Future fears

It is very difficult to sleep and when I wake up my stomach is in knots. I literally picture a meat grinder going at my stomach and that's what it feels like. I am so nervous. I cannot believe in just 9 days time he will begin eating his poison.

We started stock piling the epipens calling in all our renewals hoping that since we met our deductible (thanks to 31 doctor visits in one month's time due to lyme disease) the epipens won't be close to their 700.00 price it cost us last year. It is very possible that we will be needing them soon. Of course, we always carry them with us and have spare sets, but the reality is we will be feeding him the thing that tried to kill him and if the reaction progresses we will need to react quickly. (Uch but how do I know if it's 'normal reaction' or anaphylaxis when seconds count?)

When I was pregnant with Josh we took lamaze classes. When I was in labor with him and they told me to do my breathing I yelled at everyone to shove it and that breathing doesn't work! (usual shy me was not so shy that day!) After NOT using the lamaze technique in the 12 hours of labor followed by 3 hours of pushing and then an emergency c-section, nor did I need it with both Mikey & Coby being scheduled c-sections, lamaze was useless to me! But now I am struggling to remember what was taught to me 21 years ago trying to practice those breathing exercises to calm down.

For some reason I have not been able to bring myself to read the megillah of papers the doctor gave to us. Obviously I will, but my heart starts pounding everytime I glance their way.

Coby had his blood test today, his final step before the actual ingestion. He wasn't nervous at all upon going into the lab, but when she was about to do it, he clutched my arm and hid his head on my shoulder almost crying saying, "I'M SO SCARED!" That is very unlike him. He's had shots and blood tests before, and he is usually very stoic about it. Hearing his little voice tremble for the blood test broke my heart a little bit. He must realize to some degree what is coming. I've tried explaining it and talking to him about it and he eagerly waits for it all to be over (and hopefully successful) but doesn't really want to discuss the process.

Meanwhile I am still struggling if it's the right decision for him. Simchat Torah is around the corner, and every single year chocolates with peanuts and peanut butter is given out in shul. And it is terrifying. And I tell myself if OIT works, Coby will be protected from Simchat Torahs in the future, from his first kiss, from bar mitzvahs, birthday parties, airborne reactions, touch reactions, cross contamination. HE WILL BE PROTECTED (on the whole)- so how can I not try?

But.... will his treatment end up isolating him from things he would otherwise want to do in the future? He will need to be on his maintenance dose perhaps indefinitely. While part of me says, "he can go to sleep away camp if he wants...." the other part of me realizes, "wait a second, can he not go to sleep away camps? Camps are nut free- and Coby will need his dose every single day in order to remain protected and if the nurse can't stock pile it in some corner in her office so Coby can have his dose, he actually will NOT be able to go to sleep away camp after all." How ironic is that? Is the protection I am giving him going to end up isolating him in other ways? Is he going to resent me for that?

The biggest risk takers are teenagers and young adults. Most reactions and food allergy deaths happen at those ages.... what if my teenager Coby or young adult Coby decides, 'to hell with this maintenance dose' and stops taking it, and has a false sense of security thinking he wouldn't have a reaction- and then kaboom?

Is there ever a time we can truly exhale? I feel in one way or another we will be swallowed up whole by this.

Yet, how nice will it be if we can travel without these extra fears- that he can actually fly on an airplane without worries of what people around us have been eating? That if we go to Israel for his bar mitzvah, we will not have to fear a reaction (to possibly surrounding bamba) while over the ocean?  Playdates, school buses, trips, slumber parties, restaurants, simchas. We will not have to worry about an airborne reaction while walking through the supermarket (happened), or on line for a ride at Disney (happened), or from pressing his little face against a window at the airport(happened), or from walking in a hallmark store to the strong stench of the potpourri (happened). This can save his life. This can change his life. This is what we need to do right? As a mom don't I have to do whatever I can to enrich his life and to keep him safe? Yet feeding him his poison.... Can I actually go through with it?

While research and success stories are so promising, fears of the future remain. Fears of the journey remain.