Connecting Families
Melissa
I am the proud mother of Dillon. All of my life, I have dreamed of becoming a mother and when I learned that I was pregnant for Dillon, I wanted to do everything possible to take the best care of my unborn child. I had no idea how my life was about to change!
Right away, I called my physician’s and did what I had to do. On my 3rd month check up, I didn’t realize that I had “a choice” in taking the AFP blood test…it was just kind of given to me & I just said, ok…gotta do what I have to do. Well, low and behold as I am cleaning up after dinner I get a call from my OB/GYN telling me…Melissa, well, this could very well be a “false positive” but your test came back stating that your child has a 1/14 chance of having Down Syndrome. Right away, I didn’t think anything of it, I just gave it all to God & trusted that what was meant to be was going to be. I felt like my unborn child was a gift given to me and I wasn’t going to give up no matter how it was!! I didn’t know much about Down Syndrome, didn’t know anyone who had it, but it was something that I had to learn more about.
I had to go for my level 2 ultrasound a couple of weeks after. Everything was going great except for the fact that I wanted a girl so desperately and the 1st ultrasound showed that it was a boy. So, I was excited since I just wanted to know for sure if it was in fact a boy. So, here Paul & I are at the Level 2 appt. The tech. kept on concentrating over at the screen & she wasn’t looking where I wanted her to? As Paul & I started to hold onto each other’s hands tighter & tighter…she pauses & says, I’m sorry, Please wait here while I get the doctor. My heart just dropped…Please Lord, please let our baby be ok…please!!! The MD comes in and was examining the babies heart…over & over. What’s going on?, please tell me what is going on?? I finally said after waiting FOREVER it had felt like. I’m sorry, your baby has a big whole in his heart. Then he went on to say how he had a very little chance of survival, what the risks were, what was going to happen to him & with the fact that the baby also had a chance of having Down Syndrome..well, maybe we should think of terminating the pregnancy. I pretty much don’t remember anything after that. I just remember losing it & Paul having to almost carry me to the car!
Months went by and we had decided on naming the baby Dillon. We were so scared to lose him. I had such a stressful pregnancy worrying with the unknown!! I was so frustrated that my OB/GYN nor the Genetics counselor couldn’t refer me to someone who had been in my shoes. I felt pressured to have an amnio test done, but refused to risk my baby’s life even more! I didn’t know anyone who had a child with Down Syndrome, and I was just so desperate for some sort of support. I was so pissed off with HIPPA, why couldn’t I talk or meet someone who knows what I’m going through? I just felt so lost & scared. I held on to my faith, tried to be encouraged by others, but, like, they didn’t have a clue as to what I was going through! I remember searching online looking for information & wanting to see pictures of kids that had DS. I really went back & forth with my emotions day to day.
Then came the day when we met Cardiologist Dr. Lapuk at CCMC. That day he gave me the hope that I had been praying for! He CLEARLY explained to us what an AV Canal Heart Defect was and prepared us for how his open heart surgery was going to be. The risks, benefits and so forth. We knew that once Dillon was born, depending on his health, they may have to operate on him right away or if he was stable, then they would hold off until Dillon had put on some more weight and was about 2 months old. Dr.Lapuk was so wonderful and on that day is when I knew that Dillon was going to make it. DS or not, who cared about that part!!
My last month came & the stress tests became more and more frequent. I had so many complications, Dillon’s heart rate continued to drop, his activity was inconsistent and I started to lose my fluid. So, on July 24th I had to be transferred and sure enough as soon as 7am came, his heart rate disappeared. It was then that I had an emergency C-Section. I remember being taken down the hall to the OR..all of the fears, anticipation….Will he survive? what will he look like? will he have DS? When will I be able to see him??? Where will he be when I wake up??? Please God, save my child…let this be a day for a miracle! On July 25th 2006, Dillon was born at 9am crying loud & clear!! He was 4lbs 11 oz and 17 inches long. Although Dillon was a pretty shade of blue when he born, he managed to make steadfast progress every hour. His vital’s were stable enough that the Neonatologists & Cardiologists decided to hold off on his heart surgery. Everyone was so amazed at how well he was doing and yes, he was our miracle! Dillon was the biggest baby in the NICU. The following week is when I received the result of Dillon’s Mosaic Down Syndrome. The Human Genetics Doctor sat down with me and gave me all of the information that I needed. When the doctor left, I remember sitting in the room alone realizing how deep down inside, I knew he had it, but, yet, I was so terrified…not of his disability, challenges he’d face medically but of how SOCIETY would treat him. I cried & cried…but then came to realize, WOW, look at how well he’s done just in the last 2 weeks! So, instead of grieving, I felt this peace come into my heart reassuring me that it was all going to be ok.
