A New Friend

Betty, Eamon's fabulous nurse yesterday, offered to set up a "dummie" with a trach to let me see, feel, and touch our new normal. She instructed, then gave me the chance to play around with the supplies. She was unable to find the appropriate doll so brought in the next best thing...a friendly stuffed snowman. The snowman diminished the trach's shock factor, so I thought what a great way to introduce Eamon's new look to Maeve and Myles. They too looked, touched, dressed and undressed the trach, taking it all in stride. I am so proud of them and their unconditional love for the prince!

Tomorrow brings about a new chapter in Eamon's unfolding story. The trach suddenly doesn't frighten David and I, apparently M&M either, because the need has become so great. The timing is just right. Eamon's inability to properly exchange O2/CO2, his enormous difficulty handling oral secretions, and the tracheomalacia (a breakdown/weakening of his trachea) have pushed us to any "easy" decision. Eamon's infection is a mild pneumonia, one that would have most children home on an antibiotic. But for Eamon, acute respiratory distress and ultimately failure. To have been propelled to such a crisis, over a somewhat small pneumonia, confirms that his issue is chronic. We have seen Eamon suffer this past month, having reached several critical moments at home, the type that would warrant an ambulance call, tells us the time is now.

I have a special friend, Eamon's PT and the mother of Mary, who graciously and at the precise moment of need called me to say, "Mother to Mother, there is quality - tremendous quality of life with a trach." And, a peace fell over me. Eamon has made his need known. So, when I say we have an anticipation, even excitement, for the potential of the trach, it is because we want to provide Eamon with the right support to allow him to shine. And it would seem, oddly enough, that the trach is an answer to prayer!

Life with Eamon continues to stretch us, individually and as a family. But the miracle, if you will, is that we don't break. God's grace is sufficient, period. I love the image of a child holding out his hand to grab hold of his father as they walk along. That is what I'm doing. Following Him, holding tightly, and extending my free hand behind to Maeve, Myles, Eamon, and to all who amazingly choose to travel along with us.

Eamon has had a fever tonight, but the plan is still Tracheostomy at 12:30pm. Please pray that all the details, everything concerning the prince, would go well. I am feeling a bit of the weight of this procedure tonight. I took a picture of Eamon earlier, because after today his face will no longer be covered. No more nasal cannulas, masks, or taped tubes. The Prince will be seen in all his glory, now complete with a bow tie around his neck!