Before having a baby, all parents try to imagine what it’s going to be like. We try to imagine what color eyes they will have, what their personality will be like, and who will they look like. We read books, we seek out advice from other parents, we buy cribs and car seats, we learn about developmental milestones. It’s so exciting to set up your baby’s room, fold tiny clothes, and dream about your future child. We try to imagine how much our lives will change. But, one thing that we can never be fully prepared for is something being wrong with our child. It’s terrible and heartbreaking to think about, and the optimism of being a new parent can usually outweigh all the “what if” fears and anxieties.
During this past year, our family gained three baby boys! We were so excited to welcome them. But, two of the three babies experienced a health crisis. One of my nephews was hospitalized and in the neonatal intensive care unit for a month after birth, and it was one of the most difficult times our family ever experienced. A few months later, another nephew was diagnosed with a serious and very rare genetic disorder called Joubert syndrome. With no family history of genetic issues, this was quite a shock and also very difficult. Each situation is very different, as one was acute and the other will last a lifetime. But from both, so much can be learned.
Of course, the well-being of our children is the most important thing for most parents. But from this, we learned not to take being healthy for granted. It’s one of those super important things in life that you don’t realize how lucky you are to have until it’s taken away. We learned how important it is to have a support network, a tribe, people you can call on for help, a village….whatever you want to call it; no one can do this alone. It’s so hard to see people you love suffer, but being present in those awful, stressful times can make all the difference. And we learned that it’s important and helpful to reach out and meet others who have shared similar experiences. Even as I’ve tried doing everything I can to support my siblings, I know I can’t fully understand what they are going through the way a parent who has experienced it can. They both needed to connect with other families and share experiences, and it continues to help them cope.
And lastly, it was a harsh reminder (but in a “silver lining” sort of way) to cherish each moment with your babies. From day one, I’ve always tried my best to not “wish away” any age or stage, because I know how fleeting childhood is. Parenting is hard stuff and there so are many frustrating moments. It’s certainly not always easy, but I hope we can all do our best to enjoy it all, hug them tight, and count our blessings.