How Does a Cochlear Implant Sound vs Normal Hearing? Barb Cole Shares Her Perspective

Our daughter Sonya was born deaf but with the help of cochlear implants, she now hears most everything we do, albeit differently. Unlike hearing aids, which amplify sound, cochlear implants bypass the damaged area of the ear, and stimulate the auditory nerve directly, using electrodes. The signals produced by the electrodes are then recognized as sounds by the brain. Since Sonya is only 22 months, she unfortunately can’t describe what it is like to hear with cochlear implants.

My family’s friend Barb Cole, however, can! Barb suffered from degenerative hearing loss, and received a cochlear implant in her retirement. In the following post, Barb shares her difficult yet fascinating story:

My Cochlear Hybrid Implant Story
By Barb Cole

In the beginning, I did not realize I had a hearing loss until a colleague told me I was talking very loudly on the phone. I was only in my mid 30s, but found the need to gradually increase the phone’s volume at work, so I could hear my clients.  I probably had hearing issues prior to this intervention and was not aware of them. I saw a doctor, who told me my hearing was borderline and that at this time I did not need hearing aids. 

Ten years later, I decided to get my masters in special education. I finally got hearing aids in order to work with my students (children are more difficult to hear than adults for me). For the next 15 years I taught special needs students. I loved it, but my hearing was declining and I needed to make a career decision for my students and for myself – and so I retired.

At that time, I had received new hearing aids, but they were not really helping, so I looked into cochlear implants. Unfortunately, I was told I would not qualify for the devices, because I still had some hearing. My hearing loss was mostly in the high frequency range. I became depressed and frustrated. I could not understand my grandchildren or people on the phone. My hearing difficulties affected my speech. I struggled with pronouncing words correctly – especially multi-syllable words. I needed help going into stores, seeing doctors and talking with friends, It was very disturbing and humiliating.

When we moved from Minneapolis to Chicago my life changed! My new doctor said I qualified for a Cochlear Hybrid Implant. I would be his second patient and I would participate in a Cochlear study. He was so positive and understanding. I had my operation in November 2015, which went very well (but recovery was very painful). I was connected with my processor in December. I feel like I am traveling a very long journey. The doctor says it can take up to two years to heal.

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Barb’s new cochlear implant

My brain needs to re-learn how to hear, so working with the audiologist has been extremely important. There were some misunderstandings during post-activation, because I was so used to writing everything down. I needed time to process information before I could understand it. My brain is not used to hearing, processing, and understanding at the same time. It turned out to be an adjustment for the audiologist too – I kept trying to slow her down and repeat important information. 

As my brain was trying to connect with my implant, I would hear loud chirping sounds – which is normal. This is the brain’s reaction to the new range of high frequency sounds (such as a child’s squeal or a police siren) that I am now able to hear. As the audiologist programs my processor, my range of sounds have been expanding – this is done slowly. The chirping sounds are annoying, but as the brain adjusts then they begin to fade – until new sounds are introduced. The radio, tv, and other electronic devices tend to have high frequencies, which causes more chirping sounds.   

My brain is still learning to work with my implant. I do two hours of hearing homework a day – it’s exhausting. Homework includes listening to audio books and following along with the printed books. I do hearing games and exercises on my iPad and computer. My husband reads to me and I read to him. I listen to the TV, radio, etc., with captions, as I need to hear different sound sources in order to make the connection in my brain. 

Over the last six months, there has been much testing and adjusting. This past June was my six-month post-activation check-up. I received the best news. My hearing is now in the normal range (at the bottom but in the normal range) under perfect conditions. The chirping sounds had lessened, which meant my brain had successfully adjusted to the frequency range. The audiologist then expanded the frequency range enabling me to hear more sounds. 

One of the hardest adjustments has been dealing with people. I still need people to look at me, talk a little slower and clearly, so that I can hear and understand them. Loudness is an issue. While, I can adjust my devices for volume, when people talk too loudly the sounds I hear are distorted. I have thus lowered the volume of the TV – a big improvement. It is a bit easier to listen on the phone, but there are many variables: articulation, fluency, distortions, pitch, accents, and background noises. My pronunciation has greatly improved, however. I can now hear the difference in how I pronounce words and the correct way they should be pronounced.

