A Letter to Parents

Dear Friend,

First, I would like to thank you so much for visiting this website.  If your child has been recently diagnosed with severe anemia of unknown origin, bone marrow failure, DBA, or other blood disorder, I know your head is spinning.  I know what its like to both crave information and try to live in denial of it.  It is so tough what you are going through.  I want you to know that we recognize you and are here with you through it.  As a parent going through similar trials, I hope this website offers camaraderie, new ideas, and inspiration to those who have babies and children diagnosed with chronic or serious disease.

You may be wondering why I made this website.  Perhaps, first and foremost, I did it it to keep myself sane.  Part of the difficulty of being a parent of a child with a mysterious disease is the feeling of utter lack of control and inability to help.  I needed to find a way to feel empowered.  I wanted to find and and gather support for Adahlia and for myself. DBA is just too rare of a disease for local support groups, and the truth of the matter is that you have a difficult road ahead.  I encourage you to find and utilize the maximum level of support you feel comfortable with.  Whatever makes you feel better — do it.

On a larger scale, through this website, I hope to further awareness of DBA and similar genetic diagnoses, and increase awareness of the impact such diagnoses and conditions have on children and their families.  As a medical practitioner, scientist, and spiritualist, my hope is that this website helps create openings, understandings, and bridges in individuals and in the medical and spiritual communities.  I strongly believe in the power of integration at all levels in life.  It saddens and frustrates me when medical doctors are close-minded about natural and spiritual medicine — and vice versa.  I believe the best medicine is provided when people of different backgrounds and traditions work together.

Ultimately, the main purpose and intention of this website is to generate love and prayer and positive healing energy for Adahlia.  When you pray for your child, I also hope to inspire you to pray on Adahlia’s behalf in your preferred manner or tradition; to send her love, energy, joy, and light for full and robust healing.  See her as already healed.  Feel joyful and thankful for her vibrant health.  If you contact me, I will be happy to include your child in my own prayer and positive healing intention.

Raising a child in the best of conditions is a balancing act. Nurturing a young being in a conscious, compassionate way can be very challenging. And then there’s doing it when painful, risky, and invasive medical procedures are necessary – on a routine basis – to sustain your child’s life.

Your decisions are difficult. Your emotional life is like living in a pinball machine. You are exhausted.  You often feel blessed, you are sometimes terrified, and you must constantly acknowledge and shuck away streams of worries and floods of pain. It takes great strength and love to remain present with a sick child in continually difficult circumstance. It would be so much easier to be flippant or distant or blind. But I know you won’t let yourself tune out. You will keep connecting with your child, no matter what. Even when she screams in pain and fear and anger, and even when you’re exhausted, you will hold her in love.

You are doing a phenomenal job!

And of course, there is the silver lining: you are constantly reminded of how precious your child is.  For you, there will be no such thing as a smile taken for granted or a tender moment missed.

We get it. We are there with you. You aren’t alone. You are amongst some of the toughest, funniest, and determined parents on the planet. We are certain that your child and you share this struggle because you can handle it, and that you will handle it in a way that brings more beauty, light, and love to the world.

You are welcome to connect with us via our contact form.  We would be glad to share in your joys and struggles, share our experience, or help in any other way we can.  We thank you so much for your love, courage, presence, and dedication to your child.  Like a spark catching, the ripple effects of our actions towards children are fantastic and unfathomable, impacting their future and the lives of those they will meet.  Thank you so much for choosing to be an informed, conscious parent.

Blessings to all who visit this website.  May you and your loved ones know you are surrounded and guided by light and love.

Erika Marie