It has been six years. Six years of breakfast, lunch and dinner. Six years of travel. Six years of snacks and treats. Six years of thousands and millions of moments. Six years of safety and normalcy. But in a moment, all of that came crashing in upon us.
6570 every day meals.....not including snacks and treats. Only one was dangerous.
It was a crazy morning. We often have those. Hey.....we're a family of eight. What do you expect? But one little mistake lead to watching my son once again come unbearably close to death. It isn't something you wake up expecting to do. And it isn't something you wait longingly for. It is unexpected and although you never intended to be human that day, you find yourself feeling incredibly guilt-ridden and sorrowful.
People who know me, our life, our story....they know that we are careful. People who don't understand think we're a little over the top. But I have watched my son almost die 7 other times. I ignore those people who just don't get it. I just tell myself that if they had seen their child go through what I've seen, they would do just what I do. And I am sure that they would.
No one cooks for my son. No one....unless I trust them. And in order for me to trust them, they must ask me lots of questions. If they don't ask, I realize that they're not going to be careful. I send out feeler questions when I contemplate people cooking for him. If I get the right kind of answers, I move forward. I can count on one hand the people I know who have cooked for my son. He is precious to me and I can't have people who think that they know everything cook for him. They don't listen. They don't write things down. They aren't going to call me and ask if this or that is ok. You would think I would hate questions. But no... I welcome them. It shows me the level of concern that someone has. Too many questions does not exist in my life. I really don't care if I offend people because I'd rather be offensive than loose the life of my son!!
So on that beautiful Thursday, I sat in a hospital room next to my son watching him turn colors and listening as his breath turned into a shrill whistle. In fact, it took me a moment to realize that the noise I heard was coming from my son. Ski, sitting behind me, heard it too and thought it was a machine. It was a sound I have never heard before and never wish to again. And it was on that day that I heard his small, worried voice utter his hope that he would make it to his next birthday.........Sept 4. And as sense came to me, I realized that in that moment, he really felt like he was going to die. I admit, while I KNEW he was in the best place he could be, there was a part of me that worried about that as well. The medics had offered to refuse transport. I shudder to think what would have happened if we had done so. Two hours after his reaction at home, he had a second one in the ER after being dosed with benedryl and prednisone. He was given more epi, more pred, and albuterol via nebulizer. It was FAST. Incredibly fast. I have never seen have a reaction progress that fast. He had never had a biphasic reaction before.
And then, when we finally came home safe and sound the next day, there was the aftermath. It's the time when I pick up the pieces. The people around him work through the guilt. How could I have made a mistake? Why wasn't I more careful? We cope with how we feel about people incredulously asking "How did that happen?" as if we are perfect and not human. And he works through fears.
With every reaction we have had, I have tried to teach him something. This one was especially frightening to him because he doesn't remember much from the other ones he has had. We practiced with the epipen. We talked about what he should say to other people if mom isn't around. We work through the loneliness and the fear. We work through how he feels like a freak because people want to know what happened and not many ask him how he is doing. We talk about how he felt incredibly touched that our pastor came to see him. It spoke volumes to him that someone cared enough to visit him and see how he was doing, and to pray for him. I know just how he feels. In the midst of my discouragement, Ski got a text from someone who told us that they were praying for us. And they specifically mentioned the rest of our family. It is an incredibly difficult thing to watch someone have a life threatening allergic reaction. They are all different. All unpredictable. All have a degree of tramatizing results upon the rest of us. As parents, we cannot tend to the fears and worries of all of our children who we have left behind at the house. Sure, some of them are older. But it is hard to watch you little brother walk through something like that....no matter what your age. And it is harder still to not have your family's support and to not know what is going on.
For me, the spiritual aspects are clear and I am doing very well there. In fact, I can see much of God's Providential hand. I think overall, this will be beneficial experience to him in the future. I would never have chosen it this way, but there is much to learn from and remember!!! I can also see how circumstances in the past allowed us to be in just the right place when his second reaction took place. If we had not been in the hospital when that occurred, I am not so sure he would have survived. However, the emotional side.....well, it has been a hard week or so. We walk slowly through this, healing as we go. Taking each day at a time....lots of hugs and talk.
So this September 4th, we will all be celebrating like we haven't before. We are so grateful for the life of our son and our brother. So glad that this boy has had such a miraculous life so far at the tender age of 10. So amazed to see his response in the midst of suffering and how he cared most about the others around him who were also suffering. And thankful that God hears the tiny and desperate pleas in our time of need for just a little more time.
Happy Birthday Isaac!!!! You're my hero!!
And one last thing....If you have life threatening food allergies, or you're a parent or guardian to someone who does, please, please, please....
1) ALWAYS have two epipens
2) Don't ever hesitate to use them if you suspect an allergic reaction
3) Always call 911
4) NEVER refuse transport
If you're reading this and newly diagnosed, feel free to post and ask for help!! There are some awesome resources out there that can help you navigate these difficult days.
