Welcome back, everyone! I have said this before and I will say it again- this project has really been such a wonderful experience for me. I have loved meeting some new families and hearing other's stories. It is my desire that we have helped spread awareness that every life is beautiful- even when that life happens to come with an extra chromosome. That being said, here is the last story for this year's Down Syndrome Awareness Month. I hope you enjoy this beautiful story about Matthew, told by his amazing mom, Liz.
I have always wanted to be a mom. My earliest memory is stuffing a doll up my shirt to mimic breastfeeding. What mothering involved was unclear to me, but I knew it included a great deal of love so that was good enough for me.
Getting pregnant took longer than I expected, but on Christmas morning 2011 I had a positive pregnancy test and was elated. I loved being pregnant. I felt fantastic and was completely enamored with my body's ability to grow another human being.
Fast forward to a misty Sunday morning in August 2012. After laboring through the night, Dr. Leeman of UNMH guided me as I wiggled and pushed our son into the world. A flood of endorphins surged through me. I was exhausted and overjoyed. As I cradled our son in my arms, I stared at him and felt and intense recognition that he was mine. We named him Matthew, our gift from God.
After delivery, the hustle and bustle of the room continued to spin around us and soon gained a rhythm. I remember the nurses kept wanting to take Matthew from my arms. I knew it was necessary but I had no desire to let him go. Eventually, I released him with strict orders to my husband to stay with him.
In time, we were reunited and wheeled to the Mother Baby Unit. I expected we would rest, recover and return home in short order to start our life as a family. We had asked for all of Matthew’s care to be given in our recovery room, but were told due to staffing that he would need to be seen in the newborn nursery. Once tucked in bed, I remember thinking I’ll close my eyes for a short bit before they bring Matthew back from the nursery. I must have fallen asleep.
When I opened my eyes, there were two doctors sitting beside my bed. Though their faces were kindly, I didn’t recognize either one of them. “We think your baby may have Down syndrome.” All of their words before and after that sentence were static and the word “may” felt like it was written in marque letters that filled the room.
Seven years later, Matthew is a rambunctious, fun-loving little boy who does indeed have Down syndrome. Reflecting back on receiving Matthew’s diagnosis, I’ve thought a lot about the word “may”. Hours and days after delivery, I clung to that word as an anchor. I worried what health conditions Matthew would have and how others would treat him because of his diagnosis. More than anything, I feared the unknown.
What I have come to learn is mothering is all about the unknown. Whether your child has 46 or 47 chromosomes, mothering is demanding, unrelenting, deeply rewarding and full of unknowns. Though there have been many times I missed the mark as to what mothering involved, I have been right about one thing. No matter the number of chromosomes your child has, mothering includes a great deal of love and that is good enough for me.
Thank you, Forster family, for sharing your beautiful story! I can't wait to see you soon!!
The following story is from friends, Christy and Matt, who have extraordinarily beautiful hearts and an equally beautiful story. I hope you enjoy it.
We Choose You
Our journey into Down syndrome is different than most. Six years ago, our heart strings were tugged as we heard of a one year old little boy with Down syndrome on the other side of the world that needed a family. Just like someone who might get a diagnosis, we started researching and questioning what our life would look like, we wondered whether we would be capable of raising a child with special needs.
Probably the scariest "yes" I have ever muttered with mountains of unknowns was when we said "yes" to adopting our son Endale (pronounced "in-dah-lay") the Ethiopian word for "as the Lord says"). We did mounds of paperwork and jumped through all the hoops to get our boy. Nine months later, we boarded a plane to Ethiopia to bring him home to his forever family. We chose him. We chose whatever life might bring, because it was better with him in it.
This bold step and intimidating "yes" changed the course and legacy of our family. You see, Endale changed me. He changed our family and the lives of our children and everyone he meets. We began to wonder if we could do more. Indeed, we could, but again the choice would have to be made. We would have to choose this life again.
A year and a half later, we fell in love with a little girl in China that happened to have Down syndrome too. She was listed on Reece's Rainbow (www.reecesrainbow.com), an advocacy site for children all over the world with Down syndrome and other special needs that need families to choose them. We said "yes" again. During the process, we found out about another little boy at her orphanage who also had Down syndrome and well, we said "yes" to him too. Eleven months later, we brought two sweet Asian babes with Down syndrome home to the USA with their forever family.