Dillon came home the following day and his open heart surgery was scheduled to be September 26, 2006. We took every day as a gift and Dillon was monitored closely by visiting Physician’s Assistant’s, Pediatrician and Cardiologists. What a treasure he was, a bundle of joy that I never anticipated to fill my heart with such amazing love!
Jill
My husband and I were shocked to find out that we were pregnant. We had four children total — mine, his and our son, Nicholas, who was four. Because of a blood clot on the placenta, I found myself at a maternal-fetal specialist. At a follow-up appointment at twelve weeks they saw a “substantial cystic hygroma” not only on her neck but also on her back and chest. I was warned that this could develop into a condition called fetal hydrops which would be fatal. I got the idea from the genetic counselor that many couples at this point decided to terminate because of the uncertainty of the situation. As difficult as those weeks were, my husband and I felt strongly that it was our job as parents to hang in there and hope for the best for our tiny little baby.
I had many ultrasounds and many visits with a smart and understanding maternal-fetal specialist (who happened to have an 18 month old niece with Down Syndrome) while he tried to do an earlier amnio or CVS. Through these ultrasounds I got to know my baby. My husband and I just wanted a chance to meet her! Finally at 14 weeks, the doctor was able to do CVS. By the time we got the definitive diagnosis at 16 weeks, I was pretty sure that she (I was very sure the baby was a she) had Down Syndrome. The ultrasound technicians and the doctor had pointed out soft signs at each visit. Shortly after the CVS results came back, a pediatric cardiologist came to an ultrasound visit and said her heart looked good. The hygroma began to shrink! Then a few weeks later, Dora was diagnosed with duodenal atresia. So we were aware fairly early that she would require a hospital stay and surgery a few days after her birth. She ended up needing two surgeries which have successfully corrected her intestinal issues.
My husband and I are very grateful for how and when we learned that Dora has Down Syndrome. We believe that it gave us the chance to prepare ourselves. We were able to look at her NICU stay as a positive, we were ready for her surgery. We enjoyed our time with her in the NICU, because it is where we fell totally and completely in love with her. And our positive outlook was contagious. Family, friends, doctors, nurses, everyone was positive and supportive and attentive. They remain so today.
Dora is now almost two years old. She is healthy and happy. She walks and dances and kisses and hugs. She has only a few words and uses a few signs but she has no problem bossing everyone around. She likes to scramble up the stairs and gets in trouble for going to into the garbage. She is a special, unique presence in our lives. We would not change a single thing about her.
Chris
Who we are today – February 2009
Hello. I’m Chris McAuliffe. My wife, Cheryl, and I have three beautiful daughters; Erin’s ajJunior in college, Kade is a junior in high school and Rose is a fourth grader at our neighborhood elementary school. They are all really interesting people; (usually) good students, soccer players, on-and-off musicians and they have friends and have some drama in their lives. They were all unexpected, but welcome, surprises for us. Technically we were an ‘infertile couple’. Years of trying and medical help led to the birth of, Erin, our first child; after more surgeries and fertility treatments we decided to let nature take its course and were happy to be surprised twice more.
My two older daughters have the regular number of chromosomes, my youngest daughter, Rose, has Down syndrome. My wife and I were 39 when we found out we were expecting another baby. Because of Cheryl’s age, and the lateness of the pregnancy an amniocentesis was recommended and we started down a path that we thought was just a formality. I really only had a vague idea as to what the purpose of the tests were. I knew with each pregnancy my wife and I worried through various blood tests hoping for some kind of confirmation that our child was going to be ‘normal’ while never really having any idea what ‘not normal’ was; thinking that it is the kind of bad thing that happens to other people, not to me.
What it was like when we first found out – September 1998
This is our first picture of Rose taken at Cheryl’s amniocentesis at UCONN Medical Center in Farmington, CT. Before the test, we had talked with the genetic counselor, Alicia. We told her that we were going to have the baby regardless of what the test results were. Alicia advised us that even if we said we definitely wanted the baby no matter what, you still want to know the baby’s health conditions so that, if necessary, the best possible medical attention can be available. I suspect she knew that what parents-to-be say before they know is often different that what they do after they know. In hindsight, I realize that’s what we said because in our minds, while we were scared that our child-to-be might have a disability, it was an abstract fear, something that you pass through on your way to the birth of your healthy child.
