“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.” ~A.A. Milne, from "Winnie the Pooh"
It has been unseasonably beautiful here in Indiana for the entire week. Liddy and I have been taking full advantage of the string of nearly 80 degree days, spending a little time outdoors each day. I'm pretty sure that she had forgotten the feel of sunshine on her face and the breeze blowing in her hair. She also notices things more now than she did the last time we were able to spend time outside.....which leads to a whole lot of new discoveries (including her shadow!).
I find myself thanking God again and again for showing me the world through this baby's eyes. Because of her, I am seeing a world that is a whole lot brighter....and a whole lot more amazing.
I needed the reminder.
Spending the extra time with her has reminded me that my baby will only be a baby for a little while longer...She is, in fact, quickly leaving behind the infant she was not so long ago and becoming more the little girl that I can expect to see a whole lot more of in the future. Every day that passes brings a little more independence and a lot more personality......Despite the fact that she sometimes seems miles behind in the major milestones of her "typical" peers, who have left behind crawling for more efficient modes of transportation while she still struggles to crawl, the little girl still steadily emerges.
It wasn't me, I swear!
The last few weeks have brought about a virtual explosion of language...and irrevocable proof that she understands everything that is going on around her.
I wasn't expecting that, although she might not be right where I would have expected her to be developmentally were it not for DS, the remaining vestiges of babyhood would quickly fade away anyway.
I needed the reminder.
As I tucked her into bed tonight, I took the extra time to play with her for a little while. Bedtime is the very best time of the day with her...not because she will soon fade into peaceful sleep, but because in those last few moments of the day, she is overflowing with laughter. As she fills my ears with the sound of her giggles, as I can't help but laugh along with her, the rest of the world fades away and time stands still, even if for only a moment. These precious minutes are fleeting...they are special.
I needed the reminder.
So tonight I sit here, in the quiet house, while my baby girl dances amid whatever it is that babies dream of, and I am beyond grateful for the changes this little girl has brought to my life. I am praising the slower pace that has allowed me a little extra time to enjoy this fleeting moment. Thankful for the path that has brought our family here, to this moment. By the grace of God....I am constantly reminded that while this may not have been the road we set out on, the beauty here is unfathomable.....
Life as we knew it came crashing down around us on a crisp, sunshiny September day in 2010. As we were coming to grips with what seemed to us a catastrophic heart defect in our as yet unborn daughter, a simple phone call swept the rug out from under our already unsteady feet. With five little casually spoken words, "Your baby has Down Syndrome", the remainder of my hopes and dreams for little Lydia went up in flames and the ashes of the life I had planned scattered in the wind. Or so I thought.
As we gradually adjusted to this new development, more than anything my focus was on her heart. The Down Syndrome was almost a non-issue....something I couldn't wrap my head around because worry about the heart defect and consequently, open heart surgery, consumed me. Somehow, DS doesn't seem as big of a deal when faced with the words heart failure and the thought that in a very real sense, the baby that has consumed your every waking moment for months, the pretty little girl on the ultrasound screen, the miracle you prayed for for years, was at risk of dying.
However, Down Syndrome was something that could not be completely ignored. I wish that I could say that I never had a second's doubt about how amazing little Liddy would be, but if I tried to say that I would be a liar. I worried. Constantly. Would she walk and talk? Would she ever be independent? Would I love her as much once she was placed in my arms as I did while she was tucked safe and sound in my ever growing stomach?
I truly thought I wasn't capable of being the mom of a child with "special needs". There were a thousand reasons that I believed that God had made a mistake in choosing me. I was too selfish, too impatient, too weak (and about a million more things). I prayed that someone somewhere had made a mistake. Instead of researching what it truly meant to have a child with Down Syndrome, I spent my time researching the percentage of wrong amnio test results.
Looking back, it was all ridiculous. Every single thought that went through my head, every worry that I held deep in the dark recesses of my broken heart. Most of them based on unconscious prejudices I never knew I had and outdated information handed to us which painted a very different picture than the reality.
