Of your six children, one has Down syndrome. What was your initial reaction to the diagnosis and how did you initially cope?
Finding out that Finn has Down syndrome was shocking and devastating. He is our sixth child, and after having previously given birth to five healthy, “typical” children, I guess I had developed a sort of arrogance: I just assumed that I would give birth to another healthy, typical baby. Finn was a planned home birth, as was his sister before him, so I had home midwifery care prenatally. Based on that, and my assumption that we didn’t have anything to worry about, I never did any prenatal screenings that would have detected his Down syndrome, despite the fact that I was 40 years old. I have come to develop a lot of strong feelings about prenatal screenings since Finn’s birth, actually, but I only bring it up here to say that we did not know about his Down syndrome until after his birth, whereas some parents know before their baby’s birth.
Finn’s birth in a birth pool in our bedroom was uneventful as far as births go. I think my midwife suspected something as soon as he was born based on her examination of him, but she didn’t say anything right away. I can imagine that for a midwife who has nurtured such a personal relationship with her clients, it would be very difficult to deliver news or suspicions about the baby that might have the power to pull the rug out from under the family.
To me, Finn looked like a “normal” baby, so I didn’t suspect anything. He slept almost constantly from the moment he was born, so for the first several hours, I only saw him asleep. There came a point, however, the afternoon following his birth when he opened his eyes, and suddenly, it dawned on me that he looked like he might have Down syndrome. I still remember very clearly my stomach just turning into a ball of knots at that moment, but I brushed the thought away because it just seemed so improbable . . . that’s the kind of thing that happens to other people, you know? My midwife was actually sitting on the bed with me then, as she had come back for our first postnatal visit. She had gone home and done a lot of research, and now, she sat there examining Finn in great detail – much more thoroughly than I remember her examining Finn’s sister when she was born 21 months earlier. She then gently pointed out a few things–the single line across each of his palms, his crooked pinkie fingers–and said I should ask our pediatrician about them. “Why?” I asked her. “Because sometimes these can indicate certain anomalies in the baby,” she answered. I knew in my heart at that moment that Finn had Down syndrome, although it would be several days before we had a genetic workup done and received confirmation.
Shortly after that exchange with my midwife, Finn began spitting up blood, and my husband and I rushed him to the emergency room. He was diagnosed with a duodenal atresia–or intestinal blockage–which I later learned is fairly common with Down syndrome. He had surgery to correct it at one day old and spent two weeks in the NICU. That was a devastating time for our whole family. We had planned a home birth and had fully expected to be at home bonding with this newest member of our family, and instead he was in the hospital recovering from major abdominal surgery, hooked up to all kinds of tubes and wires and monitors, and I couldn’t even nurse him in the beginning. It was during his stay in the NICU that we learned that he does, indeed, have Down syndrome.
The diagnosis was very difficult to come to terms with. There is a grieving process. All of your dreams and expectations for this new child suddenly must change. There is a lot of unknown, a lot of fear. And unfortunately, a lot of misconceptions based on old ideas and outdated stereotypes.
It’s been a process coming to terms with Finn’s diagnosis. I can’t say that it ever interfered with my ability to bond with him–if anything, I have felt more fiercely protective and in love with him even than I did my other babies–but it’s still been difficult to know that the future I had unconsciously mapped out for him–the dreams I had for him that I didn’t even realize I had– that all of that was not to be–or at least not to be as I knew and expected it.
I remember thinking, when Finn was a tiny newborn in the NICU, and we received the news that he has Down syndrome, “I don’t know how to be a mother to a child with a disability. Some days I barely feel qualified to parent my normal children! How am I supposed to do this?” But I realized that mothering Finn is much the same as mothering any of my other children. His basic needs are the same: food, shelter, clothing, and love, lots of love. There are things that are different in his care than my other children: he’s undergone three surgeries now, whereas none of my other children have had any sort of surgery; he has physical therapy once a week to help him develop his motor skills; he doesn’t meet his milestones on the same time line that the other children did. But for the most part, he’s just a baby, just like they were babies. I feed him. I clean him up. I rock him. I hold him. I sing to him and call him silly little nicknames. I breathe in his sweet baby smell and nibble on his toes. It’s not so different. It’s not scary like I thought it was going to be.
