From One Caregiver to Another: What I Learned After My Child's Diagnosis

"You are not alone." These are the 4 most common words I choose to tell another caregiver.

I know how heavy it feels to receive the news of a child's rare disease diagnosis. As someone on this challenging journey as a caregiver for 15 years, I want to extend my heartfelt support and share some words of affirmation from one rare disease caregiver to another.

Expand your community

First and foremost, remember caregivers are not alone on this journey. Although the road ahead may seem daunting, there is a supportive community of parents, caregivers, and medical professionals ready to walk alongside each other in the rare disease community.

When my daughter was first diagnosed, I called my friend. I felt comfortable sharing my honest fears with her. Over time, I have found others in the rare disease community – like warriors, caregivers, and healthcare professionals – to turn to for hope.

In the early years, I contacted local support groups, online forums, and Facebook Groups to connect with others who understood what my family was going through. The rare disease community is tight-knit, ready to share our personal experiences, lend encouragement, and equipped with listening ears when rare disease families need it the most.

I felt embraced by various rare disease organizations, and I partnered with other nonprofit organizations like the Sickle Cell Community Consortium to share my knowledge and skills with the community. By partnering with them, I found a group I could relate to.

Follow the latest research and treatment updates

I quickly learned that caregivers are much stronger than they think, and they and their children are resilient. I learned to follow clinical trials on ClinicalTrials.gov to see the latest rare disease treatment options.

I serve on various rare disease advisory boards like the Cure Sickle Cell Initiative's Community Input Panel which allows me to learn and understand the medical community's search for a cure. Serving on various advisory boards helps ensure that I know the latest and most up-to-date research and treatment options available.

I became a Sick Cells Ambassador to lend my family's voice and experience to related legislation. Through Sick Cells, I am able to stay in tune with what is happening related to my daughter's rare disease on a legislative advocacy level. It can be helpful to find a similar organization within your rare disease community that allows you to connect with others in a meaningful way.

Don't be afraid to ask for help

I remember when my daughter suffered her worst pain crisis and when she received a second diagnosis of Type 1 Diabetes, and I had to seek help. I wish I had known sooner that it was okay to ask for help! It's okay to go to therapy. It's okay to contact family and friends when help is needed with the laundry, house cleaning, dinner, etc. I've had to learn how to ask for what I need.

I admit sometimes I feel like I am carrying the world's weight on my shoulders. So I told my sister, who was in another state, and she moved closer to me so I would have someone to talk to close by that I could trust. My sister is now only an hour away and shows up when I ask for her support.

Caring for a child with a rare disease can be emotionally and physically demanding. Don't be afraid to seek assistance from family, friends, or even professional caregivers when you need a moment to recharge. It's essential to learn how to build a support network. Remember, taking care of yourself is necessary to be the best possible advocate for your child.

When things get complicated, and I don't know who to lean on, there are days when I turn to other rare disease caregivers who have walked this path before me. The Sickle Cell Caregiver Summit that takes place each November is where I met most of the caregiving friends I've learned to trust.

Overall, having a support system and the strength within to acknowledge that I am not alone comforts me. There is a community of caring hearts ready to offer a helping hand.

Advocate diligently and remember your "why"

One role of caregivers is to advocate fiercely for our child's needs. I know how to gauge my child's triggers, how much water she should be drinking daily, how to speak up for her in the emergency department, and when something goes wrong, how to file a claim or submit a complaint.

As parents, we are their strongest advocates. Daily, I fight for the support and accommodations my child needs in school, sports, and other activities. To best advocate for my daughter, I must explore a 504 plan or an Individualized Education Program (IEP) to ensure she receives the appropriate support and accommodations for her academic journey. As I advocate, I am constantly reminded that my daughter is my why, and she led me into advocacy.

Celebrate each victory – big or small

Celebrate the small victories. I try to celebrate my daughter every chance I get. I try to do everything I can to make her dreams come true, within reason.

No matter how small the joys may seem, celebrate each victory, whether it's a pain-free day, a successful medical appointment, or a birthday. These moments will serve as a reminder of the resilience both caregivers and their children possess.

Celebrate your efforts, too!

Lastly, remember to tell another caregiver they are doing an incredible job. Sometimes, as a mother/father and caregiver, we have to learn how to encourage ourselves when experiencing difficulties. The love and dedication you pour into your child's life are immeasurable. Celebrate your efforts and find your joy. Believe it or not, caregivers make a profound difference in the world.

Caregivers possess an incredible measure of strength that helps us navigate the ups and downs of this unpredictable journey. We become experts on our children by studying them every day. We learn to recognize the signs of fatigue, pain, stroke, and other maladies that come our way. When caregivers acknowledge their strength and embrace the challenges before them with confidence, they become champions for their loved ones.

Hold onto hope

Lastly, these are the words on my heart that I want to tell another caregiver: stay strong, dear caregiver, and always hold onto hope. Never underestimate the power of hope and positivity. There will undoubtedly be tough days, but maintaining a positive outlook and nurturing hope can provide comfort during difficult times. Embrace each day with a grateful heart and cherish the precious moments you share with your child.

Together, we can navigate this journey and provide our children with the love and support they need to flourish.