There are a whole lot of things I wish I could tell the woman that I was before I became Liddy's mama. A whole lot of things I wish someone had told me. Almost a year of constant worry made me older, gave me a whole lot of grey hair, and made me shed bucketfuls of senseless tears.......
But that same year gave me great wisdom, changed who I am for the better, and taught me a whole lot about life.
So here it is....a short list of the things I would tell that me if I could travel back in time.
1. Don't be afraid. Let go of the fear completely. Trust that God knows what He's doing and has no intentions of harming you.
2. Your baby WILL walk and talk. She WILL do everything your other kids do, albeit on her own time schedule. You can fully expect her to live on her own (in fact, she's going to be so independent at a year old that you'll have a hard time imagining her NOT living alone someday...)
3. Even though you think you'll have a hard time adjusting to her time schedule ( due to your natural born impatience) you will actually enjoy the slower pace. It keeps your baby a baby just a little bit longer and allows you to fully enjoy each and every accomplishment fully while waiting on the next.
4. There is nothing (nothing) in this world more uplifting than her smile. That toothless grin, which spreads across her entire face, bringing out dimples and putting a twinkle in her big blue eyes, has the ability to make the worst day better, dry tears, and make all right in the world.
5. You, the person who has always shied away from rocking the boat, the one who always avoids conflict, will find yourself standing up on a variety of issues..many of which you never knew existed or never had a solid conviction about in the days before. You will advocate. You will educate. You will have no problem standing toe to toe with anyone who dares to even attempt to put your girl in a box or slap her with a label.
6. You will realize that Down Syndrome doesn't define who your daughter is. Its just a part of her...the same as big blue eyes, soft baby hair, and a bubbly personality. She isn't a syndrome. She's your child.
7. You didn't do anything to deserve this. You aren't being punished for some long forgotten sin. You were chosen. You were blessed beyond words.
8. She is just like every other child. Unique. With her own goals, her own personality, her own thoughts. She will push you to the very brink of sanity (just like your other kids) on bad days. Yet, with a simple smile or a giggle, all the frustration will soar out the window and you will bend over backwards to do anything to keep that smile on her face.
9. Your big kids are going to adore her. And because of her, they will be more compassionate, more understanding, and champions for the underdog. Your son will bring you to tears with how proud he is of her several times in the first year alone, all while never seeing anything different about her.
10. Love doesn't count chromosomes.
11. Your family will become closer than ever before. The hardship of being separated will bring a new appreciation for the privilege of each others' company.
12. She will keep you laughing. She will make you bust your buttons with pride. She will light up your day with a simple smile.
13. She will teach you more about life, about God, and about yourself than you could ever hope in a thousand years to teach her. She will make you stronger than you ever believed and kinder than you ever hoped.
14. You will be joining a group of the most amazing parents that walk the face of the Earth. Every single one different, with different points of view. We may not always agree on anything other than one thing....we love our kids....and that alone puts us all on the same side, that of our children.
15. That which you fear most will one day become the one thing in your life which had the greatest impact. The fear gives way in the face of the best thing that ever happened to you.....
I have read a whole lot of blog posts over the last several weeks about new prenatal screening tests and what those mean for the DS community. We're scared. Not necessarily of the test itself, but of how this test will impact the already dwindling numbers of new babies with a little extra being brought into this world....Personally, I am not against the test itself. But I DO have concerns that when faced with a positive result and a medical community that too quickly jumps on the "pursuit of perfection" bandwagon, more expecting parents will jump to the conclusion that their best option is to end the life that already exists. It makes me heart sick.
This month brings with it World Down Syndrome Day, the first since being acknowledged by the UN. In honor of this very special day (the day that 1 year ago I finally reached my tentative arms out to the DS community), my plan is for every post I do for the remainder of the month to be directed towards new parents. I am hoping against hope that my words and the pics of beautiful Liddy will touch a chord in those parents' hearts and allow them to see that although this journey may not be the one they imagined starting out, it is a journey well worth taking anyway.