Overall, I am glad I have the implant/processor, but it is a huge commitment and adjustment. Today I can hear birds and insects – even other people’s conversations!

Thank you, Barb!! 

Peppa Pig Saves the Day

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For weeks we struggled with Sonya’s persistent desire to remove her CIs. Nothing seemed to work. Nothing, that is, until in desperation we turned on our computer and let her watch Peppa Pig on YouTube. Sonya was immediately transfixed. Maybe it was the bright colors, the cheeky anthropomorphic animals, or the simple drawings. It might have had to do with the fact that one of Sonya’s first toys was a stuffed Peppa Pig doll. Whatever it was, Sonya wanted to hear this show. She pointed to her ears and sat still so that I could put her processors behind them.

This approach has worked 100 percent of the time. Even better is the fact that she is taking her processors off less often.

Our speech therapists have rallied behind this development. We incorporate Peppa and her family into speech therapy. Using a Melissa & Doug Wooden Doorbell House, we place a member of Peppa’s family inside each of the four doors. From there, Sonya must say “Hi Peppa Pig” or “Hi Mummy Pig,” etc.

Though I am happy we found a solution, I was initially disappointed to find that videos were the key to keeping Sonya’s processors on. I felt like in some way I had failed her. That I was taking the easy way out. I didn’t even want to admit to it on this blog. I worry that I may have opened Pandora’s Box. Perhaps Sonya will realize that I have no Plan B and will simply take her CIs off whenever she is in the mood to just zone out and watch TV.

While we are not a family that has forbidden screen time, we have tried to limit it. We allow Sonya to watch TV for about 15 minutes in the morning before breakfast and when we are driving to therapy and back. I am trying to phase out mindless videos and focus on interactive iPad games such as Daniel Tiger, Peek-a-Boo Barn, Toddler JukeBox, and My Very Hungry Caterpillar instead. I think that most everything in moderation is okay, and that some screen time that serves a purpose is okay.

But I have decided to be less harsh on myself. I’ll cross the above bridge if/when I get to it. For now, the importance of her being connected to the world of sound outweighs the potential negative side-effects. Including the fact that the theme songs to Peppa Pig seems to be burned in my brain.

On the other hand, how adorable would it be if Sonya learned to speak with a British accent?!

The Sound and the Fury

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Now a toddler, Sonya has her own opinions on whether or not she wants to hear the world.

I remember when I first took Sonya to group therapy at the Center of Hearing and Communication. All of the parents seemed to share one concern: how to keep their child’s hearing aids on their heads. It was a problem we faced as well. At the time, Sonya was only a few months old. As long as we came up with a solution, be it double sided tape, headbands or hats, Sonya would wear her hearing aids and later, CIs without complaint. I remember the frustration I felt at that time. That it would never be this hard. I was so naive then….

These days, keeping Sonya’s CIs on her head is a constant battle. Now in toddlerhood at 17 months, Sonya realizes she holds tremendous power. If she doesn’t like carrots, she can make it clear by throwing them off of her high chair, along with her CIs. If she wants milk from a bottle instead of a cup (another battle we are simultaneously fighting) she can remove her CIs until she gets her way.

This change seemed to happen overnight. A month ago, she would point to her CIs anytime the coil came off her head (leaving her without sound), to ensure that I corrected the issue promptly. She was connected to the hearing world, and she seemed to prefer it to the quiet.