I’m sure that as he gets older and his needs and abilities change, there will be aspects of parenting him that will be different from anything we’ve experienced in parenting the other children. Sometimes I still get scared about the future, about Finn’s future, about our ability to meet all his needs and give him every opportunity he deserves. But for the most part, we just try to appreciate now.
Do your other children understand that your son has special needs? Do they help you and your husband, as needed?
Finn’s older siblings are 12, almost 7, 4 and 2 years old. Kevin, our oldest, obviously has a better understanding of Finn’s Down syndrome than the younger children. Kevin has done his own research and has become an advocate among his peers, refusing to tolerate words like “retard,” and taking it upon himself to educate his friends.
Joey, who is almost 7, has a very basic understanding. He knows that Finn has something called Down syndrome, and we’ve told him that it means that it might take Finn a little longer to learn how to do certain things, but really, I don’t think Finn’s differences at this point are so glaringly obvious to the other kids that they really see him as anything other than their baby brother who is really cute. The twins, age 4, like Joey, know that Finn has Down syndrome, but their grasp of it is pretty nonexistent at this point.
All of the kids are very loving and affectionate with Finn. And at this point, at 11 months old, Finn doesn’t really have “special needs.” He’s healthy (he doesn’t have any major medical issues); he doesn’t require any special equipment or medicine. He’s a baby. The kids love him and play with him like they would any other baby.
When we are teenagers, it seems like time passes so slowly, especially if you’re unhappy. Could you have ever imagined having the full and busy life you now have back then? If you’d known what was in store for you, how might it have changed your attitude about life?
I spent the better part of my life in a state of deep unhappiness. When I was younger, I used to fantasize about being happy some day, but it was always with a sense of waiting for happiness to find me. It wasn’t until I was in my thirties that I realized that happiness isn’t something that randomly finds anybody–that I had to claim my life and make my own happiness.
Back then, when I was an unhappy teen, no, there was no way for me to imagine that my life would somehow be so profoundly different than it was at that time. How can you imagine something you’ve never seen or experienced? I figured my life would follow a pretty predictable line: I would someday get married, have a couple of kids, have some kind of job, and beyond that, I didn’t know. I was intent on escaping the unhappiness I lived in, and my one big grand attempt at escape – running away from home–really turned out to be trading one kind of unhappiness for another. So even in my adult life, I gradually came to accept that happiness was a myth, that the best I could hope for was to get by.
If I could have foreseen what my life would someday be like–full of life, and love–I’m not sure how it would have changed my outlook about life back then. I suppose I would have lived in a state of biding time. Maybe I would have learned a lot sooner than I did that it was within me all along to make my own happiness.
Yes, my husband was diagnosed with stage 3 colorectal cancer this past February. It was one of the single most devastating things that I/we have ever been faced with. This is another one of those things that you just don’t expect to happen to you, to your family. And the fact that this type of cancer typically strikes older people, and my husband is only 42, made it all the more shocking. It all seemed–and still seems–so unfair. We’re happy. We have six children who need and adore their father. How can cancer be a part of our life?
Fortunately, his prognosis is good. His doctors have remained very positive and optimistic that Michael will overcome this.
The treatment is a long, tortuous process, however. First, six weeks of simultaneous chemo (delivered through an infusion pump into his arm around the clock) and daily radiation. Followed by more chemo, a different cocktail of poisonous meds. Followed by major abdominal surgery, which at this writing, we are anticipating in about a week. The surgery will require several days of hospitalization, followed by several weeks of recuperation. Subsequent to the surgery, he still has several more months of chemo.
