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6527212 July 28, 2009

All My Children: An Aberration Story

I didn't feel loved or important and I know I don't want that for my children.

All hail the large family! I grew up watching The Brady Bunch. And like many who evolved from small families, I've always been fascinated by our larger counterparts. At times when my brother had no interest in playing with me, I thought, If there were just one more of us! But who knows, maybe that one wouldn't have wanted to play with me either. There are no guarantees in life or in family.

My husband is the youngest of five, all only six years apart (total). When I married into his family, they seemed like a cool club to which I didn't yet belong. I wondered why my family never seemed like a club. We were more like four people from four different clubs trying to figure out what to do next, what to think, what to say, and how to feel. Although we all loved each other in unique ways, there lacked a connective thread I saw in other families. Now, I realize it has nothing to do with size; size definitely doesn't matter in this situation.

Heather, the latest member of the Aberration Nation works each day to provide that all-embracing connection within her young family of eight. So why is this an aberration? Because it's not always easy, that's why! As a family grows, love can grow, but so can the complexity of relationships, group dynamics, calendars, homework, meals, taking this one there and picking up another over here. I can't imagine the energy required when a family of six children are all young, and the continuous insight and careful word-choice necessary when they're teens. I know from experience that the energy required to raise small children changes into a new, sometimes more difficult energy as they mature and explode into young adults filled with new intellectual thought processes, critical choices, and deep emotion. Watching my daughter experience pain as a teenager was a new experience, a new wound that I'd never felt. It's a pain that forces you to bite your lip and pray, sometimes knowing there's no other alternative.

Heather and her husband, like all of us who are parents, are on a roller coaster. Sometimes you just want to slow it down, stop it, or jump the hell off. But the thrill of the downhill is so victorious, so absolutely exhilarating that we hang on tight. We don't let go. We believe in the ride, knowing it doesn't last forever. One day the little children we loved so dearly morph into something that is altogether different yet similar. In a strange way, they're gone. Whether across the country or across the street, they depart.

I admire the g
oals Heather has established for her family. Knowing what I know, things may not turn out like a perfect pie-in-the-sky dream, but she's doing her absolute best to ensure her children feel the type of beautiful connection that serves as a powerful brace throughout life ... come what may.

You have six children. What compelled you and your husband to have such a large family in a culture of shrinking families?

My husband and I both come from large families. He has six siblings and I have five. When we were dating we discussed
children and both wanted to have a large family. Then reality hit after we had our first two children (boys) 16 months apart and we began to question how many children we really wanted. The two boys were more than a handful and kept us very busy.

Our children come in pairs (the first one planned and the second one a nice surprise). As I mentioned our first pair (boys) are 16 months apart. We then had a two year break and had our second pair (girls) 18 months apart (the younger girl, Morgan, in this set has Down syndrome). I knew I wanted more children after Morgan but also wanted to give her as much time and attention that she would need before making that decision. It was an unknown journey and I didn't have any idea the impact a child with special needs would have on our family. But I also knew I would have more children at some point. I felt like I was allowing fear and defeat enter into my family if I stopped after Morgan and also sending a message to others that it really was a negative impact on our family even though I didn't feel that way. I know that sounds ridiculous, but it was what I felt at
the time.

We waited until Morgan was walking (29 month old) and got pregnant again. It took a lot of faith and hope to decide to get pregnant again, more so for my husband. It wasn't like our other pregnancies that were filled with joy and excitement, this pregnancy was filled with fear and uncertainty of everything that could go wrong. We knew too much. I lost that baby (a girl) at 18 weeks. It was extremely hard on my children and my husband (he had a difficult time having to watch me go through the pain of labor and not end up with a baby). The doctors told us the odds--60-80% of 2nd term fetal demises are caused by chromosomal anomalies. It made us nervous to try again. Maybe I was too old (34 years old) and my body just wasn't meant to have more children. We decided to have DNA testing to help us determine if we would try to get pregnant again. Everything came back perfect ( a word I hate)--nothing wrong genetically and nothing wrong structurally. We still don't know why we lost that baby.