Last week, however, during our gym class, Sonya decided she didn’t want to hear the world around her anymore, and she threw her CIs to the ground and had a full-on tantrum. It was (I hate to say) embarrassing, worrisome and scary for me to watch. Embarrassing because I felt like other moms may have been judging. I worry about the fact that perhaps some day, Sonya will prefer this world. And that thought is frightening. In the clip below, I am observing Sonya playing with bubbles at the end of her gym class. While I sound happy, I am feeling very discouraged. Sonya, now calm – but without sound – looks so into her own world here…

As Sonya becomes more aware of the world around her, I imagine it can be quite overwhelming at times. Perhaps the sounds of the world can feel to be too much, and since she has the ability to simply turn it off, she may choose to do so. When this happens, I feel there is little I can do. If she turns her back to me, I can’t communicate with her (Sonya reads lips, and knows a few simple baby signs). It is a powerless feeling.

I have surveyed other moms in this predicament, and their responses have been mixed. They include:

Completely ignore the behavior. When Sonya takes her CIs off, I try not to react. She seeks a reaction. However, ignoring her behavior does not get her to put them back on. Further, Sonya is inclined to try to get into mischief when not wearing the CIs. Frankly, it is impossible/dangerous to ignore a 17 month old…Perhaps it would work if she were older.

Engage the child in a way so that she wants to wear her CIs again. For example, read a book, or do an interactive game on the iPad. This sometimes works for us. If I give Sonya my iPhone and put on Masha and the Bear (her favorite show) – she will sometimes allow me to put the CIs back on. It’s not an ideal solution, since I can see this getting out of control pretty quickly.

Prevent the child from participating in an activity they enjoy until they put the CIs back on. For example, if the child doesn’t want to wear the CIs in the pool, keep her out of the pool and make her watch the other children until she agrees to put them back on. I have heard from several moms that this technique is effective. However, it is too strict for me. I don’t want to force Sonya to feel left out because she has CIs.

Praise the child when she allows you to put them back on, and do so throughout the day. It is hard to say whether this strategy is effective, but it makes me feel good – and hopefully makes Sonya feel good too. I can tell that she loves to please us. As soon as we put the CIs back on her head, we give her a hug and kiss and tell her she is doing a great job.

Within this strategy, some suggestions include:

  • Give the child a sticker or a treat every time they allow you to put the CIs back on. For us, praise itself seems to be the strongest motivator – although I realize that could change soon.
  • Praise the child indirectly, by letting them overhear you talking about them positively. I try to compliment Sonya indirectly by telling my husband what a great job Sonya is doing by wearing her CIs, while she is in the room. I can tell Sonya knows when we are talking about her.

I realize this list is short. Unfortunately, I don’t have a solution, yet. If I come across a foolproof technique, I’ll be sure to let you know.

 

 

 

 

 

Bath and Baby Works

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I am embarrassed to admit it, but it wasn’t until a couple months ago that Sonya finally began to wear her waterproof cochlear implants in the bath.

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Sonya’s first bath at one week

Since we are in and out of Ubers and speech therapy sessions almost every day, taking a nightly bath has always felt like a necessity, and a frustrating one at that. Sonya kicks and screams her way in and out of the water. On our part, the goal has always been to complete the task quickly as possible.

When I told our speech therapist that Sonya had not yet been exposed to sound in the bath, her eyes widened. “How could you not let her wear her devices?! Bath time is a critical opportunity for her to explore sound!”

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Cochlear Nucleus 6 water proof sleeves

It was the prompt I needed to get our act together. I dug through the contents of Sonya’s cochlear implant suitcases to find the water proof kit.  We placed her processors inside the water proof sleeves (a bit tricky to do actually…) inserted the coils and magnets.  We placed them on Sonya’s ears. Since the waterproof sleeves are quite large, we had to use the full-sized batteries (not the compact batteries, which fit Sonya’s small head). Sonya is back to her headbands in order to hold the very large devices in place.

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The first time she heard water, Sonya just stared blankly. Perhaps she was  stunned as she realized that water made noise. I playfully splashed her, causing her to scream in surprise.

Since then, Sonya has grown slightly more accustomed to bath time, though she still doesn’t love it. I even feel like I have to be careful about how loudly I speak in the bath, as the echo can be too much for her. I have noticed that she hates it when I dip her head in the bath water with the implants on. Perhaps it is the sound of the water that is overwhelming. Sonya does love bubbles, so I try to make sure there are plenty of bubbles in her bath water to keep her calm and interested. We do struggle with other ways of keeping her calm however.

