A Mother’s Heart
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. 
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, andfound 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. 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. 
Holding Sebastian one last time before heading to NICU
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.
Finding true love within what we coin as a “disability” begins with surrendering what you “think” is perfect and should be perfect, to what simply is and loving it with all your heart. Once I refused to allow my fear control that love, the doors to this life were swung wide open with the greatest joy I have yet to see as a parent. I’m not saying that my other children do not provide this for my mother’s heart, but when you see how hard Sebastian has to work to reach his goals, no one tried harder than him, and so much is to be appreciated and celebrated! And I’ll add this: It is so entertaining and exciting to watch him show us he proves the stigma wrong every day. The potential is there. The motivation is there. We merely have to fuel it. Have faith in your child! Be excited for him! Embrace the adventure knowing you are his world! It’s ok to have someone depend on you. It may take a little longer, but the journey is still actively happening! Milestones can be reached!
Momma's Pride and Joy
My life is so much more fulfilling because of Sebastian and Iam 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!
Sebastian’s first plane ride and the stewardess was so moved by his very sweetness she was thankful for meeting him, and gave him wings.
Sebastian is our little angel 
He loves to be read to and loves his books! He wants to learn! And he is so smart!
Sebastian has a fanpage on Facebook!
Seeing these little handprints on the school wall after he joined PreK made me cry. I was so incredibly PROUD of him. My life would be so very less "full" without what these "Little Hands" have brought into my life. It is why I fight so hard to #SaveBabieswithDownSyndrome Parents just don’t realize the gift in a child with DS.
Sebastian at his very first dental checkup. Such a good boy.
This was my very first March For Life. Our sign got so much attention. Sebastian's precious face shows the value of life with DS. #SaveBabieswithDownSyndrome
Our little Stud Muffin
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!
Beautiful post! I can't wait to buy your book!
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