A week after the amniocentesis Cheryl got the call from Alicia one morning after getting Erin and Katie off to school. I was already at work. The news was our baby-to-be had Down syndrome, Trisomy 21, an extra chromosome where you don’t want to have one. Cheryl asked, “Are you sure you counted correctly?” then “Is it a boy or a girl?” Then Cheryl called me at work. We talked briefly. We were both in shock. I remember going home at lunch time. We just sat on the couch and hugged each other and cried. We had no idea what to expect or what to do. We were numb.
That night, we tried to tell Erin and Katie that the baby had some problems, that she had Down syndrome. We told them but we really didn’t know what it meant ourselves. We tried to explain about mental retardation and some of the physical appearance characteristics but, in general, we left them pretty confused. We really didn’t have a good idea of what the baby would be like. And we really didn’t know how to explain what it feels like, as parents, to have all your expectations for your unborn child turned on end. Descriptions of different looking eyes, a crease across the palm and learning slower doesn’t equate to terrified parents in the minds of any nine and five-year-old.
Over the next few days, we picked up a few books, for us and for the kids. We read and started to get a glimmer of understanding. Pictures in the books helped; Erin and Katie could pick up some subtle differences but in general, kids looked like kids and babies looked like babies and I think they found that somewhat reassuring.
Cheryl is an RN so she was already aware of some of the medical problems that people with Down syndrome can face. But I’m an engineer with limited medical knowledge so the list of possible birth defects was more than overwhelming and unexpected. We tried to tell our parents and siblings as soon as we could. Everyone was very supportive in a shared grief sort of way. Cheryl discussed termination with one of my sisters, Anne, who had always been open about a woman’s right to choose.
Now I realize that part of the reason we were so poorly prepared is because the information we were given about life with Down syndrome was … next to nothing, medical only in nature and nothing about day to day life. There was a complete absence of any information about children with Down syndrome living successful lives with their families in their communities. The genetic counselor did give us a pile of handouts on grieving the loss of our pregnancy and some reassurance that if we were to continue the pregnancy but didn’t want to raise the child ourselves there were people willing to adopt. It was a small reassurance but that became the definition of the child we were now expecting.
We met with Alicia again to discuss the test results. We were still hoping for a reprieve and thought if we asked the right questions we might find one. Have these test results ever been wrong? Well, not in over a thousand positive results in UCONN’s medical testing history. Could the baby have a rare and less severe form, Mosaic Down syndrome? (This is where the extra chromosome is present in only some, not all of the baby’s cells.) Maybe, but not likely, Alicia said. They had tested over 30 cells and they all had the extra chromosome. Alicia gave us some more medical information about babies with Down syndrome. Much of this we had read in the last few days. The hardest piece of news, though, was that these babies are a very high-risk pregnancy. One in four doesn’t survive the pregnancy; either miscarriages or stillbirths could happen at anytime. That was hard to take. Even if we chose to have her she could still be taken away from us. There was no reprieve.
Cheryl and I had a long-planned weekend getaway to San Francisco coming up. We had made plans way back when we first found out she was pregnant. The thought was to cash in my Frequent Flyer miles and get some quality couple time before our family expanded to three children. Now it became tied to the deadline for legal terminations. An intended stress relief had become a source for more pressure.
Alicia worked to schedule a level II ultrasound before our double deadline. She thought we should have as much information as possible before the date to decide passed. We already knew our baby-to-be was a girl from the amnio. Rose was Rose from that moment. I tease Cheryl that the name came from the leading character from the previous summer’s blockbuster movie, Titanic, but it is a name with a long family history; my mother was named Rosemary, my grandmother was Rose and my sister was MaryRose. Either way now, Rose was a Rose.
We learned from the level II ultra sound that Rose had a major heart defect. Based on a first look, the doctor thought maybe she had an ASD or an atrial septum defect; possibly it could heal as the baby grew and maybe surgery wouldn’t be necessary. Further study showed that Rose had an ASD with a VSD or a ventricle septum defect; the two together are called an Endocardial Cushion Defect. Surgery would definitely be required. This was another shock to our world; our baby-to-be had Down syndrome AND a major heart defect that would require open-heart surgery in the first few months of her life. The news was crushing; last hopes for a normal life had finally been severed. Cheryl laid on the examining table, dressed only in an examining gown, a blanket across her legs, her belly bare; she cried like she’d never stop. I held her and gave no comfort.
