Lilya, a little girl wearing a yellow shirt and smiling.

4 Stories From Mothers Adopting Children With Disabilities

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The 14th of May is Mother’s Day in the U.S. — a day to celebrate being a mother or celebrate your mother. There are many for whom it is a bittersweet day to remember a mother who is no longer with you. No matter what your circumstances, it is a day to think about motherhood.

There are children in places around the world who don’t have a mother. Children born with a disability in third world countries, in places like Eastern Europe and Asia, are often discarded into orphanages. They aren’t given the chance to know what it feels like to be held and loved and picked up when hungry or in pain. It is these precious children that Reece’s Rainbow serves.

We find families for children who otherwise would spend the rest of their lives languishing in orphanages and institutions. We have worked for going on 11 years to find mothers and fathers for these precious children who were blessed enough to be born! More than 1760+ are home with their mothers right now.

In honor of Mother’s Day I am sharing the stories from four of our Mothers. Each one is at a different stage in this process of adoption and becoming a mother of a child in need of one.

Marabeth DiAntonio

A mother of a child with Down syndrome tells her story of how she learned of Reece’s Rainbow and what led her family to the choice of adopting another child with a disability.

The first time I ever met someone with Down syndrome was the day my son with Down syndrome was born. Michael was my second biological child, born just 10 months after our wedding, when we had become a new blended family of seven. His five older siblings, ranging from 8 to 21 years old at the time adored him and he brought us closer together as a family.

Marabeth's son Michael.
Marabeth’s son Michael.

When I was pregnant with Michael and I told people in my local church family that my child was going to have Down syndrome, I kept getting the same response. People would tell me about another family who attended our church who had four… or five… or six… kids with Down syndrome. (I think they had all lost count.) In my naiveté I would think “What causes that?” and start worrying about the probability of all my future kids also having Down syndrome.

Of course, I soon figured out they had gained their chromosomally enhanced children through the miracle of adoption. But I was a little confused as to why anyone would choose to adopt children with Down syndrome. I mean, I was OK with having one child with Down syndrome since that is what I was given, but I didn’t think it would be something I would ever choose. (Please remember that I had still never met anyone who had Down syndrome.) Also my thoughts surrounding adoption were pretty much limited to it being something people did only after dealing with infertility. The reality of the orphan crisis, or institutionalized children were never on my radar.

After Michael was born I still didn’t know anyone else who had a child with Down syndrome. So when this adoptive mom from my church showed up on my “suggested friends” list I contacted her. Her kids were adorable and it turned out that they were in process to adopt another beautiful little girl with an extra chromosome from Bulgaria. Of course she was sharing a lot about the adoption, which led to me reading a lot about international special needs adoption in general. My eyes opened wide. It is hard to explain but I went from being completely clueless to feeling completely broken-hearted about the struggles of institutionalized children.

When I was watching my son do physical therapy, I would think about kids in cribs with no one who cared if they learned to walk. When my kids cried for me to come rock them at night, I thought about the kids who had no one to come and rock them if they cried. I would stay up late spending hours looking at pictures of kids on Reece’s Rainbow, crying my eyes out.

And then I took all that and put it in a box. I stopped reading the articles and looking at the waiting children. Because we couldn’t adopt, not then; maybe not ever. I wish I could say that in the waiting I spent my time advocating for orphans, or raising money for orphans, or committing myself to serious intercessory prayer for orphans, but that would not be true. I wish I could say I was OK with letting my heart be broken even when I didn’t have an action plan to go along with it, but that would not be true either. I felt powerless and inadequate and wondered why I felt this burden to begin with.

Psalm 37:4 says “Delight yourself in the LORD, and he will give you the desires of your heart.” I believe the reason he gives us the desires of our heart is that he is the one who gives us those desires in the first place. He places burdens on us so we will be spurred to the “good works, which God prepared in advance for us to do”. (Ephesian 2:10).

Waiting for our sister.

Of course I believe God follows an entirely perfect timeline in comparison to my short-sightedness and impatience. On January 24, 2017 we found out we were officially committed to adopt a little girl with Down syndrome from Eastern Europe. In the waiting we have grown, both as a family and individually, in ways that I believe will help us immensely on the journey to becoming adoptive parents. And I will never wonder again why someone would choose to have a child with Down syndrome. We are so lucky and grateful to soon be the parents of two.

