During my HDFN-affected pregnancy and after my daughter’s early arrival, life seemed like a storm that wouldn’t let up. In the midst of all this, I couldn’t forget about my 15-month-old son, who needed me too. Balancing his needs with those of my unborn daughter who had a rare disease felt like trying to juggle too many balls at once.
Each day, my husband and I had to figure out who would take our son to daycare, who would pick him up, and where he would stay overnight. Keeping track of daycare fees and schedules added even more stress. Through it all, we had to make sure we were there for our confused little boy, who couldn’t understand why everything was changing. This change was very different from going to deliver and returning two to three days later–there were months that we had no set schedule and disrupted routines.
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Although his whole world was flipped upside down, thankfully, our family was there for us. They understood the needs of our fifteen-month-old and also how scared we were for our daughter, how worried we were about finances and how much we missed our son while we were in the hospital with our daughter. Their support meant everything to us during such a tough time. They picked up our slack so that we could take care of our unborn baby.
When we finally brought my daughter home from the hospital, things didn’t magically get better. I noticed changes in my son. He used to love bath time, but suddenly he didn’t want to take baths anymore. He became much more clingy and cried whenever we had to leave him at daycare, scared we wouldn’t return.
It was hard for all of us, but especially for my son. He didn’t understand why things were different, and it broke my heart to see him struggle. He needed us more than ever, and we had to be strong for him.
If your infant has been diagnosed with HDFN, I would advise you to create a consistent schedule for your children at home. Having the same routines while you’re gone will make the transition easier for you. It’s also important to go out of your way to thank your supporters. Sometimes a “thank you” will go a long way. If your kids are older, talk to them about the process and update them often. One thing that I loved to do was to FaceTime or video chat family and friends back home for support.
Through it all, love kept us going, even when things seemed impossible. We found strength in our family and friends, and together, we were able to face whatever came our way.
