Where My Tears Became My Fight.

To any caregiver with children with disabilities, and the ones that are invisible to others, until it isn’t, you know all too well the challenge of doing average things like going to the museum. 

You know how long it took to get ready, the mental load you carry, and the weight of always questioning whether you're doing the right thing. Because even when doing the right thing, something will go wrong - even if it isn’t your fault.  Now, let’s add Food Allergies to the list of challenges we are already enduring. Before I left my house, I had to pack four epinephrine auto injectors (nope, not rich, just making sure my children will survive the day), and Elijah’s inhaler and portable nebulizer. Both my boys had (Sebastin still has) Food Allergies and Eczema, Sebastin is on the Spectrum and Elijah struggled with asthma. 

My motherhood was built around protection. I didn’t want to live in fear, and I didn’t want to teach my boys to live in fear, so we went to the park and to museums. However, this picture doesn’t capture the calculated risk after checking all labels and wiping down door knobs and handles, because, after all, you can’t keep two boys cooped up in their personal transport. You don’t see the quiet tears I shed when I saw someone just let their kids play without having to worry if it would land them in the hospital. 

We couldn’t just go out to eat; I had to think about dining in a way I never had to. I couldn’t just order whatever I wanted on the menu anymore. It mattered to call ahead now and ask, “Does your (insert dish) have milk, peanuts, or eggs in it?” Grocery shopping wasn't the same either, because Apple Orange Juice wasn't just Apple Orange Juice; after a reaction, we found that berries were added as an ingredient. Elijah was anaphylactic to all berries, including grapes. Spontaneity- yeah, toss that right out the window.  Attending family gatherings was a matter of Russian Roulette at times, because trusting anyone with my children was a matter of life and death. Now, if you think I am being dramatic, ask me why, for the last decade of my life, I have been grieving. I will tell you because I had to memorialize my son, who passed away from someone in his well-vetted Child Care Center, neglectfully giving Elijah a Food Allergen (they knew he couldn't have) that caused his demise. 

The pain is still present, and grief, and I visit the museums and go to the park with Sebastin at times now. Grief was present when Elijah’s Law was passed, and it was there when Sebastin entered middle school. 

The Elijah-Alavi Foundation exists because of grief. It is thriving because the same protection I had for my children, I now fight to ensure all children have, because no child in Child Care Centers, Day Care, or any of their learning environments should have to die from Food Allergies. This is why education and training are vital. We are also teaching those in the care of the future to be prepared, not scared, to accept that although change is challenging, it is that very challenge that is needed for change. 

And to the parent(s)/guardians who feel alone in their emotions and the mental weight, I say the quiet part out loud: it isn’t over. What isn't over, you may ask? The concern and the worry as they (our child/children) grow. Some of us are not waiting for our children to “outgrow” their allergies; we are waiting for people to “outgrow” that mindset and help create a safe space for our growing heartbeats to engage with the world around them. Sebastin will be 14 years old, and my concern has shifted, because I have to trust other people with his life again. This is why education and training are important; we can’t afford to get comfortable. 

Your vigilance can save a life.

Your support can save a life.

Your voice matters, when ours - even mine get weary and faint. 

For Elijah.

For Sebastin.

For every child who deserves to return home safe.

I tearfully thank you, the individuals who do not have food allergies, and you who continue to support the work we are doing, ensuring all children are provided a safe space to grow and learn. Thank you for choosing to be a part of this community, and your advocacy isn't going unnoticed. 

To the families in the community, thank you for lending your voices, time, and resources to support the work we continue to do. To the officials, members of government, and those in other institutions: thank you for recognizing the value of what we are fighting for and for standing alongside us, giving of your time and resources. I also thank God for entrusting me with the vision of this Foundation through blurry eyes and a broken heart; none of this would be possible without your support. 

Tearfully, I thank you all; it proves Elijah’s passing was not in vain. 

Dina Hawthorne

Co-founder/President 

Elijah-Alavi Foundation