Medical Mom Monday - Amber
Harper's diagnosis : HLHS, Heterotaxy, Primary Ciliary Dyskinesia
Advice you would give to another family?
The heart journey is not easy but it is worth it. There will be moments that bring you to your knees but there can also be moments of pure happiness and joy. Grief and happiness can coexist.
So much time and focus will be given to your child, but it is crucial to find the time to focus on yourself and maintain healthy habits. This will make it easier to show up as the best version of yourself for all of your kids, including your heart baby.
When it gets too heavy, ask for help.
Find a heart family that gives you hope. Cling to that hope and the potential for a long, fulfilling life for your child.
What’s the biggest challenge you’ve faced ?
The day we found out about our daughter’s heart and how it will always be a part of our lives, no matter what. Her issue is never completely going away and we know that it will be a continual challenge to carry that through every single day. Maintaining good emotional health and balance so that I can be the best Mom possible to her and our other daughters is difficult, but is something I continually work through.
After Harper was born, I effectively had to step out of my 10+ year career to stay home and care for her. While not every Mom would have to do this, it is something that has been a challenge for us, but I also see it as a blessing in getting to spend so much time with her. We've had to restructure our lifestyle to accommodate Harper's needs, and I will never regret that, but it is not without challenges for our family.
The uncertainty of her future is more than anyone can truly bear. Grieving the potential of losing your child and the impact that will not only have on you but your other children. It is very challenging to not cling to the idea of what our lives could look like if Harper wasn't impacted by congenital heart disease.
How do you balance taking care of your child’s medical needs while still taking care of your family?
Similar to any other life changing event, this has taken some time and major effort to get used to. We have really tried to keep our lives as normal as possible for ourselves and our other children by working Harper's needs into our daily schedule. For our family, we have made this "normal", and we know that it may be different from other families' "normal". We have gotten her older sister involved in Harper's treatments and allow her to be a part of her journey. We talk openly about our situation within our family and with other families as well. Harper has since started preschool and is truly thriving.