Thankfully, friends of mine have been eager to help. My lovely friend Jane bought Sonya Tomy Do Rae Mi Dolphins. Each dolphin plays a different note when you tap them on their heads. Sonya loves them.

While I realize I need to expose Sonya to additional toys to encourage her to hear new sounds, I hesitate. Bath toys in general gross me out (these water flutes look kinda interesting, but also kinda yucky…). When Sonya was younger, we had her play with a rubber duck in the bath. The type that squirted water. A few weeks later, I realized how disgusting this toy was. Impossible to clean and never totally dry. I shudder thinking about the one time I squeezed it and brown water came out….

But I will attempt to stay open minded and to try other (sanitary!) toys that may be recommended….. Anyone? 🙂

In the meantime, hoping to make the most of bath time!

 

 

Silent Steps

The B sound continues to be difficult for Sonya. She confuses B and D, saying “dye dye” rather than “bye bye.” In fact, she uses the D sound to say most words. Pointing to my shirt she looks up at me and asks, “da?”

“That’s a button.”

“duttah Sonya says.

According to our speech therapist, such confusion is common among children with hearing loss as both D and B are high frequency sounds, and can be difficult to discriminate initially.

While Da reigns supreme, Sonya definitely knows how to use the B sound. She said banana one time at lunch. She said buh buh for bubbles on numerous occasions. She refers to Yan’s mom as Baba, and turns toward our computer screen to look for her, as we typically FaceTime once a week with her.

While it is clear that Sonya’s understanding of words continues to grow, I have noticed that she seems quieter lately. At therapy this week, she made few sounds. She would point at the toys she wished to play with, rather than vocalize her want. She would grunt or whine when she didn’t get her way. It is discouraging to see this after several weeks of clear growth.

While she makes fewer sounds, she moves with greater ease and loves to dance!

In fact, Sonya’s physical development may be the underlying factor. Sonya is now actively cruising. It started a couple weeks ago during an in-home therapy session. We were sitting on the floor of the nursery as usual, when our speech therapist asked if Sonya had started walking around our apartment by holding on to furniture yet. While Sonya had pulled herself to stand weeks ago, she hesitated to move further. While every baby moves at their own speed, Sonya may also have been reading into my own fears about her moving around our apartment. I flinch every time she loses her balance. I grab her just before she falls (although she still manages to sport some bruises on her forehead from crawling too quickly on slick wooden floors). Our speech therapist showed us ways to help Sonya learn to cruise in a safe environment, between the couch and coffee tables in her nursery. Now Sonya crawls up to that area and pulls herself up, then steps from couch to table. Her face beams with pride.

As her brain focuses on perfecting this new milestone, it is not that surprising that her speech development will be placed on the back burner momentarily.

In the meantime, I will try to enjoy this moment of quiet focus.

My Daughter the Cochlear Cyborg….?

Sonya was recently referred to as a “cute little cyborg.” Yan, who considers Star Trek: The Next Generation “a documentary,” absolutely welcomed the moniker. And why not…. I mean, the fact is, she is a cyborg. According to Oxford, because of her cochlear implants, Sonya’s abilities “are extended beyond normal human limitations by mechanical elements built into the body.”

CI T-Shirt
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And I can see why people who wear cochlear implants may embrace the term cyborg to identify themselves. When Sonya was diagnosed with hearing loss, my brother sent me an article written by Michael Chorost, who proudly refers to himself as a “Cochlear Cyborg.” Born with profound hearing loss that grew worse over time, Michael chronicled his relentless pursuit to make himself hear a rendition of the famous musical piece “Bolero” by Ravel, through cochlear implant mappings and upgrades. The last sentence of his article was particularly moving to me: “My hearing is no longer limited by the physical circumstances of my body,” he writes. “While my friends’ ears will inevitably decline with age, mine will only get better.”