Michelle Zoromski

Michelle began as one of our Reece’s Rainbow families, but has become our Grants & Operations Manager and then in March when our Founder/ED retired has now taken on the Executive Director role! She and her husband Brian adopted Lilya in 2010. One of their other five children, daughter Ruby, was born with Down syndrome which is what led them to Reece’s Rainbow.

Once we started the process, in our hearts, Lilya was ours. We had to temper our expectations – we knew it wasn’t official until we met her and accepted her referral in country. But to us, she was one of our own, and we would do everything we could to bring her home to us.

For me, the process mirrored my pregnancies with my other children. The waiting, the expectations, the dreams for the future… and right from the start, from our initial commitment, unconditional love.

Lilya, a little girl wearing a yellow shirt and smiling.
Lilya.

When the paperwork was completed and we were waiting for the next step – the steps that were out of our control – that wait seemed endless.  One of the greatest gifts we received during that endless wait was a short video.  It was a brief video, only a couple minutes, and there was the shortest snippet of Lilya. This tiny view of a little girl – she was not the subject of the video, but she was the center of the universe for us. I watched that video more times than I could count – the little girl with the crooked bangs was no longer a photo, an image — she was a real life, walking, wheezing, tiny girl.

Lilya with her mom.
Lilya with her mom.

Even now, almost 7 years ago, I remember the smallest details of the process. We were halfway around the world from our children at home to bring another child into our family.  To us, she was ours, just as much as our other children. Driving around the capital of a foreign country, with the referral paperwork in hand… sitting and waiting in the office of the orphanage director… and in enters this tiny girl who had no idea how her life would be changing.

Lilya with her arms wide open.
Lilya with her arms wide open.

Visiting Lilya at the orphanage was such a unique experience, a moment in time unlike any other. We would go play with her, and she soaked in the attention of these two new adults with the funny language. And much as my memories of my children being born are etched in my memory – I will never forget the days of walking up to the orphanage and a tiny blond girl running out to meet us with her arms wide open.

Crystal Kupper

Crystal is a Reece’s Rainbow adoptive mom but also a professional writer. I’ve included the link to her contributor bio here on The Mighty! She is sharing about their adopted daughter, Guyana who is already home.

Guyana at the beach.
Guyana at the beach.

I set her down in the sand, watching for a reaction. Her Hershey-brown eyes, already nickel-sized, grow even bigger, and her hands by her sides freeze. The newness of ancient rock and shell and bone bits touching her skin would have overwhelmed Guyana a year ago. Though she’s still unsure now, she trustingly glances up for reassurance, to make sure she’s still safe. “What is this place?” she asks, dramatically gesturing toward the water.

That’s what used to separate us, I think. But I tell her it’s the ocean. Guyana takes it all in, nothing in her five years of Armenian orphanage life preparing her for the sight of the Atlantic. Her daddy scoops her up, her 24 pounds nestled safely in his strong arms. And together they step into the waves. Soon, after a brief moment of panic, she is floating on her back in wonder, her paralyzed legs held up in total trust by someone who crossed the world for her.

In the ocean. Watching them, I realize I feel unsure at times like Guyana does now.Last Mother’s Day, I flew eastward to become a mother for the fourth time. Since our newest little birdie came home, her smile, giggle and extraordinary spirit have kept us all flying high. But I have had brief moments of panic, too. I’ve touched newness — unpronounceable diagnoses, bureaucratic hospitals, insurance nightmares, public ignorance — that nothing in my 32 years prepared me for. At times, I have felt overwhelmed. “What is this place?” I ask dramatically.I glance upward for reassurance, to make sure I’m still safe. And inevitably, someone scoops me up and swims for me, and I’m safe in the arms of a community and family who see not only my girl’s worth, but mine, too.And together, we keep stepping into the waves, floating in total wonder.

Monica Eide

Monica is a mother from Norway and a very faithful Reece’s Rainbow warrior! She and her daughter are an invaluable help with the RR twitter & Instagram! She is introducing one of our waiting children. This is a child we have on our website in need of a mother.

This is Lucas. He lives in an orphanage in eastern Europe but what he really needs is a forever family, a mom.  There are so many children in the orphanage and but very few nannies.

