Parenting would be so much easier if children came with instruction manuals! The years are going by lightning fast, and we’ll be left with an empty nest before we know it. This means John and I have only one shot to do this “parenting thing” right. I’m a planner by nature. I feel an odd sense of comfort knowing I have multiple backup plans for my backup plans. And this was how I functioned before I entered HemoMommy Land!
Maybe I’m a bit of a control freak, but you kind of have to be that way when you’ve got small children to care for. I like to be prepared for the unexpected. When Niki was first diagnosed, I didn’t have quick access to books on bleeding disorders. So, when I wasn’t at her bedside in the NICU (neonatal intensive care unit), I was in the hospital lobby using the Internet to research everything about her emerging treatment plan. Researching gave me a sense of control over a situation I had no control over.
Eventually, I was able to obtain a few books dedicated to raising a child with a bleeding disorder. I guess you can say I did get to cheat a little with all those “instruction manuals” for Niki. Aside from educating ourselves, our family and our friends, it was equally if not more important for John and me to educate our sons about Niki’s disorder too. We didn’t want them feeling “out of control” either.
The Big Brothers
Kevin and Anthony (“Boo”) were 5 and 3 when Niki was born. When they met their sister for the first time, she was in the same NICU where Ethan had been. She had all sorts of wires and tubes connected to her. This sight jogged their memory about Ethan’s situation a year before. One of the first things Anthony pointed out was the fact that Niki was “in a crib like Ethan’s.” We explained to the boys that Niki had “special blood” like Ethan, but she wasn’t going to heaven. The boys asked tons of questions, and we tried to simplify our answers as best we could.
Sure, they nodded like they understood, but we didn’t know how much they really absorbed from that first conversation. In the weeks following her birth, they visited her frequently in the NICU. They peered curiously at her Broviac® catheter and joined in our euphoria when eventually she came home shortly after she turned 3 weeks old.
John and I tried to find creative ways to get them involved in Niki’s care. They were very interested in their new baby sister and all the “equipment” she came with. We taught Kev and Boo the proper nomenclature for all of Niki’s infusion supplies. They know what heparin is and how to perform the “push-pause” technique for flushing CVADs (central venous access devices) (with adult supervision, of course!). John and I tried our hardest to make all of the medical madness fun for the boys. They’ve even read children’s books about hemophilia and von Willebrand disease.
We never hid anything from them. They would watch us draw Niki’s labs and gather supplies for her infusions. Eventually, things like needles and blood didn’t seem to faze them anymore. John and I would prep the boys before we took Niki to her almost-monthly emergency room visits. (She often developed high fevers when she had her Broviac.) Whenever she was hospitalized, we would use our cell phones and picture messaging to keep in touch with the boys. It was important that Kev and Boo understood that we were still thinking of them even when we couldn’t always physically be there. Taking care of Niki (and each other) became a family affair.
How Are the Boys Handling This?
However, I often wonder about what is going on in those little minds of theirs. I talk to the boys on a regular basis about their feelings and make sure they know how much we love and care for them. I remind them that they are special to me, too! As much as I try to communicate with Kev and Boo, I don’t know how our “new normal” is truly resonating within them. And that scares me.
Recently, John and I attended the boys’ parent-teacher conferences. They are doing very well scholastically. Both are ahead of their class, and I couldn’t be prouder. But one small issue was brought up by Kevin’s teacher: his mystery ailments. He had two last week—first, left side pain (with no injury) and earlier that day his “hair hurt.” Boo doesn’t complain of mystery ailments, but I’ve noticed that he needs a little extra comfort when he’s hurt at home. I have to bandage excessively, and only using Niki’s supplies will satisfy him. A simple bandage isn’t enough for even the tiniest of cuts.
Does this mean I’m not giving my boys enough attention? Is Niki’s bleeding disorder consuming their lives too much? Did we make the wrong decision on educating them in the manner we did? Each child is different, so no amount of reading can tell me how my kids will be affected by all of this. Sometimes I’d like to have a sneak peek at the future. I wish I didn’t have to constantly second-guess if I’m raising my boys to be emotionally healthy individuals. I wish I knew all the answers, but I don’t. I just have to hope for the best.
And somehow, I’ve got to learn to be OK with that.
Read more about Tiffany's life at The Art of Lion Taming.