But the term cyborg still bothers me. I don’t want Sonya’s identity to be defined by the fact that she wears cochlear implants. It was one of my greatest fears when I learned she was deaf — that she wouldn’t feel part of our society. And it’s why Yan and I chose to pursue auditory/verbal therapy for Sonya, rather than sign language.

While it seemed like an obvious goal for us that we would want Sonya to learn to listen and speak and be part of our society, interestingly, a number of other parents we have met through speech therapy are heading in a different direction for their children. One mom I met, who now has a two-year-old with cochlear implants, refers to her child as “a deaf person who can hear.” After much work (and becoming immersed in ASL herself) her child is now fluent in English, American Sign Language as well as a couple other languages (clearly a very intelligent child!)

I certainly respect and see the wisdom behind such a decision. At night, when Sonya is not wearing her implants, I often wonder how we will communicate with her when she is older – when she has a nightmare or needs something. Sign language would certainly be useful in such a situation.

But I still believe we should focus on English first – as learning sign might interfere with Sonya’s ability to learn oral language (as children who are deaf may rely on sign if it is a tool at their disposal, as it is easier for them).

Ultimately, Sonya will be the one to determine how she chooses to identify herself – be it cyborg or whatever. And I suppose I just have to accept this. Sonya was born deaf. She may in fact in the future decide to learn ASL and join the deaf community. But for the time being, while I have some sway, I will do everything in my power to ensure that she has the opportunities available to her in our society first and foremost.

Have Baby (with CIs) Must Travel (with CIs)

When I notified friends and family that we were planning a trip to the Amalfi Coast this summer, several people voiced their concerns. “A vacation is not a vacation with a baby – it’s just a trip,” one friend told me. “You aren’t going to sleep because the baby won’t get used to the time difference. Above all – you won’t be able to enjoy your vacation!” Another friend told me that we should not go this year because of Sonya’s surgery. “She could get an ear infection,” she warned “And then you would be in a foreign country with a foreign hospital and foreign doctors!” These concerns had an impact on me. Rather than feel excited about our trip, I increasingly felt anxious.

Prior to leaving, I consulted with our team of speech therapists, audiologists and surgeons. The overall consensus was that we should ABSOLUTELY travel with Sonya. “You need to take time for yourselves and enjoy being a family,” our EI service coordinator wisely told me.

For two and-a-half weeks, we toured Amalfi, Capri and Positano, Italy. It was not an easy trip (especially given that most of these towns were not stroller friendly) – however – it was one of the BEST trips I have ever been on and I know I will cherish the memories we made for the rest of my life.  That said, traveling with a baby is difficult. Traveling with a baby who has cochlear implants (I think) is even more challenging – so here is a list of tips that I hope others in our situation will find helpful!

Forget the stroller – bring a baby carrier instead: Note – this tip is particular to the Southern coast of Italy where the streets are typically paved with cobblestone and cities are built into the hills with hundreds of stairs. The stroller was most helpful in the airport – but aside from that time, we didn’t really need it at all and it collected dust in our hotel room. We used the Ergo Original Baby Carrier – which was comfortable and very easy to use.

We also decided NOT to bring a baby backpack. Lots of people recommended we do so – and we even borrowed one from a friend before our trip. We finally decided against it since we were bringing so much stuff already. We didn’t miss it.

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Enjoying the view in Positano, Italy

Get on a schedule as soon as you can (but be flexible): This proved critical for acclimating to the time change. Our schedule revolved around three nap times (one mid morning, one early afternoon and one before dinner). We also kept Sonya from sleeping more than two hours per nap, to help her get used to the time change. It only took two days for her to adjust.

Of course it wasn’t possible to be strict about the schedule either. A few nights, we kept Sonya out  so that we could enjoy dinner with family. It made me nervous to do this, but we allowed her to sleep in the next day – and I didn’t notice much of an issue in terms of her happiness when we did this occasionally.

Bring extra batteries (battery powered and rechargeable) for CIs: We brought two extra pairs of CI batteries that were rechargeable and two extra pair of batteries that were battery operated, to ensure that we wouldn’t need to disrupt Sonya’s ability to hear. I suggest packing batteries in at least two different containers just in case one gets lost.