Lucas is seeking an adoptive family.
Lucas is seeking an adoptive family.

Lucas doesn’t speak much but he knows how to ask for food, because he is always hungry. He used to cry a lot, felt lonely and hopeless, but the nannies may now be giving him medicine to sedate him.

He will soon be transferred to a mental institution for adults, and there he will be left in bed all day, because there are fewer grownups there.

The good news is that Lucas can still be adopted, though the odds are stacked against him.

Lucas has cerebral palsy that affects all of his limbs. That means he will need therapies and medical care. The good thing with CP is that it won’t get worse. It is what it is, and his condition can improve with the right therapies. Where he is now, he doesn’t get any therapies at all.

He was born in 2008 which means he is no longer a sweet, squishy baby. He’ll be 9 this year and parents looking to adopt usually want babies as young as possible. Lucas wasn’t made available for adoption until he was older, so he lost that chance.

As well, Lucas is a boy. Did you know that for every boy adopted, two girls get adopted? A lot of boys sit and wait like he does. He is such a quiet and sweet boy.

For Mother’s Day I know Lucas wishes for a new Mama. He can bring so much joy. He loves to smile, and loves music. He dreams of smiling and laughing, even singing with a forever family!

Please visit his profile on Reece’s Rainbow to see more photos of him, learn more about him or inquire into adopting him!

We would like to wish all mothers, every kind of mother, a very Happy Mother’s Day! If you would like to learn more about how to adopt a child through Reece’s Rainbow, please visit our website. We help families raise the money they need to offset the expenses of international adoption. We also have many ways you can change the course of a child’s life forever, even if you aren’t in a position to adopt. We have both a child and family warrior program if you want to focus on one child or family. As well, one of the easiest ways to help our children find their forever families is simply sharing their need on social media. You never know if that child’s soon-to-be mother will be reading your post!

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Little boy sleeping in hospital bed, his image is blurry, in focus and forefront is an infusion pump

I'm Not Strong, My Son Is

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“I don’t know how you do it, I wouldn’t be that strong,” a close friend said to me during a recent conversation.

I have heard this sentiment over and over again for the past seven months. My 4-year-old son has been hospitalized since September 2016, coming home briefly in March before going back to the local Children’s Hospital with yet another central-line infection. For seven months we have lived a disrupted life. Time split between two children. Days divided between home and the hospital. My husband and I have become ships passing in the night.

As well intended as the people are who compliment my strength, I can’t help but feel they are wrong. They could never understand how inaccurate it is to assume I’m strong. I’m not nearly the picture of strength I portray. But as a parent, there is no other choice than to stand beside your child. So I do. There is no other option than to fight alongside them. So I always will. The unconditional love of a parent for their child will allow you to find a strength you never knew existed but it pales in comparison to the strength residing within your child.

My son is the fighter in the family, the one whose strength and courage during this journey has never wavered. As his mother, I would love to say I have remained strong in my faith, in standing beside him, in fighting for him, but I haven’t. On more than one occasion I have broken down, pleading to a higher power for reprieve. But not my son. He has fought hard and continues to do so every single day.

My son is the one who has undergone countless medical procedures and interventions. The last half year is marked by surgeries, line placements, EKG’s, EEG’s and GI tests. Yet he never complains, taking each in stride and with unparalleled grace for his age. He lies still, smiling at the camera for X-rays and GI tests. He doesn’t play with the EKG or EEG wires, focusing instead in his favorite train, Thomas. He rarely cries or fights when coming out of anesthesia, though on occasion he will call for his momma.

My son is the one who has spent the last seven months living in a hospital. Every major holiday, and his birthday, has been spent within the hospital walls. He has been away from everything he loves since September: toys, his sister, the beloved family dog. He could be miserable and crying for home but he isn’t. Instead, he has adjusted to his living arrangement, greeting me with a smile every single morning when I arrive. Does he miss home? Of course, “I come home tomorrow, when I’m better” he says. But that’s it. He never begs to leave or for me to take him with me when I head out the door.  Heartbreaking as it, he simply kisses me, tells me he loves me, and says, “I’ll see you tomorrow Mommy.”

