From an outside perspective, it would seem that our situation in terms of coping with a sick child is very difficult. However, the truth is that this didn’t happen overnight. Like anything else that is handed to you in life, there is a process you go through:
First, you react to the issue.
Then, you adjust your life accordingly.
Then, a new normal ensues.
Focusing on What Really Matters
Over the years, we have adjusted our life to meet our child’s needs and adapt to her condition. Our priorities used to be our work, our social life, our athletic activities, our family, and our church. Now, however, our top priority and focus is mainly Elouise—maintaining her health, keeping her active, and showing her everything we can in life given her limitations.
For me that is my mission: to keep my daughter healthy and happy.
Coping with a Sick Child during Hard Times
When times have been tough, it has usually been tied to the progression of her condition—specifically when surgery has been required.
Elouise has done very well in each case. Outside of her condition, she is very healthy overall. Other children have more chronic internal or neurological issues that, on an ongoing basis, would frankly be even more difficult to handle.
As parents of kids with H-ABC, we have come together in support of one another and have provided each other with amazing resources to help. We’re able to relate with each other, as we understand the struggles that go along with coping with a sick child. Moreover, we take every opportunity to learn from one another and share information.
At this point, we as the parents probably know more about this condition than the medical professionals do.
Taking on an Important Mission
In between our focus on Elouise, we are working on trying to figure out ways to expand our foundation’s presence so we can help find a cure, get more attention, and gain national recognition. In many ways, this endeavor is somewhat therapeutic.
I have found there to be so much kindness in this world—in many cases, from people we don’t even know! The number of people who have come forward wanting to help in some way is surprising and truly inspirational.
Holding on to Hope
Lastly, coping with a sick child requires hope. And my hope comes from a higher power. One thing we have come to learn is that you just don’t know what might happen, who might come forward, and how that could help.
We cannot do that without getting the word out and drawing attention to the disease.
Don’t get me wrong… There are days that are dark, and not one day goes by without me wondering what is in store for Elouise and, in turn, us. But if you allow that to get the better of you, then you are losing sight of the good things that can happen.
Without your faith, then if you give up, you have no hope!