It’s been difficult, to say the least. It is like watching my husband be slowly tortured, and it is torture for me because I am utterly helpless to ease any of this for him. Compound all this with other factors, like the fact that my husband still is the sole provider for our family (how can I go get a job? I’ve been out of the workforce for seven years now, I have six children to care for, one of them a child with a disability). That has created an enormous amount of stress and pressure for him. We have very little family support, so we are isolated in this experience to a degree. The kids are stressed and scared and acting out with high emotions, clinginess, fear, etc.
However, this ordeal has also strengthened our marriage, there is no doubting that. Michael and I are closer and stronger together than we’ve ever been.
Cancer forces you to take stock of your life and your priorities. I think we have a deeper appreciation for everything we have, tangible and non-tangible.
In my own life, sometimes I feel like no matter what trials come my way, I will never feel as downhearted as I did as a kid and young adult. Do you ever feel that you’ve reached the limit of what you can handle?
With all the trials and hurdles you deal with, are you still happier than you were as a teenage runaway. Yes, it’s amazing even to me that even in the midst of everything going on in my family, I am truly happier than I’ve ever been. I love my life. That is not to say that I embrace the challenges, like my husband’s cancer. Yes, there are times when I feel like I can’t deal with one more thing, times when I feel like I am going to fall to pieces. And I do. I lock myself in the bathroom, or in my bedroom, and I allow myself to fall apart for a little while, crying my eyes out and ranting about the unfairness of it all. I write, which is extremely cathartic for me. And then I pick myself up, dust myself off, and go on.
How have your children responded to your husband’s illness? How do you help them to cope?
When we learned that my husband has cancer, we sat the kids down and told them very matter-of-factly, “There is bad news and good news. The bad news is that Daddy has a sickness called cancer. The good news is that the doctors are going to work very hard to make Daddy better.” Kevin, as the oldest, was the only one who seemed to have some understanding about how serious it was. He asked, “Is Dad going to die?” That was hard, knowing that he would carry that fear, the same fear we were carrying.
At first, the kids seemed to be doing really well with the whole thing. For a while when Michael started undergoing treatment, the side effects were not extremely severe. He was still going to work every day. So the kids seemed to take it in stride, and we congratulated ourselves on how well we had handled it with them.
But over time, the side effects from the chemo and radiation became more obvious, more severe. And there’s never been any getting away from the fact that Dad has a “tube” in his arm (a PICC line, which is a port through which the chemo is delivered into his body). He’s had it since February, and it’s a constant reminder that he is sick. Over the last few weeks the kids have manifested some behaviors that tell us that they are, in fact, having some trouble coping. Emotions have been running very high with some of them; there has been a sharp increase in tattling, tantrums, and other attention-seeking behavior; they’ve been very clingy with Michael, becoming very upset when he leaves the house for anything, even to go to the store.
So we’re just trying to be very conscious of the kids’ feelings, to stay in tune to them and talk to them. The kids’ teachers are all aware of the situation, so we are in touch with them, as they are on the lookout for acting out by the kids which may indicated their trouble dealing with their dad’s illness. We’ve spoken to a counselor about how to help the children cope. It’s a day-by-day thing.
Considering that you’ve likely now reached the center of your life, how has your attitude changed from the girl who ran away?
I think the sum of my lie experiences has made me cynical and skeptical to a degree, but I am no longer that frightened, hopeless girl. I understand that nothing is forever–not the bad or the good. And I understand that it is up to me to make my own happiness in this life.
It is difficult to articulate how he has changed me. There are so many feelings swirling around in my head and my heart concerning Finn, that transfer to a much wider view of the world: acceptance, a desire to embrace every “under dog,” the fact that every life has value, the realization that my heart is bigger and more resilient than I ever thought possible.
After all that you’ve experienced and seen in your life, what can you say to folks–teenagers or adults–out there who believe there is nothing to live for, or that their hope is limited?
Everybody has something to live for, even if it’s merely themselves. Whatever somebody’s present circumstances are, there are always ways to change those circumstances. It is within everybody’s power to make their own happiness.
Join Lisa and I for final thoughts on July 7th. We’ll share a special list of adult actions that may have made a positive difference for us … once upon a teenage time.