My son is the one who has fought big battles raging inside his little body. He is the one who has overcome multiple infections. Infections that have threatened his life. He has battled against the 104° fevers that signal the frightening and reoccurring line infections. He is the one who had undergone countless courses of antibiotics, which upset his entire digestive system as they fight the bacteria in his bloodstream. He is the one who required only one day on the PICU after major abdominal surgery. He is the fighter, the champion who continues to bounce back after his setbacks.

My son is the one who hasn’t had anything to eat by mouth in seven months, and nothing to drink in three. He receives all his nutrition through Total Parental Nutrition (TPN) and supplemental g-tube feeds. Yet he doesn’t complain or cry for food. While we try not to eat around him, on the rare occasions we do, he doesn’t become angry. He doesn’t beg, asking for bites of our food. He simply asks, “Can I have noodles when I’m better?” accepting our “someday” response. Somehow he understands he can’t just yet, and accepts it.

The truth is I’m not the strong one. My 4-year-old son is. And if I’m lucky, some of Michael’s strength will wear off on me, so that I may continue to be the mother and advocate he deserves.

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Thinkstock photo by kdshutterman

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What's Inside the 'Boxes' of Inclusive Education

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There’s a really cool graphic that’s popular in education circles. It’s particularly popular in inclusive education circles. It’s meant to demonstrate that different kids require different types and amounts of support in order to succeed in school (and in life… but let’s keep the focus on school, for the moment). There are different versions of it, but here’s the one I’m most familiar with:

Equality vs. Equity image of children standing on boxes to watch a baseball game..


I’ve seen this graphic many, many times, but I always have the same reaction. I see three kids who have the same goal. Let’s watch a baseball game together! The only problem is that in the picture on the left, the two big guys are busy enjoying the game… while the only thing the little kid can see is fence. In the graphic on the right, the kids have figured out how to solve the problem. We have enough boxes. All we need to do is transfer a box from the big guy to the little guy. Now we can all see. Look at that… the Red Sox just scored a home run!

However, I’ve learned through painful experience that not everyone sees this graphic the same way I do.  Some people look at the graphic and experience a sense of loss. Why does the big guy have to give up his box?  True, the big guy can already see over the fence without the box… but aren’t we holding him back by taking the box away? Couldn’t we push his development by giving him some more boxes?

I think our society perpetuates a scarcity mentality. What’s in those boxes? How do I get one for my kid? I also think our society elevates individualism over community. Who cares about that little guy, as long as my kid can see the game? We can see this play out in so many aspects of our day-to-day lives.

Let me tell you a bit about what’s inside my kid’s boxes.  Our first boxes were delivered when G was just 9 months old. He wasn’t meeting his physical benchmarks, so he started working with a physical therapist. We added speech therapy and occupational therapy when he was two.  Later, we added behavioral therapy and a play skills group. Did I mention we received all these boxes before he was even 3 years old?

I worried about my son’s future and feared he would miss out on opportunities other kids his age had. But after three years with a behavioral therapist, we finally made the decision that G had made enough progress to “graduate.” While he still needs many other supports, he had acquired the specific set of skills she had to offer. He no longer needed one of those boxes.

Back to the graphic…  I think it’s a natural reaction to want the best for your kid. And maybe when you see that someone else’s kid got two boxes, while your kid has none, it might raise some questions about the boxes. What I’m asking is to please, please….  think for a moment about what might be inside those boxes.

Those boxes represent ramps that make buildings disability accessible. Those boxes represent assisted listening devices for kids who can’t hear. Those boxes represent hours of phonics instruction for kids who can’t hear the difference in the sound of a “p” versus the sound of a “d.”  Those boxes represent aides who can support students in overcoming the obstacles they face due to autism, ADHD, anxiety, or many other medical conditions or disabilities. Those boxes represent whatever a kid needs so they can see the ballgame instead of the fence.

So again, I ask you… let’s keep our focus on our goals as a school community. Heck, let’s keep our focus on our goals as a society. At the end of the day, it’s not about how many boxes you have. It’s about working together to make sure everybody can see the game.

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My Transformation as a Mother of a Child With Complex Needs

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“I like your tail,” our 2 1/2- year- old croons in my ear as she lovingly flips my ponytail around behind my head.

Tail talk is frequent at our house these days, since Ava is obsessed with horses. With a mass of short, dark, curly hair, Ava’s ponytail is more like a fluffy bunny tail. That doesn’t matter to her. Her imagination has firmly placed a tail on her rear end, which she happily wiggles as she gallops and whinnies around the room, “See my tail?” she laughs with joy.