I wish I could explain our decision process to you. Somehow, after rushed tests, constant reminders that time was running out; and a deep void of information, we did decide to keep our child. We went to San Francisco and actually enjoyed ourselves. Despite that everything we’d been told, I felt like Rose would be safe as long as she was in her mother’s womb. This was our calm respite before our lives turned stormy. We took that respite and found comfort in each other for a few days.
Why did we decide to have this baby? Why did we decide to keep this child? I honestly don’t know. I’m guessing that probably 18 years of an infertile couple’s yearning to have children wouldn’t allow us to not have a child that was so close. But it’s just a guess. I know Cheryl and I never discussed the issue in detail. Facts were shared, commitments were withheld. When did we decide? I don’t know that either. But I do remember one day holding Cheryl, we were standing in the middle of our kitchen. She had been crying again and I held her. This time I found the words that did bring some comfort. I told her I wanted Rose’s middle name to be Christina, to be named after me. Cheryl stopped crying and smiled as best she could. Giving the child my name, I had finally claimed her as my own. It was the first step in Rose changing from a diagnosis to a person.
Getting a prenatal diagnosis did have an up side; we had some time to work through the shock of the diagnosis and to grieve the loss of the child we thought we were going to have. We had had, in our hearts, a generally positive outlook on life. We were able to regain some of that in time to celebrate Rose’s birth.
But even then I definitely thought our lives would never be the same. I thought we were going to suffer. At best we were going to live the most dignified family life of suffering we could manage. Thankfully in this and many other ways I was wrong. And especially, thankfully a precarious decision we made based on the thinnest of information is one we live with joyfully today. But our lives have definitely been changed by Rose and by the changes she has forced within us. And for that I am very grateful.
One more thought, this was not an overnight conversion but came in many unplanned and unexpected moments. One that brought my first tangible relief arrived almost two years later when we attended our first Connecticut Down Syndrome Congress Convention. It was held at a local high school. There was a keynote speaker to be inspired by and workshops to learn from but it was lunch in a school cafeteria that brought true inspiration. The simple sight of a father enjoying conversation and a hotdog with his son, Henry, a 9-year-old with Down syndrome, quietly and forever shattered my plans for a lifetime of suffering.
Rose today – February 2009
I was an ignorant person. My perceptions of what was and wasn’t possible has been torn down and pieced back together time and time again as Rose has grown from a fragile newborn into a vivacious, curious, playful and sometimes precocious nine-year-old. Yes, there have been a few tough nights and, yes, Rose has had more than her share of hospital visits. But no one is defined only by their medical problems. Yes, she didn’t walk until after she was more than two years old but the next month she was in a parent and tots swim class enjoying her self as much and doing as well as anyone. And, yes, her speech was delayed. She didn’t talk until almost 4 ½ years old. But she learned to sign instead; her family learned and signed, her teachers signed. And today she talks as fast and as none stop as her two older sisters. If being the parent of those two older girls has taught us anything, all kids have some extra drama in their lives.
Rose is definitely making her way. The birthday party invitations have come. The friendships are being made in our neighborhood, on soccer teams and softball teams, at theatre and at swim lessons. She plays in the same leagues her sisters played in, performs at the same community theatre, goes to the same schools and has many of the same teachers her older sisters had. She’s a reader and a writer and her first soccer goal had been scored. What she can do is not defined by predetermined low expectations and limited opportunities. Rose is not ‘mild’ or ‘high-functioning’; she is not an ‘exception’ or an ‘angel’. She’s just a kid that’s her own person. Like many of the children with Down syndrome that I’ve had a chance to meet through the CDSC, Rose is a capable and successful individual because she has been given the opportunity to thrive and succeed in our family and our schools, in a community that welcomes, supports and encourages her, just as anyone would hope for any child.
And yet I go back to the decision Cheryl and I struggled with. If I had known nine-year-old Rose back when we first learned of her diagnosis of Down syndrome, I would have been immensely better informed. If I had known one-year-old Rose or even, if I had the benefit of meeting one-day-old Rose I would have had something to fill the void of what it’s like to live with someone with Down syndrome. As Mary Welker, a Child-Life specialist from CCMC, once told my wife and me; not telling a child the truth will only lead them to imagine something much, much worse. I can tell you that’s true of parents as well.
