God has blessed us with two amazing sons with Down Syndrome, Samuel biologically, and Benjamin through adoption. The light they bring to our family is immeasurable, and I hope you sense this as you read our story. Sometimes it is the hardest things in life that change your life for the best, and this had certainly been true for us. If Down Syndrome or special needs brought you to our blog, welcome! I hope these thoughts and resources can help you on your journey.
A letter for you on the day your baby is diagnosed "special."
Dear Mommy and Daddy of a new baby with special needs,
My name is Rachel, and our son Sam is nine years old and has Down Syndrome. He was our second child and first son. I was 29 when he was born, and he was born four weeks early(he was eager to meet us.) We found out at our 20-week ultrasound that there was a strong possibility he would have Down Syndrome, and we went through all some of the hard emotions that can come with this diagnosis: grief, numbness, guilt, and embarrassment. All of those feelings are normal, but they will not always be there. This is a journey and your emotions I promise over time will change to joy, love, acceptance and pride. I know things are dark right now, and it is hard to imagine that you will ever feel different, but I can testify that you will.
I have talked to many parents at special needs community events which have all been in your shoes and can also testify that joy will come, it just takes time. Your heart has been broken wide open and left so empty by the word meant to ease your pain, your child is special. Even though the wound is deep I have never heard of a parent dying from their child's diagnosis. However, you will need some heart surgery. What you can't see right now is that your heart was not as perfect as you had always thought it was. Your heart was broken and needed some work. If you will let him God will use this child to heal your broken heart, to sew up the wound, this diagnosis has caused and make your heart better than ever before. This surgery won't be fast and will not happen on an operating table; it will happen in everyday life. If you are finding out while still carrying your child, your first repairs will start to happen as you get on your knees and pray for your child. It will occur as you tell your doctors and genetic counselor that you choose life for your baby. It will happen as you read the stories of others who have walked this path before you. It will happen as you phone and email family and friends and open up to them, telling them that your child will be special.
Then more repairs than you can imagine will happen on the day that you meet your little one when you labor for hours and then finally look upon your beautiful baby for the first time. If you are finding out at the birth your baby has special needs; the hospital stay may be dark and even the weeks after but I promise each time you nurse that baby, allow him/her to fall asleep on your chest, breathe in the sweet newborn smell the repairs on your heart are already underway. Before you know it you will no longer feel like you are in surgery, the first smiles, the triumphant first crawl, and step, the first word will all be a part of the final sewing up of your broken heart. This surgery will take longer for some and shorter for others, but eventually, it will be over, and your heart will be stronger and healthier than ever before, and it will be able to lead you on the journey that will be your child's beautiful life. It will be that new heart that will give you the strength for the hard times that will come in the future.
Your genetic counselor or doctor may have painted a bleak picture of your child's future but guess what - they don't know your child and they don't know the power of the love of a parent for a child. You see love overcomes. It is dark now but the dawn is coming, and it will be a beautiful dawn. Your dreams for your child feel lost today but God will begin to show you that most of your dreams can stay intact and he will also give you new dreams. It may not feel like a gift right now, but on this hard day of your child's diagnosis, you are being given a gift because God is going to use this child to change you and grow you in ways you could never have imagined. He will be making you more beautiful. Your only job right now is to let go and give into God and your precious baby. You have been told today your child is "special" and I can not think of a better description, your child is special, so incredibly special but I am not talking about his intellectual ability or his medical conditions I am referring to your child's special heart. A special heart given to you, to change you and the world for the better. Now, climb up on that "operating table" of your new life and let this special heart start your healing.
With much love and understanding,
Sam's very proud Mama