Exploring Sri Lanka with my close friend Valerie, and visiting families who received humanitarian and educational aid from her nonprofit agency; Christmas 2010.
In 2011, I lost my close friend and colleague Valerie. Prior to her passing, we were developing a business plan to grow her nonprofit agency, the Isaiah Institute. After spending two weeks with her in Sri Lanka, a country where she and her husband focused their humanitarian and educational aid efforts, I unofficially joined their team. Just four months later, Valerie passed away. I was immediately hit with shock and denial. Then came the fear and waves of anger. Raw sadness finally took over. Even though Valerie had a huge community and we all were experiencing this sadness together, I felt isolated in my feelings. I didn't know how to deal. I felt like I was drowning.
As a Special Education teacher, I've witnessed parents, family members, and close friends experience these same emotions when they are faced with the possibility that their child might have a disability. I've observed friends and spouses struggle to get on the same page about why their child is struggling in school and how to solve it. I've sat with parents as they mourned the loss of a life they envisioned for their child. I've witnessed friends' marriages dissolve. The struggle is real for these families. Grieving isn't isolated for the dead.
Here are several thoughts we might experience when faced with the reality that our child has a disability:
DENIAL & ANGER
Statements we tell ourselves might include:
You may fear that:
GUILT & SHAME
You may feel guilt and shame:
You may feel:
When Valerie passed, I experienced all these emotions, even though the logical side of my head knew I wasn't alone. I was experiencing an extreme disconnect between my mind and my heart. Parents with a newly diagnosed child often feel the same way. I was searching for answers and came up empty most days.
So I decided to seek help from experts. By doing this, I was able to process my experience in a safe place. I also was able to reconnect my heart and mind. While I was powerless over what happened to Val, I could take action by helping others. I became involved with Valerie's nonprofit for a while after her passing. I also dove deep into friendships with people who were willing to give me the space I needed to be sad, angry, and confused, and would love me through it without judgement. Being surrounded by these people and organizations helped lift me out of my despair and brought me back to life with a new and hopeful perspective. While I still experience waves of sadness and anger today, I don't stay there. Meeting other parents who face similar challenges and identifying the right resources for your child can help.
How to Find Help
If you are a parent who is struggling with a child's diagnosis of having a disability, or if you know someone who is, please reach out to me. This summer, I will be offering a parent support group called WATER. This group will be designed to help you connect with others like you, build a network, learn how to effectively advocate for your child, and learn about resources in our area that will help you and your family.
Water is a strong symbol. Water can overpower. It can drown. But water also brings life. As a parent of a student with special needs, you have the power to be like water. While we are powerless over our child having a disability, we do have to the power to effectively advocate for our kids when we connect with one another, educate ourselves on our rights, and become aware of resources available to us.
As Margaret Atwood wrote in The Penelopiad, "Water does not resist. Water flows. When you plunge your hand into it, all you feel is a caress. Water is not a solid wall; it will not stop you. But water always goes where it wants to go, and nothing in the end can stand against it. Water is patient. Dripping water wears away a stone. Remember that, my child. Remember you are half water. If you can't go through an obstacle, go around it. Water does."
Like water, when we align ourselves with one another towards a common goal, we empower one another and ourselves. Be like water.
***Please note: the grieving process looks different for everyone, and doesn't happen in the same order. I was consumed by grief for a long time, and I was a mess for a couple years. My grief negatively impacted some of my friendships, but those experiences also helped drive me to become whole again.
***This blog has been modified to exclude details surrounding Valerie's death, in honor of her family's wishes.
Brittany has worked in public education for fifteen years, and is a certified teacher for Students with Disabilities, English Language Learners, and General Education students. She also recently earned her license in Educational Administration and Supervision. Brittany spends most days playing in the dirt and water with her two-year old, giggling with her 6-month old, and sneaking in a romantic date with her husband every chance she can. Brittany owes her revision and editing skills to Jen Woods, and further inspiration to two of her closest friends, Lindsey and Meredith.