Ignorance is the absence of information and understanding. Expecting parents need up-to-date, accurate real life stories when they are making these critical decisions about what child to welcome into their lives. They need to know what is possible and what is happening everyday already in families in their community.
Here’s what’s happening in our family…
Erin (19), Rose (9) and Katie (15)
Terri
I was 39 at the time I got pregnant (and delivered Cameron at age 40). My AFP test came back high (1 in 38 chance of DS). Based on that, my doctor sent me for a Level 2 Ultrasound at UConn. During the ultrasound everything appeared to be “normal.” At that time, however, I asked the doctor if she could say with certainty that my child (we didn’t know sex at the time) would not be born with DS. Of course, she could not guarantee anything.
It was at that point that I decided I wanted to do Amniocentesis because now I wanted to know 100% sure either way. (My husband was fine with the ultrasound, but said it was up to me as to what I wanted to do.). So we did the amnio on that same visit.
When the test came back positive, of course, we were devastated. We went through all the denial, etc. And, we went to genetics counseling at UConn. Honestly, I was mortified that abortion was an option for a diagnosis of Down syndrome. I had no idea at the time. My husband and I didn’t even bat an eye – we basically told the counselor, it’s not an option for us so now what?
So we gathered as much information as we could on the topic – let me tell you some of the stuff we found was so scary…and as we have since discovered — way out of date! We had limited exposure to anyone with Down syndrome, but we felt we were ready and willing to take on the challenge as scary as it seemed at the time.
We went through many ups and downs during my pregnancy, even wondering if the amnio could have been wrong (even though we knew deep down it wasn’t) and did a lot of research. We got as much information as we could…and had continued ultrasounds and other testing to go along with the Down syndrome diagnosis.
I contacted Birth to 3 in advance, I was able to talk to his pediatrician in advance about the diagnosis, and because we knew about the diagnosis, we had the pediatrician on hand for his delivery. In the end, we were totally prepared for the delivery of our beautiful 8 lb. 3 oz. baby boy, Cameron! Oh yeah, we knew in advance he be a boy because of the amnio — knowing the chromosome was known I just had to know what that was, too.
I’m glad I knew ahead of time because it gave me time to deal with the information and process a lot of the fear in advance. When Cameron was born I felt like I was just able to enjoy the birth and enjoy him.
We are blessed to have this awesome kid…he is a joy every day…and I wouldn’t trade the journey we’ve had for anything in the world.
Amy
When we first found out at our 18-week ultrasound that our baby had a complex heart condition and that the prognosis was unclear, we were absolutely devastated. Until there were further tests, there was no way to know what her chances were of even making it to birth. In a matter of minutes, we went from finding out we were having a girl, to she might die before she’s even born. Although we had already decided we wouldn’t terminate if she had Down syndrome we decided to do the amnio anyway since it was possible she had some other condition that would warrant termination to protect me or protect her from suffering.
After 24 hours we got the initial results which coupled with the heart condition lead them to a near 100% positive that she had Down syndrome. Again, we were devastated. There was a lot of talk about termination from the docs and geneticists with little practical information about children with Down syndrome. We were given a great packet from the geneticists re: Down syndrome which was encouraging, but most of the positive/encouraging support did not come until after we had made the decision not to terminate.
After a few days of grieving the “lost” dream of the “typical” child, we began to celebrate the “new” baby that we were given. It was almost as if we miscarried one baby and then were blessed with another. After a brief period of grieving it was as if the pregnancy started all over again. We began to bond with the “new” baby. We also used this time to line up our team of professionals and support from our own family and friends, as well as new friends with children with conditions like our baby would have. And the more we talked to and heard from other parents, as opposed to doctors who tended to focus on all the things that can go wrong, the more we began to realize what a gift we had been given. Our excitement began to grow and grow.
Of course our excitement was also laced with some fear of the unexpected (as with any child) and some fear of having a child with “special needs”. But those feelings were fewer then the joys of anticipating the birth of our third child! When our beautiful Chloe was born she was immediately placed on my belly and I quickly examined her for all her Down syndrome symptoms. I found myself picking out EVERY little detail and feeling a little disappointed that in fact they hadn’t made a mistake. But as the day went on I started to see MY baby and no longer the Down syndrome. By the next day, I was barely seeing those little traits, and by the end of the second day they were basically gone to me. As with every child I was overwhelmed by how much she was already intertwined with my heart. I quickly fell deeply in love with her! We all knew right away, that she was our little angel. Our gift.