Some might call us crazy and that's okay. We can't unsee the things we've seen in other countries. The way children with special needs are treated broke our hearts and we knew we could do something. The truth is they have changed and blessed us far more than we could ever do for them. Matter of fact, we'll be bringing home our newest daughter from Bulgaria who also rocks an extra chromosome in the next few months.
We are blessed people. Our family is forever changed. We do not think about them having Down syndrome or being from a different country or even having other birth parents. They are OURS. They are our beautiful, wonderfully made with a purpose children. What gifts they are! We would choose this life over and over again.
A little about us: Matt and Christy have been married for 21+ years and live in Rio Rancho, NM. They have 3 biological children, ages 18, 13, 11 and 3 adopted children ages 7, 7, and 8. Endale was born in Ethiopia and has been home almost 6 years. LillyAnn and Levi were both born in China and have been home almost 4 years. They are anxiously awaiting the finalization of the adoption of their newest daughter, born in Bulgaria, Glory, age 2, and hoping to have her home by Christmas. "We love because HE first loved us." 1 John 4:19
Thank you, Christy and Matt, for sharing your amazing story! Thank you for choosing these beautiful children, who are indeed wonderfully made.
Hey, hey, hey! I hope you are all enjoying reading these awesome stories from a few local families who celebrate Down Syndrome Awareness Month! I have another great story to share with you today from one of my good friends, Stephanie.
Here is what she wrote about her youngest daughter, Isabella:
October is a special time of the year for our family, not only is it Down Syndrome Awareness, but it is also the month that Isabella was born in. Isabella, or Izzy for short, was supposed to be a December baby, but due to some pregnancy complications, not related to her having Down syndrome, decided to come when I was 7 months pregnant with her weighing a whole 3 lbs and 15 inches long.
We found out Isabella could possibly have Down syndrome when I was about 5 months pregnant. We found out she did have a heart defect that would require her to have open heart surgery within the first 6 months of life. The type of congenital heart defect she was diagnosed with is called a complete AV Canal. We were told that this type of heart defect is seen in a higher percentage of babies born with Down syndrome. We were in the doctor's office when we found this out, and we were left in a room for about 5 minutes to gather our thoughts and then taken into the geneticist's office. I was so confused as to why we were in there. It hadn't hit me that the geneticist was implying that my unborn baby could have Down syndrome. She started talking about options: termination, adoption, meeting other families that have a child with Down syndrome, having an amniocentesis to confirm the diagnosis. Then she mentioned having a free cell DNA blood test that could possibly predict if I was at high risk or low risk for having a child with Down syndrome. Still, I was so confused, why were they still talking to me about Down syndrome? There was no way in the world that I could have a child with Down syndrome. I was 29 at the time. Doesn't this only happen to older women? Or so I thought at the time.
About a week later, I received a call from the geneticist, stating she had received my blood test results...and it showed I was at high risk of having a child with Down syndrome. My heart dropped... and it was a 95% chance the baby would have it, the geneticist said because of her type of heart defect. You dream about this child that you're going to have and then those dreams are just ripped away from you. There was a grieving process I had to allow myself to go through to truly appreciate the little girl I have today.
Isabella has shown and proven that having Down syndrome is NOT disability. She is not disabled, she is not handicapped, and she sure is not the "r"word. But I will tell you what she is: she is a 2 year old, just like any 2 year old. She pushes boundaries, she can walk, she can communicate with words and signs, she plays with her baby dolls, she laughs and smiles, she has tantrums and gets put in time out, she can climb, she can run, she rides horses every week, she feeds herself, she adores her older sister Allie, and most importantly she loves unconditionally.
For this Down Syndrome Awareness Month, I encourage people to ask about what they don't know about Down syndrome. Believe me, I was clueless when we were told about her diagnosis, and now I enjoy when people ask me questions because it is spreading awareness and I want people to know about Isabella and what she is capable of doing!
Stephanie, thank you so much for sharing your story. I agree with you- Isabella is capable of SO much. She is able, she is beautiful, she is amazing. Happy Down Syndrome Awareness Month, and happy almost birthday to your beautiful girl!
