The triplets join Harlan during one of his recent hospital stays. The Steuer family has had to learn a lot of frightening new vocabulary words as they navigate Harlan’s illness and treatment.
When your kids are babies, you look at them with wonder and amazement. In your mind, you are wondering when they will walk, who they will look like and what their first words will be.
When that first word is spoken, the entire family is alerted – Facebook, Twitter and Instagram are updated. There is so much excitement! As the child’s vocabulary grows and sentences are put together, there is even more excitement because the child is now communicating! Even if our innocent little cherubs pick up a word (or a few) that is not exactly G-rated, we tend to celebrate.
What happens when the kids pick up vocabulary words that intimidate adults?
In recent months, our family has been dealing with some scary medical phrases that even Harlan and I do not always fully understand. Olivia, Benjamin, and Rebecca can hear us talking and know that we have always welcomed questions and have tried to give straight-up, age-appropriate answers. Since that fateful morning in December, our family is learning all kinds of new words – words like dialysis, fistula, spindle cell, cancer, biopsy, transplant, and End Stage Renal Disease.
We have explained each word to the kids as best we can. Sometimes these vocabulary lessons have fallen on me alone because Harlan was in the hospital waiting on results or having dialysis. Many times, the conversations happened over dinner or during the night when little minds have a tendency to go into overdrive. I have tried not to scare them, even when I have been most definitely afraid. To me, the kids are still tiny and need protection.
I told them Daddy needs dialysis because that is the way toxins are cleaned out of the blood and his kidney can’t do its job because there is something growing there that should not be. I told them the doctors were going to take a little piece of it out and do some tests. Eventually, after many tests, surgery was performed. In the end, Harlan lost the only functioning kidney he had, along with a very nasty tumor. Dialysis became a lifetime commitment.
Our new normal is still a bit rocky. It includes words like dialysis, fistula, transplant and End Stage Renal Disease in plenty of conversations. We chose not to keep what is happening from Olivia, Benjamin, and Rebecca because it involves them and has an impact on their lives. In a few weeks, each of the kids will have ultrasounds to make sure they have two functioning kidneys. If we can find out now instead of when they are 44, their lives may be a bit easier.
Seeing their father hooked up to a dialysis machine may not be a fun memory for them, but they will remember that when Daddy was sick, he did all he could to get better. They will remember the Chanukah that we made a menorah out of LED candles and a Styrofoam cup so Harlan could celebrate in the hospital. They have each reached out to hold their father’s hand to let him know he is loved. Each one has helped their Daddy is the best way possible – with lots of love, and love can conquer just about anything.
Our new reality isn’t so bad. “Normal” and “typical” are not words we used much anyway. Our family is together and Harlan is smiling. Who could ask for more?
For more information on End Stage Renal Disease please go to the National Kidney Foundation at www.kidney.org.
Jennifer Steuer is an Albany mom whose busy household includes her husband, Harlan, and 8-year-old triplets Olivia, Benjamin and Rebecca. Follow her on Twitter @Got_Triplets.