Timothy José,

I’ve thought of you so much the past few days. I always think of you. But these were THE days. The gut-wrenching, life-changing days. On Mother’s Day I thought of you because I remember sending Daddy and Jonah to see you on Mother’s Day in 2013. We had gone to church and out to lunch and then to the garden store. And we spent the entire afternoon planting our seeds and seedlings, and I was tired. I didn’t know. If I had known, I would have gone myself. I would have had us all go one last time. But I didn’t know.

And yesterday I thought of you because that was the evening two years ago that I went to see you during Marina’s rehearsal. And you were feverish and lethargic. And you snuggled up to me and fell asleep, which was unusual, only because you were typically so active. But you often had fevers for no apparent reason, so I just enjoyed the snuggles. I will always cherish those snuggles, but I will always regret not wondering about the fever. Not questioning it. Not staying. I will always wonder if it would have made a difference.

And today I thought of you because this was the day two years ago that we got the call. The call that every parent secretly dreads. The one that says something is badly wrong with our child and that we need to please come quickly. And I went. And sang “Hope’s Anthem” all the way there. And watched the day turn into a nightmare. But then they said you were out of the woods. That you would live. And I rejoiced and celebrated yet another escape. You were the master of escaping close calls.

But as the night went on, it still looked very much like woods—deep, dark woods. And I was scared. But you were stable, so I went home to see your sisters and brother and to catch a little sleep while Daddy sat with you. And Marina and Maya and I sat up late discussing how sick you were. And Marina really wanted you to be baptized, so we talked about making that happen. And I tried to go to bed, but I couldn’t really sleep. And then the call came—again.

And I drove back to the hospital at 2am and stayed up the rest of the night, making decisions with Daddy that no mother ever wants to make. But God reassured me that even though the doctors were asking us to make decisions, He was in control and could intervene in whatever ways He chose. That He could see the whole picture and knew what was best. There were no wrong or right decisions. And we had peace.

And the peace stayed all day when you didn’t wake up and got sicker and sicker. And when the chaplain baptized you with our friends by our side. And God just carried us right through that day. When doctors and nurses stopped by to see you because they just couldn’t believe this could happen so suddenly and so aggressively. And when the PICU attending called us in for a conference—to say that things didn’t look good. But we already knew. Because He also gave me courage, so I could kiss your cheek and tell you it was okay to die. That I understood. That you had overcome a lot of pain in your life, but this was just too much.

That was two years ago tomorrow. May 15, 2013.

Tomorrow will be May 15, 2015. Two years since the day I held life and death in the same moment. Two years since Daddy and Maya and Marina and I sang and prayed you into heaven. Two years since I saw Jesus Himself, closer than I had ever seen Him before.

I think of you everyday—sometimes I am acutely aware of it; sometimes it is just a faint impression of you. But I am different because of your life and death. Jesus is more real to me. I trust God completely. And I have realized that I am not, nor do I want to be, in control of situations He allows in my life. I am in some now—different from the ones you brought but challenging in their own ways—and I don’t know the answers, but I know the One who has them.  And I am just going to keep my eyes on Him.

You taught me that, Timothy José. To keep my eyes on Him. To know that He controls all situations and that He is love. Pure love. And that He is good. Always good. And that there is nothing that can separate us from His love and goodness. Nothing. Ever.

I don’t know why you had to endure so much hardship. I don’t know why you had to die. But I couldn’t begin to count the reasons you lived. They are beyond measure. World changer. Sunshine. Sonshine. Son, SHINE.

Love Forever,

Mommy

“No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” (Romans 8:37-39, NIV)

Dear Friends of Marina,

I need your help.

When Marina was 11-months old, she was diagnosed with a peanut allergy. I read books, attended a conference, watched DVD’s and basically learned all I could about her life-threatening allergy. I diligently studied food labels, shared my DVD’s and books, and educated every babysitter, teacher, friend, or family member who cared for Marina in my absence. Thankfully, she remained safe.

When she was four, Marina’s allergist, a renowned specialist at Johns Hopkins, who also happens to be peanut allergic, did a peanut challenge on her. He thought her bloodwork indicated that it was possible she could have outgrown her allergy. She failed the challenge after 1/33 of a dose, and we were told to expect her to have her allergy for life unless a cure was found. We continued to diligently protect her for the next ten years or so, and thankfully she continued to remain safe.

As Marina grew up, she took over more and more responsibility for her allergy. She read her own labels, asked questions in restaurants or at people’s houses, and learned how to administer her Epipen. I thanked God that of all my children, she was the one with the allergy because she was so conscientious about protecting herself and was never afraid to speak up and refuse a food or ask a question. And thankfully, she remained safe.

Until Monday night.

Marina attended an orchestra banquet and baked a peanut-free dessert for the potluck dessert bar. Accustomed to taking her own desserts to functions and selecting “safe” baked goods from a buffet line, she enjoyed the banquet and headed off to her rehearsal, unaware that the stomach pains she was beginning to feel were not caused by too much sugar and that the itching in the back of her throat was not seasonal allergies.

Within 2 hours, Marina was suffering a full-blown anaphylactic reaction, which left her struggling to breathe and ultimately on an ambulance headed to the emergency room. After receiving IV Benadryl, steroids, and Epinephrine and spending a night for observation, she was released and is recovering at home—a little weak, a little shaken, but very grateful.

We have both replayed the events in our minds over and over ever since—thinking of what we did wrong and what we did right and how God protected her. We are grateful for the lessons and the protection, but we also realize that to stay safe in the future—especially now with an increased risk of a more severe reaction to any future exposure—we really need help.

Even though 16-year-old Marina is extremely responsible and conscientious compared to 4-year-old Marina, none of that will matter if she has lost consciousness or if her throat is swollen shut, and she can’t tell anyone what to do to help her. Even an adult with life-threatening food allergies needs to be surrounded by people who are aware of her allergy and knowledgeable enough to help if needed.

I would be very grateful if you would take a few minutes to read this document that describes the symptoms of an allergic reaction and the steps to take to help someone suffering from one: http://www.foodallergy.org/document.doc?id=294 To put this in perspective, Marina’s reaction on Monday night included 5 out of 7 of the Severe Symptoms and all of the Mild Symptoms listed in that document. Marina carries a medication kit with her at all times, and it contains two Epipens and liquid Benadryl as well as a treatment plan. She also has Epipen trainers that she or I can use to show friends how to administer epinephrine in an emergency. It is really easy to do and could be the difference between life and death for her. If you want more detail about food allergies or anaphylaxis, there are other great resources at www.foodallergy.org .

Last year, Marina gave a speech about the importance of food allergy awareness and how awareness of symptoms and treatments can be the difference between life and death for someone with a life threatening food allergy. Monday night, she experienced the reality of that speech after 16 years of living “safely” with her allergy. In her speech, she shared stories of people who weren’t as fortunate as she was that night. Things could have turned out so differently than they did. That has made us acutely aware of the need to inform the people who attend orchestra rehearsal, youth group, debate tournaments, music lessons, and summer camp with Marina just as we did when she was young—not because she is not responsible or capable—but because despite all of the precautions she takes, she could easily end up unable to be either.

Thanks for taking the time to read this. And thanks for being aware and alert on Marina’s behalf. Hopefully you will never need to use this information, but if you do—whether for Marina or a complete stranger—you truly could save a life.

With gratitude,

Marina’s Mom