The Impact of Diagnosis

Receiving a diagnosis can change everything for a family. It not only affects the child but also reshapes the dynamics at home. Support from loved ones became vital, as we learned to adapt to our new reality. Each day presented challenges, but we found strength in our unity and faith.

The journey through diagnosis is often long and complex, filled with emotional highs and lows. It requires patience and understanding from everyone involved, as we navigate this new path together.

Coping Strategies

Finding effective coping strategies is essential for parents. Engaging in support groups and sharing experiences with others in similar situations can provide comfort. Practicing self-care is equally important but I can honestly say that I didn’t really do it at first. I initially gained a good bit of weight. Food became a comfort at times. There was no time for exercise! I became so consumed in finding help for Madison that I just wasn’t taking care of myself.

Now I try to have some “me” time. Whether it be exercising, reading, coloring, making jewelry, listening to the Hallow app. This is way more than I was doing before. I realized that I need to take care of myself because my family needs me to be my best self. Taking a short nap even helps sometimes!

The Role of Community

Community support can be a lifeline during difficult times. Connecting with others who understand your journey fosters a sense of belonging. Sharing stories and resources can empower families, reminding us that we are not alone in this fight.

The families that I have met have been a HUGE blessing. They are part of the light in these situations. I know that I can reach out to them for support or just to vent and vise vera. Some have become especially special to both Madison and me. Eventually, I want to write about them!

My church parish has been a HUGE blessing as well. They are always there and will help any way they can. And they are constantly praying for us. They listen intently while trying to understand these complex health issues. I’m honestly surprised some of them are brave enough to ask how she is doing sometimes. But they always do! During my hardest times, they have been there for me!

Family and close friends are a big one, also. It’s so important to have their support even if they may not quite understand it all. Altogether, having all of these is an extreme blessing. Presently, I would say that I have these, but of course it wasn’t always this way. Certainly, this took time.