“I see your tail,” I always echo back, believing Ava can sense my reciprocal joy as I giggle along with her. What she can’t sense, though, is that when she aimlessly plays with my hair, bestowing her finest toddler compliments on it, there’s a lump in my throat. To her, that’s just a cute little ponytail that mommy is sporting. To me, it’s a symbol of how far I have come.

When I gave birth to our second daughter, Ava, in 2014, I had long, dark hair. I envisioned she would love to run her hands through it as I nursed her, much like her older sister did.

But Ava was born with a common airway defect, laryngomalacia, that prevented her from nursing. It also made drinking a bottle a laborious and often a painful experience as she vomited up the breast milk (and later formula as we battled a milk protein intolerance) that we worked so hard to get into her.

I didn’t envision her having two surgeries before she was 4 months old; or that she would develop a complication after the second surgery that would keep her hospitalized for nearly a month. Her first Christmas and New Year’s Eve were not marked by festivities, but by multiple tests, painful procedures and the placement of an NG feeding tube while her body tried to recover and heal.

That hospital and all that happened inside of its four walls changed me.

Night after sleepless night, I shivered on the hard, blue bench by the drafty window of Ava’s hospital room, trying to squeeze in a few minutes of sleep before the next vitals-check woke her. I not only contemplated our daughter’s life, but I contemplated mine.

At 37 years of age, I thought I had a pretty firm grasp on who I was. However, there in that hospital, I was suddenly no longer the woman, the wife, the mother I had been or the one I recognized. My heart could never unfeel the pain and uncertainty that it had felt; my eyes could never unsee the pain my baby had gone through; my ears could never unhear her cries or the cries of the other children who surrounded us.

I didn’t look at myself much during that hospital stay, but when I glanced in the mirror quickly each morning to throw on a little makeup and pull my hair into a ponytail, I struggled with who I saw.

I had entered the hospital as a mother whose child was having a surgery that was supposed to alleviate the problems she had been experiencing. Yes, I was frightened, but I naively never considered the surgery would lead us down a path of continued issues. Now, suddenly, I was the mother of a child with complex medical issues that the doctors were trying to fully understand.

Although I was proud of that woman I saw staring back at me, for her strength and perseverance, I still needed to fully embrace her. While I had been permanently transformed on the inside, my transformation was not yet visible on the outside — until I chopped off my long, thick, black hair into a short pixie.

“New Year, new ‘do!” I remember posting on Facebook a couple of weeks after Ava was discharged from the hospital on New Year’s Day. Very few people knew of the struggles we had gone through with Ava over the previous month or even the months proceeding it, so I’m sure most people simply chalked my bold haircut to my unique personal style. Little did they know it was the final piece of my transformation.

I know many women cut their hair after a great loss or change. I cut my hair along with the last of the woman who had entered the hospital that cold December day preparing for her daughter’s surgery. She was gone. A new woman — a little battered and broken, but stronger, bolder and wiser — had emerged.

I wore that stylish little pixie cut of mine like a badge of honor through the early years of Ava’s life — years marked by incredible growth and achievement on her part. She transitioned out of therapies, weaned from her feeding tube, caught up on her milestones.

As Ava continued to grow in health and strength, I began to consider that maybe, just maybe, I could be a mother of a child with complex medical needs, while still remembering the woman who gave birth that hot, summer day in 2014, full of excitement about the baby girl she was hoping would find comfort in the warmth of her mother’s long hair.

So here I am now, many months later, sporting my little ponytail as Ava twirls it around with love. No, she may not have fondly buried herself in my hair as a baby, but she gleefully plays with and messes up my hair now as a toddler. And these moments are powerful to me.

To the average passerby, I know I look just like any other mother. To my daughter, however, I’m this exciting new creature. A mommy who has a tail. And to me, I’m the woman who is whole.

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 Thinkstock banner photo by: ivary
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How My Life as a Mother Has Been 'Rerouted'

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Rerouting isn’t always a bad thing.

