World Down Syndrome Day 2018

 

For World Down Syndrome Day, the March for Life Instagram was “taken over” by Margaret Black and her sweet son, Sebastian. Check out the posts below for a look into their lives. You can also ready more about Margaret and her advocacy for individuals with Down Syndrome HERE.

PART 1: “Becoming a mom to a child with Down syndrome is quite an experience. It is full of so many emotions; good, scary, doubtful, disbelief, and fear. Most women who are expecting are “expecting” a healthy child who will develop into little prodigies that change the world. They want to see their child excel in school, on the field throughout a sports career, and become self-confident individuals that can depend on themselves. This is a great dream for any parent, any mother. But what about those mothers who hear the words, “Your child may have Down Syndrome,” or, “Your child appears to have characteristics of Down Syndrome.” Then what?⠀ I was 32 when I gave birth to Sebastian. I was never expecting this kind of scenario for myself, my family, or my child. I had a great pregnancy, an easy delivery, but then there was the suspicion of Down Syndrome. In only a few moments, before I could begin to even allow my emotions of elation and joy fill my heart, those words penetrated deep and got to the center of my heart first. I was still lying on the bed, adjusting to the fact the contractions were over, hoping Sebastian wouldn’t need supplemental oxygen at my arms much longer when I handed him to the NICU team and then I heard those words.” @margaret_holymotherhood #wdsd18 #worlddownsyndromeday #downsyndrome #prolife

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PART 2: “Boom. The shock was real. The disbelief was real. The questions…. The unknown, was real. Of course, this is exactly how most mothers I come to learn, feel too, because most of us are not educated well on this diagnosis. And it is a shame. But, in that moment, I had hope. As a Catholic woman, I immediately turned to God and told him to talk to me. I needed him to tell me something so that my heart could be at peace, and I could find my trust again in the Lord in this situation.⠀ I had no idea that he would tell me so clearly, exactly what I needed to hear. I had no idea where it would come from. But then, a powerful sensation within my chest told me to look in His Word at the time Sebastian was born. I was surprised. How would this make sense? I quickly asked my midwife what time he was born, and she said, “4:17” (pm).⠀ My sister in law immediately began searching Scripture, and found only one place where anything made sense. It was 2 Corinthians 4:17: “ For this light, momentary affliction is preparing for us an eternal weight of glory beyond all comparison.” I knew immediately what the Lord was asking of me, reminding me, and telling me. It was the fact that even though this seemed like an unfortunate and difficult situation, it would bring about great glory for God, and I must trust Him, and was instantly at peace, and quiet in my heart. I was able to accept this calling to raise one of His angels very well, and I became honored. Yes, honored.” @margaret_holymotherhood #wdsd18 #worlddownsyndromeday #downsyndrome #prolife

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PART 3: “I looked at Sebastian one last time as I held him, before the NICU staff would take him to the NICU for however long that’d be, and I saw clearly in his little round face that the Down Syndrome was very apparent. I broke down after holding back tears. I knew in my heart that this little baby needed my full love, affection, kindness, and faith in him. I quickly through the arms of my heart up to God, and asked him to take away any stain to the purest love for Sebastian away; that He would make my love for Sebastian just like His. I didn’t want to miss a single moment of the JOY that I knew would come. I wasn’t going to allow my lack of knowledge or education on his diagnosis ruin the love that Sebastian deserved. I have never looked back, except to thank God with all my heart, for giving me that small token of his assurance, and the love for Sebastian I wouldn’t change for the world. ⠀ ⠀ The NICU stay is difficult. It is heart wrenching. But no child is ever perfect or without trials. Many are misinformed and believed that a child with extra needs and/or Down syndrome are at a “life” disadvantage. Many believe they will suffer all their lives, that they will not know joy or happiness. It’s such a lie. One thing I stated very early on, was this fact. You do not have to be a rocket scientist to have value to your life or to be successful. God creates many kinds of people: some are ingenious people, some are laborers of the trade, some are business oriented, some are multimillion dollar stars, some are prayer warriors, some are clergy members, saints, and some, are merely gifts of love that remind us what life is really all about; to share with us what unconditional love truly is. Sebastian is one of these people. And he is happy. And he loves life. He is active, and playful, and his laugh and smile are enough to melt your toughest heart on a bad day. Every single trial that brings about a new milestone is worth it. Every. Single. One.” #WDSD18 #worlddownsyndromeday #downsyndrome #prolife #pregnancy

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PART 4: “My life is so much more fulfilling because of Sebastian and I am so glad that God has blessed us with him. If anything ever happened to him, my heart would crumble and a piece would die. He is a breathing force of life to mine. He gives me a reason to try as hard as he does on any given day. He loves to share his friendly fist bump with anyone who’s willing to give one back. ⠀ ⠀ Watching Sebastian grow has been such a miracle for me to experience every day. His first smile, his first time holding up his head, sitting up, crawling, walking, saying momma. . . have all meant so much more to me than I could have ever thought. My other kids just “did” those things. But, I wonder if we often take for granted those moments. Sebastian taught me to appreciate every single achievement. I’ve never been so excited to watch him do his thing. He keeps life interesting and rewarding on so many levels for me. I love his cuddles, his hugs, his love. I love how excited he is when he accomplishes something he tries so hard to do!” #worlddownsyndromeday #WDSD18 #downsyndrome #family #prolife #pregnancy ⠀