We got pregnant three
months later and decided to have prenatal screening done for Down syndrome at 14 weeks even though we knew the outcome wouldn't make any difference in our decision to have the baby. I just needed to know. The tests came back showing the risk extremely low. It was a difficult and stressful pregnancy. I had an abnormal ultrasound at 16 weeks that showed something wrong with one kidney. The perinatologists weren't sure exactly what was wrong since it is difficult to make prenatal kidney diagnoses via ultrasounds. They weren't sure if it was MDKD or hydronephrosis. The latter one is common in Down syndrome which raised my risk of carrying a baby with Down syndrome. I refused the amniocentesis. I had just lost a baby at 18 weeks and wasn't about to put this baby at risk. It wasn't until after he was born that we got the diagnosis--MDKD (multicystic dysplastic kidney disease) which basically means he has only one kidney. The other one never developed. It shouldn't affect him and he has no restrictions. It was an emotional pregnancy and my husband knew that we were done. We were very busy with five children and our new baby was a difficult baby with extreme colic for six months. My husband wanted to do something permanent but I wasn't so sure we were done. I just didn't feel like my family was complete. Maybe it was the baby I had lost. I knew it wasn't fair for me to push him into having more because realistically maybe I would never feel done.

Then when my baby number five was nine months old I started to feel sick and dizzy. It took me awhile to realize I was having pregnancy symptoms. I took a test and it was positive. I was terrified to call my husband. He had made it absolutely clear that he did not want any more children. We both felt maxed out with five. I called him and he didn't want to believe me. I think I took 3 pregnancy tests before he was willing to accept it. We waited to tell our families until I was 20 weeks along. We were a little embarrassed to tell people. It was obvious to everyone around us that we were already way over our heads with the five children we already had. Why were we choosing to add more to the chaos? Fortunately everyone was very excited for us. We both got more and more excited as the due date grew closer. We welcomed baby number six last year into our family--a baby girl. After she was born I just knew our family was complete. She is the perfect ending to our family.

What are the most rewarding and most challenging facets of being part of a large family?

I absolutely LOVE having a big family! I look at families with only a few children and wonder how the parents were able to stop. Being a mother is the most amazing thing I have experienced. There is nothing that compares to the overwhelming feeling of love that I have for my children and husband!

The most rewarding facet is that my children have each other. They are never without a friend. They also learn valuable life lessons of sharing, cooperation, communication and hard work.

Even though I wouldn't change having a large family, there are definitely challenges that come with it. The biggest challenge for me is that I don't feel like I can take the kids and go do fun field trips and activities by myself. We spend a lot more time at home than I would if I had fewer kids. It is hard to know if this is because of having so many children or because of the challenge that Morgan presents with being a 'runner' and her special needs.

Another challenge is it's difficult to give them all the time and attention that they each need. My daughter, 18 months older than Morgan, is kind of my 'invisible child'. It's ironic but sometimes feel like she is alone in a home full of children. She is independent and tends to do her own thing. I wish I had more time for one-on-one dates with the children. I don't want any of my children to feel like they got lost in the shuffle. I hope each one knows how much they are loved and valued in this family. I didn't feel that when I was growing up in my family. I didn't feel loved or important and I know I don't want that for my children.

I have two daughters who are eleven years apart so I can’t even imagine having two or three kids close in age, much less six. How do you make it through each day and get everything done?

I don't home school!! I live for routine and structure. I have to, otherwise it would be complete chaos. Each child has certain jobs that they are expected to do before they can play with friends (practice piano, clean bedroom and make bed, clean an assigned bathroom and living area). We have also followed a nap and bedtime schedule. I have my home completely child proof so I can relax in my own home. It also helps that I don't know anything different--this is my life! I am used to the busyness, chaos, constant cleaning, noise, and juggling that encompasses each day.

One of your daughters has Down syndrome. How has this changed the family dynamic? What challenges and rewards has her condition given to the family?

It's really hard for me to answer how it has changed our family dynamics because Morgan joined our family when it was still so young. My oldest had just turned five when she was born (I had four children under five years old) and we were still figuring everything out. I often think about how our family would be though if she were a typical six year old. It's hard to not think about how things would be if she wouldn't have been born with Down syndrome but I think it is easy to get caught up in those thoughts and lose sight of the gift that each child brings to their family.

I think Morgan has been more influenced by being in a large family than her presence has influenced my children. She has behavioral issues with pushing and getting along with other children and I think the chaos in the home has added to her behavioral problems. She doesn't fit the 'happy and sweet' stereotype that is so commonly used with Down syndrome. She spends a lot of time upset and ornery.

My children have a great respect for others with special needs especially Down syndrome. They love it when they see someone else with Down syndrome out in public and always have something positive to say about that individual. They see Morgan as a blessing. They have overheard me talking on the phone to new moms in the 'Down syndrome club' and wonder why the mom is sad or upset that her new baby has Down syndrome. I showed them a picture of a family with two children whom have Down syndrome and they said, "Wouldn't that be so cool? They are so lucky!" They have learned that all of us being different is what makes the world such a beautiful place.

