s blessing on our journey, I only need to think about the equipment we might need, whatever comes along the way (you can read more about these under Devices).
By now it has become clear to me that we don’t need to participate in every children’s program. It takes a great deal of creativity to make our community life livable and enjoyable. Five years ago we received a photocopied booklet in the hospital stating what we need to know about the care of children with trach. In that, for example, is written in capital letters and an exclamation mark that we mustn’t take him into water, because it is highly dangerous (water can get into the trach and he can drown). What does a mom do in the summertime when she sees that everyone is cooling themselves at the beach? I am sure God didn’t want a life for us where we live in constant fear and isolation. So, although with shaking hands, I pack up every suctioning and maintenance equipment, and I pack the float that have a supporting bottom (so Vince won’t sink in the water), and we head to the beach. If others splash the water, I cover the trach with my hand, but basically the speaking valve helps as well to keep water out of the trach. I have to be with Vince at all times, so in case anything happens, I can pull him out of the water. I have to tell you it’s happened before that we were alone in the pool and I swam away from him and swam back. Wow, if you need adrenaline beyond the fact that you have the guts to step outside the house, you should definitely try this. It is a fantastically uplifting and freeing feeling! To trust yourself into the hands of God, and to allow Him to take care of you.
Considering community life, there is one more important thing. You have to be aware, that no matter where you go, no matter how impressive the puppet show or the children’s concert are, to the kids sitting near you, your child, the suction machine, the sight of the trach and the incidental slurping sound will be the greatest attraction. Before we had the speaking valve and I had to suction all the time, I was always in trouble. I tried to suction during applause or the performance of the band, so others sitting nearby won’t hear the murmuring of the machine, and before that the slurping sound of Vince’s trach. I was always anxious that I couldn’t suction at the right time. By now the speaking valve has solved this too, because if Vince is not sick and he tolerates it, I only have to suction two or three times a day. Of course we still carry the suctioning machine wherever we go, because we have to be prepared for everything. Since Vince has been using the speaking valve, we have been so grateful that we are not the main attraction during the show, only before, until the lights go out.