I was excited to get my iPhone years ago, partially because of the navigation. I’m awful at directions, and tend to think I know better than the person who gave them to me. I’m almost never right about this. So when I started displaying the same behavior in response to my phone’s navigation, that annoying voice kept telling me it was “rerouting.” Again and again it would say that to me, never learning this is just what I do — and while I don’t take the expected paths, I usually, eventually, get there. Sometimes I find something unique along the way I would have missed. I wish my navigation voice (I named her Camille) would tell me she was “rerouting” in a more hopeful voice. While I’ve changed which navigation app I use, and now Camille is programmed with a British male voice, it still tells me when I’m not following directions. I just laugh.

The other day when I was growing impatient with the necessary changes in our lives due to my daughter’s diagnosis, I heard that voice tell me we were “rerouting.” I can’t say I had a complete moment of Zen, where all of life’s lessons were illuminated, but it did make me relax and forget about the stress. For a little while.

When I was younger, my plan was to marry someone lovely, move to Ohio, be a nurse, have four kids, two dogs and a beautiful, charmed life. None of my children were going to have medical issues, I would not experience divorce and of course my dogs were going to be perfectly behaved. There’s been some rerouting since then.

My daughter’s diagnosis — when I was 19 weeks pregnant — changed that. There were many stops along the way that changed it, but this was certainly a big one. It didn’t feel like a traffic back-up or lane closure, it felt like a major intersection inexplicably vanished and there was nowhere to go. I could stop there, along the path, and flounder. Or I could find a new way to get there — whatever there ended up being.

Along the way I’ve ended up in Ohio, after all, because it had the hospital my daughter needed. I am not a nurse in the typical sense, but I can talk medications and equipment and diagnoses and neurological symptoms with the best of them. I have five amazing children, four dogs, and a beautiful, chaotic life. One divorce, one dog who flunked out of being a service dog, and a few other hiccups seeped in as well. Just a little different path, but I got there.

My rerouting has reminded me to celebrate every milestone, even if it only seems like an inch. I’ve stopped at roadside diners that include medical formula, feeding tubes and way too much coffee. Souvenirs along the way include swag from lots of hospitals, charity walks, non-profit organizations and quality medical-goods stores. I can tell you how to find the best formulary pharmacy in several states. I can talk to an out-of-town emergency department nurse about a key piece of medical equipment when I’ve traveled 12 hours for my daughter’s cheerleading competition.

It takes longer to take these other roads, and sometimes it results in frustration when you’ve typed in the wrong address and end up in the completely wrong spot. But there’s usually something to remember along the way that’s unique to my family, my child and my own life. If you’ve found yourself unexplainably rerouting, try to enjoy the amazing views you’ll see if you give yourself room to notice them.

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Thinkstock photo by: oatawa

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The Importance of Pets for Our Medically Complex Family

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One of the best memories I have of my son Peter’s early years is the sight of our dog’s eager face greeting us at the door every time we came home from a surgery or extended stay at the hospital. It is always a relief to get home and finally be able to relax, but to have such an excited friend waiting for your return makes it that much more endearing.

Having a dog in the house when Peter was a baby helped me as well. We were nearly homebound for Peter’s first couple of years due to the fragility of his health. With my husband traveling for work, Divot was my constant and sometimes only companion.

Peter always says that Divot was his very first friend, and I would have to agree. When at home, those two were inseparable! Our dogs have always been part of our family traditions, celebrations and milestones. They have witnessed our boys’ first steps, first days of school, birthday parties, and family holidays. They have also shared in our grief during family tragedies and our stress and worry over surgeries and hospital stays. Our dogs have given us endless entertainment and comfort over the years. They are always faithful and eager to please.

Peter is especially fond of dogs. One of the first signs he learned as a toddler was for “doggie,” and he used to do the sign for it when he was in the hospital. We have at least two white stuffed dogs that were gifts because people heard he was missing Divot. Peter loved stories about dogs when he was little, and he had a collection of nearly every dog breed of Webkinz stuffed animals! There was even one named “Children’s” that he received when the tooth fairy visited the hospital after a surgery.

I want my boys to always enjoy the friendship of a pet as they grow up and face the challenges that can come with adolescence. Having a pet can give a child a friend who loves them unconditionally, a friend who silently listens to all of their troubles, and a friend who cuddles next to them when they are sick.

Collage of the author's two sons holding dogs, with photos of one of the author's sons at younger ages next to the family dog

Follow this journey on Pete’s Diary.

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