Happy Monday, everyone! Here is another post to help celebrate Down Syndrome Awareness Month! I hope you enjoy it!
The handsome young man pictured below is Johnny, and the poem is from his mother, Cynthia. It was a pleasure getting to know them. Johnny had a great time taking photos, and he even sang for me! I was honored! I hope to see them again very soon!
I see as you pull your child away as he approaches
I hear your remarks as my son tries to interact with your child
I see as your child sees his innocence
My invisible child is now a man
He sees as you pull your child away as he approaches he smiles and steps back
He hears as teenagers and adults won't take the time to speak with him
He smiles and quotes facts about music, movies and life
He hears when the world snickers at his existence
He smiles brighter, forgives faster, and loves deeper
He is segregated from your society
Thriving in his own world
Thank you, Cynthia, for sharing with me. It meant the world to me! And Johnny, always remember, the things that make you different are what makes you beautiful. <3
Ooooh October, my favorite month of the year! It is not only my favorite because of the changing leaves and the crisp air, but also because it is Down Syndrome Awareness Month! Down Syndrome Awareness Month provides an opportunity for spreading awareness about what Down syndrome is and how people with Down syndrome bring such beauty to this world. My son Logan, was born with Trisomy 21 ( a form of Down syndrome) and I would not trade him for anything. He has given me such a wonderful outlook on my own life, and he has taught me so much. I celebrate being a mom to him and my other son, Clark, every single day.
This year, for Down Syndrome Awareness Month, I thought it would be neat to hear stories and experiences from families in our community who have a family member or family members with Down syndrome. I will be sharing 1-2 stories per week all month featuring these families and individuals. I hope you enjoy their stories as much as I do! Taking this project on has absolutely been one of the highlights of my year.
And now, without further ado, I present to you Kaaren's story about her son, Dane.
My name is Kaaren. I am going to share a snippet of my life with my miracle child whose name is Jackson "Dane." I had fertility problems, and I had gone through treatment. I was told by the fertility specialist that I had a 5% chance of getting pregnant with my own eggs. Well, a year after stopping fertility treatment, I got pregnant. Dane fell into that 5% chance, hence him being my miracle child.
I chose not to have amniocentesis because I knew my risk for my age for having a child with Down syndrome, and I absolutely didn't want to chance a miscarriage. I had an easy pregnancy, and I loved being pregnant. It wasn't until about 28 weeks, when the perinatologist picked up two anomalies on the 3D ultrasound that I knew something would be different. I am a medical provider, so I knew then that my child most likely would have Down syndrome. Again, amniocentesis was suggested and I declined.
Dane entered the world when I was 35 weeks along. He spent the first 3 weeks of his life in the NICU. He had surgery on his intestines for duodenal atresia. He also had a seizure disorder. We were blessed that he did not have any heart problems.
Fasting forward. Dane received physical therapy and occupational therapy from about 2-3 months on with an early intervention program. I am grateful for Lucy, Dane's PT, who was honest about how long it might take for Dane to go through the typical milestones of rolling, sitting, crawling, to walking. Dane didn't walk until after his sixth birthday. Lots of patience, practice, and serious perseverance. He was born with really low muscle tone, and his muscles just weren't ready until age 6 for him to be physically ready to walk on his own. I remember crying tears of joy the first time he took his first few steps on his own.
Getting Dane to transition from a bottle to a sippy, and potty trained have been our biggest hurdles. And yes, it can be frustrating. I can be honest and tell you that I am sick of changing diapers. But, in a moment of frustration, I can stop and reflect and remember thinking he might not ever walk. Dane will accomplish these hurdles, but when he is physically ready to do so. Repetition is all we can do.
Dane has been treated like any other baby and child in our family. Lots of bonding and love. I have had people say to me that I should have another child so that I would have a "normal" kid. Completely offensive, implying Dane is less than. Down syndrome, let alone any other diagnosis of special needs doesn't equate to less than as a human. Look at my child first and his diagnosis second. Dane has taught me how to slow down, and enjoy life. I wouldn't change a thing about my child. He is a ray of sunshine with a sassy personality.
Many thanks to Kaaren, for sharing her story. She is an amazing mom, and Dane is incredible. This world is a better place with Dane in it! <3