I think the biggest challenge for my children is being patient with Morgan's needs. They treat Morgan like everyone else--which is great, but she does require some things to be done differently. For example, she acts out when she wants their attention and they get mad at her for hitting or pushing instead of just including her and understanding that she acts out when she can't communicate her needs.

Do your other children understand the full extent of Morgan's challenges? How do they cope, and how do you and your husband help them to cope?

I don't think they do understand the full extent of her challenges. I don't even think my husband or I understand the full extent of her challenges. We try to just take one day at a time and focus on what her current needs are and not let ourselves become overwhelmed with the future and what ifs.

We chose to not tell our children anything about Morgan's diagnosis when she was born. They were five, three, and one years old and we didn't think they needed to know that something was different with their sister. We wanted them to love Morgan for exactly who she was, not a diagnosis. They knew she had something wrong with her heart and needed surgery and we also told them that it might take Morgan a little longer to learn how to do things and that was why she was having therapists come into the home to help her learn how to crawl, walk and talk. I really think it has only been in the last few years that they have realized what it means to have Down syndrome because the delays are more obvious as she gets older.

As a child, my brother had a learning disability. Due to this, my parents gave him much more one-on-one attention than they gave me. Although I understood and learned to be highly independent, I also suffered for it. How do you manage to give each child the individual attention they need, particularly with a challenged child in the mix?

Morgan does take more of my time than the others. I have spent A LOT of time this past year trying to get her potty trained and reading. I try to include the younger kids in whatever I am doing with Morgan. If we are in the bathroom working on potty training and reading books together than I usually have my baby on my lap and my 2 year old toddler in the bathroom with me all reading the books together. I feel like Morgan takes up as much time as a toddler does. She is independent in many areas but also requires constant supervision when her little brother and sister are around. I think the bigger problem with one-on-one time is due to having such a large family and not so much the special needs factor.

No parent is perfect. We try to do the best we can for our children. What are your primary parenting goals?

I want to raise happy, respectful and responsible adults that have a love for their Savior, Jesus Christ. We are members of the Church of Jesus Christ of Latter-day Saints ("Mormons") and the gospel is a part of our everyday lives. There is a lot of pressure in our church to raise your children to be active members in the church with their own families. I know a lot of people in the church feel like they have failed as a parent if their child is no longer active and not living their life in accordance to the things they were taught. I don't agree. Although it would be difficult if one of my children chose to not be active in the gospel, I hope it wouldn't make me feel like I had failed in some way.

We spend Monday nights discussing different gospel principles with the children (Family Home Evening). My children LOVE this tradition. They are the ones that remind us about it each Monday. They love having all of the family together and being part of the planning whether it is being in charge of the prayer, song, lesson, activity or treat. We go to church every Sunday for 3 hours. We honor the Sabbath Day and do not shop, boat, swim, ski, do yard work, etc. on Sunday. We spend Sundays together as a family.

How do you and your husband manage to make time for each other?

A happy marriage is our biggest priority and this may be surprising but we actually spend a lot of time together. We both love to travel and go on several vacations a year, just the two of us. We have a couple of babysitters that are absolutely wonderful and we completely trust with our children. It is expensive to pay for someone to come into our home (it's usually the biggest expense of the trip) but the reconnection and individual time it gives us (not to mention the much needed break from my busy life at home) are more than worth it!

I also mentioned that we have scheduled bedtime for the kids. Bedtime is 8:00-8:30 pm during the school year which means we have our own time together almost every evening and usually end up watching tivoed shows or renting a video. We also try to have a date night once a week.

For those of us who are parents, that role is likely the top life-changing experience we encountered on our way to becoming responsible adults. What are the top three life lessons you've encountered and embraced as your family has grown?

Wow!

1. True happiness is found through sacrifice and love.
2. Being a mother to a daughter with special needs has opened my eyes to the world of disabilities and the potential each individual has to make a difference in this world. Every child is of worth and deserves acceptance and love.
3. Nothing is more rewarding or harder than being a parent! And I need a lot more patience!

Read more →

6527212 July 03, 2009

Runaway Lisa: An Aberration Story (Part 3)


... I understand that it is up to me to make my own happiness in this life.


Welcome back to the ongoing story of Lisa Morguess. Go here for Part 1, and here for Part 2 of Runaway Lisa: An Aberration Story.


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.

Has mothering a child with Down syndrome been different than what you expected?

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.

In the midst of handling your overflowing life, your husband received a cancer diagnosis. Can you tell us about that?

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.

What has your son's Down syndrome taught you about life and love?

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.

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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.

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