We are VERY thankful that we found out everything we could about her conditions before we were born. In addition to allowing us to grieve long before she would be born, it also allowed us to strengthen the bonds with those around us that we knew would support us, as well as to build medical and developmental teams. We were also able to hear from real parents what their experiences are like and the joys that we could look forward to. It also gave us the time we needed to educate our children. We have no regrets and wouldn’t do things any other way.
Jessica
It was October 2005 that we found out that Joey has Down syndrome. There I was, only a couple months pregnant, pregnant with our first child, and went in for my First Trimester ultrasound. The ultrasound technician was such a pleasant lady showing me different parts of my baby’s body when she suddenly got this look of concern on her face. She finished up the ultrasound and left the room. I laid there on the bed confused, “why did she make a face like that? I heard my baby’s heartbeat and saw it moving, what could be wrong?” She came back in with the doctor a couple minutes later and the doctor started doing another ultrasound. He went directly to the neck then the face. The doctor looked at me and told me that my baby had a cystic hygroma on it’s neck which was a fluid filled sac and that it’s nose was smaller than most babies’ noses at that gestation.
I was so confused, he then proceeded to tell me that there was a good chance that my baby has Down syndrome and that I should go talk to their genetic counselor.I laid there on the table confused and started to cry. I knew when he told me that, that my baby had Down syndrome. I just had a feeling. I was shaking and didn’t know what to do. The ultrasound technician led me into the genetic counselor’s office. I sat there in the chair and waited for her to come in. Once she arrived, she proceeded to advice me on getting my baby tested through CVS or amniocentesis. I told the counselor that I needed to go home and talk with my husband before I made any decisions on testing.I left with a pile of various articles on genetic testing, and Down syndrome. When I got out to my car, I went into hysterics. This was going to be our first child and it most likely had Down syndrome. I thought that only older woman had babies with Ds. I was only 24 years old! I called my boss since I was suppose to go back into work and told her what happened. She told me to go home and take it easy. Then I called my husband and told him, then called my mom and really lost it.
I finally calmed down enough to drive home. I walked in our house and was greeted by our dog. I sat on the couch and I don’t think I did much else until my husband got home. We sat down after he got home and talked. We knew the risks with genetic testing but since this was our first child, we decided to go ahead with the CVS.
It took less than a week for the results to come in. I had just gotten home from work when the phone rang. My husband wasn’t even home yet. I looked at the Caller ID and saw that it was my OB and he was calling from his home. I knew before I picked up the phone what he was going to tell me. He told me that my baby had Trisomy 21 and that it was a boy.
I hung up with the doctor and sat still for a minute before I reacted. I went into complete hysterics. I was uncontrollable. I tried calling my husband, no answer. So I called my mom clear out in Ohio. She made me call my in-laws right down the road so I wouldn’t be alone and then tried to calm me down. I finally calmed down a little and got my husband on the phone. In the mean time, my father-in-law and sister-in-law came over so I wasn’t alone. My husband finally got home and the four us of us sat there and didn’t know what to do or say.
I got online and started looking up websites on Down syndrome. The more I thought about it, the less upset I was and I started getting excited, then I realized, “IT’S A BOY!!!” We wanted a boy so bad and we were getting him! Down syndrome or not, it was going to be a boy! We had picked out the name Joseph Patrick after my father-in-law. He had actually asked me if we were still going to use his name, I asked him if he still wanted us to and he said, “of course!” My father-in-law has always been our number one supporter and adores Joey with all of his heart. I couldn’t ask for better in-laws. I love them dearly!
I started reading more and more on Down syndrome. I wanted to educate myself, along with our families as much as I could before Joey was born. I read every article I could find and bought every book I could find. (Of course, I look at those books now and laugh- most of the time, they’re useless. All of our children are so different, the books barely did any good.
I found the Connecticut Down Syndrome Congress and we joined immediately. Luckily, we hadn’t missed that year’s convention yet. We registered and went to it a month later. That day we met so many other parents of children with Down syndrome and realized we weren’t alone.
I look back on how silly I acted, almost thinking that it was the end of the world and almost laugh at myself. God chose us to have Joey and I wouldn’t have in any other way. I have started to dedicate my life in becoming an advocate on Down syndrome and to being the best mom I can be for Joey and future children we will have. I love Joey with all my heart, extra chromosomes and all!