Over the last three weeks, I have sent out a whole lot of copies of the questionnaire I created for my MGR project. As I started reading through the replies sent back to me, I was inspired anew by the stories and wisdom which filled my inbox. These words, written with love and care by other mamas, are simply too important to be filed away and hidden from the rest of the world. So...guess what. Those testimonies are going to be popping up right here over the next few weeks as well, starting tonight......
I asked these moms How has having a child with Down Syndrome changed your life? These are their replies:
Honestly, the only major adjustment I've had is going from having one child to two children. Andy is our second child and has made us a family of four. He is as charming as our older son and brings much joy to family and friends. We have become a part of the local Down syndrome community and have networked with families all over the world through Facebook and Babycenter.com.~Kathryn
Claire has opened our eyes to a whole different world we did not even know existed. We have met so many different wonderful people that we would have not met. My views of people with special needs are completely different. I feel I am a more compassionate person and will see things in a different manner. She has also brought our family closer together.~Amber
He has made both the lives of my husband and I so much better, and brighter. He has opened us up to the world around us and helped us to see the bigger picture. He has filled our home with laughter, joy and love...and quite honestly he is exactly the son I imagined before I had him~Tonya
Tonya and Camden
Our life has changed for the better. So much joy. We have learned and experienced so much over the past year, gained many new friends and are now so much more appreciative in what our typical son is capable of. Our outlook on life has changed and we are changed people, for the better. ~Shana
Shana and Gage
Wow, how has she not changed my life should be the question. Before Emily, the only things I knew about Ds were the stereotypicalH things most people know. I am not proud to say that I associated it with a flatter face, shorter stature, and an overall slowness to the person. Hearing those words, "your child has Down syndrome" scared the life out of me. I wasn't the "type" to raise a child with a disability. These were the thoughts racing through my head five minutes after having my entire world change. I then looked down at the beautiful angel in my arms and realized that she was perfect, that I was the type of person to raise this beautiful little girl, and that I would NEVER ask "why" again. Having Emily has taught us all that it really is about the journey and not the destination. Emily didn't sit up until she was almost a year old. She spent the first year of her life in and out of hospitals for one thing or another. She didn't start bearing weight on her legs until 18 months old. She took her first real steps at just shy of two. As a mom of seven others, all of whom walked well before ten months old, it was most assuredly a slower pace, but it was Emily's pace and that was all that mattered. She would get there in time and she taught me to sit back and enjoy the ride instead of thinking about the end destination.~Ange
Ange and Emily
Eugenio has changed each person that is part of my family. He has thought us so much, he changed our entire world. He introduced us to a new world that I didn’t have an idea it was out there. I have meet so many great people that if it wasn’t for him I don’t think I would of have the chance to meet them. I think the most important is things I have learned from him is: that I became a better person, to understand and believe in others, to appreciate each moment and each little thing that he and my other two kids do. And I think the most important to understand and respect everyone’s way to be. ~Adriana
Adriana and Eugenio
He brings so much joy to everyone, especially his sister. They are amazing together and have a bond I never did with my siblings. He has definitely opened our eyes to not taking things for granted, like baby milestones. He has brought us together with so many new and amazing friends in the Ds community. He makes me thankful for our health and more cautious about spreading germs to others. He has made his sister automatically accepting of kids who are different. He has made me want to be a better, healthier parent knowing that he may rely on me for certain things his whole life. He has opened our eyes to other special needs adoption situations and that we may pursue in the future. We weren't sure he would be a fit for our family, but now we can't imagine our lives without him.~Kristin
Kristin, Steve, Piper and Max