Bring the waterproof kit/waterproof box for processors/coils: Every day we spent several hours at the pool or beach or on a boat. We (dumbly) decided not to bring the waterproof kit. I wish we had. That said, It is also a good idea to bring the waterproof storage box regardless just in case.

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Embrace cultural differences: Italians are the warmest people. They also LOVE babies. It seemed like every Italian we passed would look at Sonya and call out “bellissimo!” “principessa!”  or “bombola!” Many would go so far as to pinch her cheeks or hold her hand. At first I grimaced when this happened. But, eventually just accepted the fact that strangers were touching Sonya – and it was okay. Once I embraced this difference, I realized how lovely the Italian culture really is. So warm and affectionate! We Americans can be so cold sometimes…

Sonya and Sergio - a Porter at the hotel we stayed at in Amalfi
Sonya and Sergio – a Porter at the hotel we stayed at in Amalfi

Integrate speech therapy games into your vacation: One game that worked especially well was the “go go” game. In the pool, I would hold Sonya while Yan was a few yards away. Yan would repeat Sonya’s name until she turned herself to look at him (helping her to recognize her name). Once she saw her dad, Yan and I would both say “go! go! go!” as I gently bopped her in the water towards him. Then we repeated with Yan holding Sonya and me saying her name.

Now that Sonya can crawl, another game we played involved placing two different farm animals within crawling distance of Sonya. I would ask her, “which one says moo?” Sonya then would crawl (sometimes!) towards the cow. Sonya’s Ba Baba Lillian bought us these awesome farm animals, which double as pool toys. She loved them.

Bring your parents – if you can!: I would be remiss not to add that we did have Yan’s parents and sister at a hotel nearby. They were the most wonderful support while in Europe, and even watched Sonya a few nights so Yan and I could get some time away or visit places that were just not kid-friendly (e.g. Pompei). I think Sonya especially enjoyed having them there so that she could get that additional time to bond. A win-win!!

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Sonya and me with her Deda Eugene and Baba Lillian in Maiori, Italy

On Progress, Acceptance and Holland

Over the past few weeks, Sonya has made leaps in terms of her development. It seems like just yesterday she was a tiny bundle. Today, she officially started to crawl! I know our life is about to change drastically, but it is so exciting to see her make such great progress.

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Sonya at one week
Sonya last week as a flower girl at her Aunt Mariana's wedding
Sonya last week as a flower girl at her Aunt Mariana’s wedding – such a big girl!!

On the language front, Sonya is hearing and responding to sound much differently than just a few weeks ago. While in the beginning we were struggling to get her to simply notice/hear a loud sound, she has lately been emulating the sounds we make. This morning, for example, as I offered her some eggs, Sonya responded with “aye” the first sound in the word! Like many babies her age, she has started to do simple hand gestures like lifting her arms when she wants me to pick her up, but on occasion I have heard her say “uh!” for “up!” Interestingly, Sonya refuses to go to sleep unless she is wearing her implants. I carefully remove them as soon as she is in a deep sleep. She must be feeling very connected to the hearing world.

The Center for Hearing and Communication recently posted a terrific video where you can watch a brief moment from one of Sonya’s speech therapy sessions. Note – this took place several weeks ago – and I can already see the progress that has been made since that time – but it does give you a sense of the type of work we are doing with her amazing team of speech pathologists:

These days, I am feeling much better in general about Sonya’s well being. The implants themselves – which initially were difficult for me to see her with – have become such a part of Sonya that I don’t notice them at all. And when I do, I think they look rather cute. It brings to mind a poem that was sent to me by Shayna De Lowe, our cantor at Congregation Rodeph Sholom – and the mother of a son who also has bilateral cochlear implants. Cantor De Lowe has been an amazing support to me and my family. She also has an excellent blog focusing on her family’s experience here.

Prior to Sonya’s surgery, Cantor De Lowe sent me the below poem, which I love and re-read when needed.

Welcome to Holland … by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.