"How Do You Do It?"

Friends often ask me, "How do you do it?" Before I can answer, they often answer their own question, "I don't know how you do it."  I honestly don't know how I do it. What even is "it"...it's a lot.

Having a child with a chronic health issue is the most challenging thing I have ever gone thru and continue to go thru. Every day. Every party. Every play date. Every meal. Every label. Every bite. Every single damn ingredient. I would be lying if I said it's easy. It's incredibly challenging to be that parent.

You see Jahan, all I want for you is normalcy. I try so hard every day to fight for that. In your school, your classroom, with your friends, your family, at the table, at the restaurant.  I yearn for this for my baby.  We DO NOT believe in wrapping you in a little bubble, requesting food bans, which would impact so many others. Accomplishing this means, you are around foods so close in proximity to you, that it could do serious harm, as we have seen.  As your parent, I am trying to keep you safe, that means I feel the burden, the stress, the what-if.  Trying to educate others, I am often viewed as overbearing, overreacting, a helicopter mom and the list goes on, mostly negative. It is a hard journey.  Co-parenting is equally challenging.  Daddy and I will continue to be diligent in maintaining your safety and also your quality or life, including relationships and experiences.  Then there will be new challenges that OIT will bring. Many in fact. For starters:

• Will we all relocate to California? The thought of separating you from Emrys breaks my heart.
• Will we stay in Maryland and travel back and forth to California every few weeks for the duration of the treatment that takes years?
• Will you be successful with this treatment plan? Will we be successful?
• How will we manage your schooling while in treatment?

The list goes on and on. I don't know what we will do or how we will do it, but we will do it and you will ride off into the sunset, free from these shackles. 

TGIF! We're in the Hospital

Some lessons tonight. You are NOT ready for wheat. We can confidently administer your meds. Epi-pen is worth every damn cent they charge. 

Here's our update on our at home wheat challenge: You failed. miserably.  Coughing occurred 15 minutes after ingesting three mini pretzels. Then a vomit. We thought that would be it. It wasn't. Coughing continued which can be indicative of an itchy throat, throat closing, swelling, etc. I got Hopkins on the phone, they said the reaction appears local, give Benadryl. We did. Coughing subsides. 30 minutes pass and I am watching you like a hawk.  You begin itching all over. Itching your throat. This is not good. Now a systemic response and it's moving around. I call 911 and tell daddy to get you on the ground flat. I grab the $600 Epi-pen and swing it into your left leg. You are not crying...yet.  A few seconds pass and I realize I had to stab you my son, I did it. Whew. You begin wailing and I know the needle went in. EMTs arrive and off we go to the hospital. On the way you had a third reaction. Giant hives head to toe. We are at the hospital and safe. You, my baby boy, are iv'd up and feeling better now. You are chatting about the fire truck and ambulance, typical for a two-year old.

It's About the FUN not the FOOD!

With our beach vacation wrapped up, I am reflecting on this experience and how I felt throughout our beach weekend.  The trip included 22 people, 12 adults and 10 kids. The kids' ages ranged from six months to eight years old.

The kids enjoying their Maryland beach vacation

Trips like this allow Mehul and I to see how other kids eat. Freely. Wow - what a luxury that most parents take for granted.  One had a hot dog at the boardwalk. Others were allowed to eat anything from anyone without question. And of course no required label reading  The kids on this trip were far less picky than our sweet boy. Their diets seem so diverse.  A part of this is because innately the other children are simply not as picky as Jahan. They would eat foods with color also known as fruit and vegetables!  Their appetites much larger. And then of course, no food allergies, not even one.

It still is a tough pill to swallow to have to tell Jahan he cannot have what his friends are eating and it will make him sick. He cannot have the french fries on the boardwalk that daddy is eating because of the oil it is fried in. He cannot have the chicken that was made for dinner because of ambiguous ingredients.  It hurts my heart that my boy will soon know that he is very different from his friends.

With all of the "nos" and"cannot have those" this past weekend, Jahan was shown some love by one of our dear friends.  She sought out a Jahan-safe recipe separate from the others that would mimic what the others were having.  Jahan loved it!  Moments like this shows us how much Jahan is loved and we cannot express how grateful we are to have such wonderful and understanding people in our lives.

With all of the emotions that come with having a child allergic to many many foods, I have to remind myself, that the life we live is about the fun we are having, not about the food we are eating.

No horseback riding, but this was the next best thing!

Jahan won this lil monkey all on his own!

The Squeaky Wheel Gets the Grease

It's the last weekend of the summer of 2016, well according to the schools anyway.  The Patel's last hurrah and we are super excited to be doing it with five other families, one which we have never met. Vacations used to be the source of a lot stress and anxiety.

• What food will we pack for Jahan? 
• Will we have a kitchen?
• Have we considered all the precautions at the airport and on the airplane?
• What will he be able to eat at the restaurants? 
• Will the restaurants be able to accommodate his multiple allergies?
• Did I research all the restaurants and call ahead to speak with the chef and manager(s)? 
• How and when do we break it to the others in our group that they are important players in the game of keeping Jahan safe and reaction free? 
• Will they have stores nearby to restock should we need more Jahan safe food? 
• How close are the nearest fire stations, hospitals, etc. should he have a reaction?

And the list could go on and on - the squeaky wheel gets all the damn grease! What I mean by this is Jahan usually gets most of my attention in planning for a trip that often I forget something for Emrys - never fails me. 

There is zero margin for error. I, we, none of us can make a mistake.  This is a lot of pressure for people to carry. We are all much more comfortable with this process now because we do it all the time.  We includes not just Mehul and I. Our friends, our family, the school teachers, all are nothing short of amazing.  I am quite vocal, maybe to the point of being annoying, but everyone we associate with knows Jahan has allergies and while he is still young, it's everyone's duty to help keep him safe.  

My mantra for Jahan is that he may have a restricted diet, but he will not have a restricted life. We will actively participate in everything - Jahan goes to a group setting school, has a better social life than most 30-somethings, has stamps in his passport and will be going on his sixth vacation this summer.  Isolation does not work for us. Here is to an amazing reaction free weekend with wonderful people and not forgetting any of Emrys's things! Let the memory making begin!