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PART 5: “As a mother to another mother contemplating abortion of their baby with DS, I’m asking you to have faith in your child. Allow this child the opportunity to shine for you. If you pour all your heart into this baby, the amount of love you get back with be 100-fold, and you will find a joyful and fulfilling adventure ahead! The support is out there, come and find us! As one mother among thousands in the same boat with this diagnosis, we offer great support to you. You are not alone. Step aboard the happy train! As a mother to other mothers who aren’t as well educated on Down Syndrome, I’d offer this token: trust the mothers and fathers and families who live this journey every day. Being fearful and accepting only half truths and deceptions of what DS really is will leave you full of uncertainty even more. Educate yourselves well with the truth of those who have benefitted from the joys these babies have brought into our lives. Trust us. We are the most accurate testimonies! I cannot say enough here, so that is why I am writing a book for all mommas out there to have access to the truth and detailed life with a child with Down Syndrome and to lay your worries and fears to rest so that you too, can have the same confidence I had in the very beginning of my journey. I want to help you turn those fears into joyful fulfilment!” #WDSD18 #worlddownsyndromeday #downsyndrome

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PART 6: “When my husband and I first had to tell our other 7 children at home that Sebastian had down syndrome, I wasn’t too worried about how they’d respond. I was more concerned with how other relatives or friends may react to the news. However, I had such a wonderful support system -which was a true gift- and our experience was pretty great there. We also the BEST NICU nurses that loved on us and our family and Sebastian especially. It was agonizing for the kids though, as they couldn’t really meet Sebastian until he came home. When we told them about what Down Syndrome was, in their innocent way, they said, “So what if he has an extra chromosome. He’s still a baby!” And that right there is the greatest truth to be realized. He was still a baby that his siblings just wanted to get their hands on and love. These kiddos were so squirmy and excited to hold their new brother they couldn’t contain it. It was so beautiful a thing! The love Sebastian had from them was pure and honest. No bias to diagnosis, no worries, no nothing. They simply saw their brother as a baby who deserved a million love squeezes and even more kissies. If only the rest of us could share that precious enthusiasm for life of a baby with DS . . .” #WDSD18 #downsyndrome

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PART 7: “Having Sebastian join a family of such large scale has been a real benefit to him. With seven older siblings, he had someone to teach him one-on-one constantly. When we began Early Intervention (EI) and met with his PT, Marlo, for the first time, and the first thing she said to me was, “I know you just had a baby, and you’re going to hate me for saying this, but you need to have another one.” I was seriously perplexed for a moment, and looked at her and laughed. We were talking about a ninth child? After just having one with DS? Yes. She meant every word. She talked honestly with me about what would be best for Sebastian and his growth and development. I went through several months learning to trust her, and watched her with Sebastian, watching her bring Sebastian into crossing milestones, and strengthening him in ways that astounded me. Her wisdom was the real deal. So, right after Sebastian turned one, we got pregnant. Sebastian was going to have a little brother. And if any kiddo deserved to be a big brother it was Sebastian. Cajetan joined our family in the summer just before Sebastian would turn two. And this little brother would change everything for Sebastian. While the older kids pulled Sebastian and sometimes went a mile a minute too fast for him, babied him, etc., Cajetan was a playmate of equal position to his own who would push him. That is exactly what he did for Sebastian.” #WDSD18 #downsyndrome #worlddownsyndromeday

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PART 9: “I feel so blessed to have been able to help encourage multiple mothers via the internet and social media and in my actual life to see past the fear-factor of the down syndrome diagnosis and lead them into peace, contentment and joy. And a few of these moms have agreed to contribute to my book to help other moms, too, in the same situation! It is so much more encouraging to talk to moms that have been there, done that. I could have never imagined the promise of the Lord at 4:17 pm on the day of Sebastian’s birth would turn out like this. I see that now. With the intercession of Our Blessed Mother, Sebastian is now rocking this diagnosis. It isn’t what he IS, it’s just a part of what makes him unique. We wouldn’t change it for the world. He will always be in the hearts of those he’s touched. Sebastian is a great kid. He has brought so much incredible joy into our lives and redirected the obvious. I only wish more and more each day that parents can learn to also redirect their own ideas of what Down Syndrome really is, and what its isn’t. Having a child with DS isn’t a burden, but a joy. These children are the diamonds amidst mountains of coal. They are beautiful beyond measure. If you are a pregnant mother, with a diagnosis of Down syndrome for your baby, allow yourself the pleasure of blessing your baby with having faith in his gift and potential. Dispel your fears by joining the Down Syndrome community; don’t run from it, embrace it. We are here to help you every step of the way. God bless you!” – @margaret_holymotherhood #wdsd18 #downsyndrome #prolife

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