Jarrett is one of the best things to happen to our family! He makes us appreciate every step of a journey; to celebrate all accomplishments no matter how big or how small. He works so hard and has such perseverance. He makes us laugh every day--I love seeing him try to keep up with his brother. Anything Jackson does, he wants to do too--that provides such motivation to him! Every one loves him! They are drawn to his precious personality--he is such a social butterfly! He attends preschool 3 days a week and is such a hoot while he's there! He thinks of all the big boys are like Jackson--he gets in there with them and doesn't hesitate! :) His teachers love him and his therapists do too! We love him! He provides such joy and laughter to our family! His cackle is music to my ears! ~Jill
I am much less self centered, like most mothers I guess. I am totally in love with every child I meet as always, but our little ones with "a little something extra" totally make me happy. I will stalk strangers just to meet them!~Kimberly
Kimberly and Grace
I have become an advocate for my daughter and for others with DS and other disabilities. Piper is our 6th child with special needs, but this need to advocate and change the world is unique to being her mom. Our immediate family has grown closer...her siblings adore her and will do any thing to help her, or to help us help her. I have become a researcher, educating myself and questioning the experts. We have changed our eating habits - focusing on good nutrition...organic foods, etc so help maximize her health. We are starting a not-for-profit to help make a better future for Piper and others with DS.~Kristi
Kristi and Piper
She has brought joy - and perspective. We have redefined success, and I feel like we are better people for it. We are enjoying and celebrating the small things, cherishing our time together, and definitely laughing more. We are going against the grain of the ME culture we live in - and that is a good thing. :) My husband added that he is much less concerned with what people think about our kids (not trying to compete with everyone else) and we have healthier expectations of all our kids now.~Lisa
Having Owen has been a blessing in disguise. My husband and I prioritize so much more--is it worth it to have X, Y, Z in our lives? Do we really need this or that? I personally have learned to be more patient and seek out help from others, which has always been a struggle for me. I have learned a lot about time management too! I think I probably would have done or learned these things regardless of his diagnosis, but I've really had to stretch more because of him having DS.~Stephanie
She has brought so much joy and happiness into our life! My family was not so close before I had Paige – everyone fighting with everyone very stressful – But I truly think that Paige has brought us all closer, not sure if it is because she was born with DS or just something so sweet how could you go on fighting?? The first couple of months that she was born was hard to get through but now that she is 10 months old, life is just how we wanted it, a loving family of 3!!~Terra
Terra and Paige
He was not what we were expecting, we have learned a lot about Down Syndrome and also have learned to have a more positive outlook on life because of him. We cheer him on with every accomplishment he makes no matter how small. We have also learned that regardless of the fact that Rylan has Down Syndrome we would not trade him for a typical child because we believe this is the child we are supposed to have, and that we love him more than life itself.~Els
He has taught me to be more patient than I ever knew I could be, to take the time to appreciate every little thing and take nothing for granted, to never give up trying (he doesn't), and to smile even when things are tough. He has also taught me to be more understanding of those that may not be like everyone else...and to appreciate what it is that makes them different...this is something he has also taught other family members. ~Cathie
I have become a different person. A more selfless person. I am more aware of those struggling or those that are different. I have met people and befriended people I would have never known. I have conversations I would have never had. My faith in God has grown stronger. My admiration for Him deeper. I have become an advocate for Down syndrome.~Shannon
Shannon and Fiona
She has impacted our lives profusely. I was always the girl that said I could never raise a child with a disability. I was close minded and uncomfortable around people that had some type of special need, it wasn't what I would have chosen for my child. Now I am living the life. I am head over heels in love with my daughter and the extra chromosome she carries. She is perfectly made. Through her surgery & my pregnancy I developed an intense faith. I have a true deep understanding of having a relationship with Christ. I am more patient. I take nothing for granted. We work HARD for every.single.milestone & we celebrate them big! I used to assume that special needs meant no big dreams or goals, but now that I am a parent to a child with special needs I realize that I do have big goals & dreams for her, just as much as I do for my typical children. She has utterly changed every aspect of my life for the better and I am thankful because I am a much more caring, compassionate, understanding, and whole person because of her.~Annie
