Katie and her little man!
A few weeks ago I had the immense privilege of coming
across a facebook page in my news feed, titled: Down Syndrome Love. This incredible page brings together parents of children with Down Syndrome, shares stories of beauty, hope, and support for all families. This is a page for more than those with Down’s children blessing their families, it’s a page that can educate and bring people together. I have been given the immense privilege and pleasure of getting to interview the administrator and creator of the page.
Meet Katie and her family:
Katie has been married (to the man of her dreams) Brett for almost fifteen wonderful years. She is a stay-at-home/work-from-home mom and “Wrapoloigst” with It Works! Global. Her wonderful husband wears the “badge”proudly as a police officer serving his
community. “We live in a NW suburb of Houston Texas with four totally and dramatically different children.” While they live in the city they crave the softer country life; the quiet and peace of having a sanctuary, “One day, one day soon!” She says.
Their oldest son is 14 and is starting his freshman year of high school
this year. “He’s an out of the box thinker and quite quirky! You find yourself lost with most of what he says because he is so brilliant, so I
nod a lot,” says Katie. Their second child and their only girl will be twelve in September. “She is the second mommy around our house and the best helper I could ever ask for.” She’s a straight A student and plays select softball and is a favorite shopping buddy to her mom.
“We thought we were done after those two, but decided way later to add another and that is where my little spit fire three year old son comes into play. He’s stubborn as the day is long, 110% all boy, and the strongest willed little thing you will ever meet.” Despite being a “Little Spit Fire” he is also described as the best snuggler and melts hearts with just a smile. “Of course after number three we said, ‘What’s one more?!?!’ Sweet little number four is our special little miracle that came with a little something extra. He’s super silly, can be lazy, has the cutest sly look, and gives the best hold-your-face kisses, and will love you forever.
I work in a residential care facility providing assistance for those with intellectual disabilities. Working with these incredible people has changed my life and has taught me so much about what it means to be human. As a parent myself, I understand that you want the absolute most for your child, understanding that those with “a little something extra” is in fact a beautiful thing, I have not myself been faced with it in my own family. My understanding of how it affects a family is therefore limited. Katie
describes her reaction to their diagnosis in her own words here:
“First and foremost, this sweet baby boy was a gift from God and our baby no matter what. When we were notified that our quad-screen came back elevated and “at risk”, we were offered an amino (Amniocentesis Test- See Below), but we refused. Down syndrome or not, an amino carried a risk of miscarriage. It was not worth curing my curiosity to know what I would eventually know in a couple of months.
Good thing that we had an amazing Christian doctor who was 100% behind our decision and agreed, so he did make us aware that there was a non-invasive option with a Level II ultrasound. He said that he would send us to a specialist and they would do a very detailed and long scan and should be able to tell from their findings. All we were concerned about was his health, which was mainly his heart. First thing that came to mind when I heard the possibility of Down syndrome was the heart problems and babies going through heart surgery at such a young age. Once we saw
that his heart was just fine, that was that.
We still needed to prepare for the arrival of a new baby just like we did
the other three times and knowing that all in all he was healthy was all that mattered. Down syndrome was just something that would be; no matter what I did from there. Honestly, God tells me a lot of things, and my husband can attest to it and He told me that my sweet boy had Down syndrome. More than any percentage a doctor could give me.”
Amniocentesis is a prenatal test in which a small amount of amniotic
fluid is removed from the sac surrounding the fetus for testing. For further information on what this test is, see here: http://www.webmd.com/baby/guide/amniocentesis
Seeing "C"'s beautiful eyes for the first time...
“I think fear set in. I had a panic attack on the way home from our very last doctor’s appointment days earlier. I knew he had it, but up to that point, I was still able to hide behind the pregnancy and the not knowing. So when he was born, my first words were, “Is he?” I feel guilty about that. I know it is a normal reaction and a valid question, but it still bothers me. It didn’t matter if he did, but I HAD TO KNOW if what God had revealed to me months earlier, was true. I remember looking at him and noticing his almond eyed, and nothing else. That was it. That was all I needed to confirm. After everyone stopped dancing around the possibility that he had Down syndrome, I was okay because God had answered our prayers; he was healthy. In the specialist’s office that day, my husband and I had prayed. Lord, if Down syndrome is to be our blessing, then I accept it, but let this sweet boy be healthy and he was. I was in love and smitten with his little something extra and happily accepted the challenge that God had set in front of us. I honestly
felt quite honored.”
As stated above having a child is challenging in itself, having a child
with health challenges is another thing entirely. Writing here I encourage “Living Enchanted” with your children, in any way possible. For a family with a child with Down's Syndrome that adds unique trials to a family. Aside from the obvious health concerns which thankfully were not as grave as they could have been, “C” is just like any other baby. To Katie the hardest part are the reactions of others when they meet her precious son. Like all other families, they take the rest as it comes.
“I would have to say that I probably struggle with the way that strangers look at him or obviously whisper about him, like I don’t notice or I am not right there. I struggle with not understanding what the big deal or hang-up is on my child having Down syndrome or being accepted. I guess when he was younger and smaller, I would wear him in a wrap close to me, so maybe people only saw that sweet little tiny baby all snuggled up, but now that he is older and more nosey and involved, they tend to notice him and his differences more often. I find myself trying to shrug it off, but most of the time I cry or get angry. Sometimes I walk away and think UGH, I should have said something, but was too much on the verge of tears to. I think he is perfect and beautiful and something extraordinary, so why doesn’t everyone else? If that is my main struggle right now, then I am blessed.”
As I started “Live Enchanted” a big focus of mine is the joys of
parenthood. Delighting in our children for exactly how they are. Katie says that she has realized how much parents take for granted, that she’s been taught to celebrate more and how blessed she feels to be his mother. To me this is what it’s all about. Regardless of the struggles and uniqueness in every family, it’s a surrounding love and celebration of who our children are. It is what shapes their adulthood, not into spoiled arrogant adults but men and women who understand love and family.
"I also now see the purpose of each of my children individually. My
oldest was such a content and happy baby. He wouldn’t let anything get him down and always found the positivity in everything, including being grounded! That has now helped form me into having the same view point. My daughter is our only girl and always wanted a baby brother. She was and is my right hand! She has always loved helping me clean, washing dishes, and making dinner, but she cherished her baby dolls more than anything else. She also has such a compassionate and giving heart and loves people no matter their differences. She will go out of her way to make someone feel welcome and included. Lastly, my rambunctious three year old was our game changer. After eight years of ‘being done having kids’, he changed the rest of our lives. Deciding to have him redirected our outlook on life. When he was born, there was a huge health scare that we overcame with prayer and faith and all turned out just fine! But those moments showed us that all is possible with Him, that we are strong, and not to take for granted just how precious pregnancy and
life is. Truly a gift.”
As with any family there are struggles too. Nothing is rainbows and roses all the time. I asked Katie what her biggest struggle is in her family. What may surprise you is that her struggles are the same as everyone else. Balance, sleep, being a busy parent, things that I imagine comes simply with having four children. Still in all of the hectic craziness that comes with that, she keeps a positive attitude.
“I am a pretty positive person, so I guess in my mind my struggles aren’t really struggles, more like bumps in the road. My bumps consist of not getting enough sleep, not enough hours in the day, and feeling like there is not enough of me to go around… At the end of the day, I feel like I succeed more than I fail and I have given my children and husband each what they needed!”
Katie has created a wonderful page on the social networking site
“Facebook” called Down Syndrome Love. This page has just exploded since its inception with now over 13,000 “likes” or “followers”.As I have read the comments it is clear that this page has touched the lives of many. She has a beautiful mission for her page inspired by her beautiful child.
“My special little boy was 100% my inspiration. I wanted to reach out to not only other Down syndrome families, but to bring awareness and teach others that have not been blessed with a special one in their lives. I wanted to educate them on the horrifying statistics of abortion of babies with Down syndrome, share victories and accomplishments, offer prayer and support, and inspire them to want to change the world right along with me! I call them my family because they are. I have made new friends and connected with people all over the world in a little over 2
months of starting this page with 13,000 followers, which is amazing and blows my mind! I have received messages from new parents to a baby with Down syndrome looking to connect or needing advice or even just an assurance that everything will be fine. I love getting messages about how my page is their favorite or that their view point has changed on people with Down syndrome. I hope that as it grows, Down syndrome Love will gain the reputation of being the place to come for questions and answers, education on DS, support, prayer, and that we will be
able to contribute more and be a voice in the DS community. All of my children inspire me differently, but with my baby boy, he is already expected to fail, so sometimes he just needs a little more admiration or cheer to get through obstacles that are normal everyday things to us.”
Education is the start to changing the views of others. Special individuals under any of the umbrella terms “intellectual disabilities” have been faced with incredible stigma. Society has somewhat moved away from the condemning and painful descriptions of the past but the lack of understanding still exists. Cruel words have been replaced with piety and condescension. This is not the step forward that parents and families of these individuals are looking for. Katie described to me her hopes for educating others:
“First and foremost, we are all more alike than different. Having a child with Down syndrome is one of the biggest blessings that you could ever experience, if you let it be! My child is not a result of something that I did wrong or a punishment from God. He was created to be who he is to be and there was not any mistake in that or why he is here. They are delayed not incompetent, meaning that they will reach all the milestones, but at no one’s pace but their own! My child is one of a kind, beautiful, loving, silly, and will light up the room with one dimply smile. He is NOT dumb, useless, a burden, or retarded! I am repulsed when I hear the “R”
word and know that there are so many other words that can be used in its place. When that word is used, it is referring to something being “Less Than” and I refuse to have my sweet boy associated with being less than anything!”
Lastly, I asked Katie what her hopes for the future are:
“I am looking forward to more independence for my older two, like teaching them to drive, high school graduation, and choosing colleges (but not the money that goes with it). I am looking forward to an super
excited to continue to build my crazy wrap business, spending the rest of my life with my gift from God, my husband, and watching my two youngest grow up in different times than when my older two did.
I am looking forward to God’s plan because it is always better than mine and has twists and turns that we never expect and I think that is so true with being blessed with our little special baby boy. I truly believe that this amazing Facebook page is just the start of something greater. Something greater from Him! I think that I would eventually like to make Down syndrome Love a non-profit and let it lead us from there. My sweet baby amazes me every day and makes my heart sing so loud. I am
looking forward to hearing him speak actual words, seeing him run, celebrating every victory that we get, and most of all, continuing to make a difference in this world.
Only a life lived for others is a life worthwhile. –Albert Einstein”
I have felt so blessed to have learned about this wonderful family. They
are an inspiration on what “Living Enchanted” is all about. It doesn’t mean
being crafty all the time, having constant outings, or Pinterest inspired
activity. The heart of it is loving your children and creating for them the best possible childhood. I have learned so much writing this with Katie. I have learned to accept my children better and to worry less. That the struggles are there regardless of your reality and that the most important thing is to let go and live. That blessings come in every package no matter what you’re sent.
I hope those who read this are touched the way I have been. I hope that
all of you check out her facebook page Down Syndrome Love to see the beautiful faces of children with “a little something extra”.
Educate your children and your own family about accepting those who are different. Together we can stop the staring and the negativity. If we promote acceptance and normalcy as a collective, we can help create change.
Bottom: www.dazzlejunction.com