We had the following letter today from my friend’s pastor, Steve. I have never met Steve. I have never spoken to him. He lives in California with his wife and grown up children. My friend Chloe is working with the church there, doing wonderful things.
Steve heard about us having little Asa, who has Down’s syndrome. His son, Mark, also has Down’s syndrome. He felt compelled to write to us, to encourage us and remind us of our important role in raising both our children. I have read this letter several times, and it is incredibly moving each time. Steve is so open and honest, and it felt like my heart was being pierced the first few times I read it, through blurred and tear stung eyes. I think this may be the turning point in me fully coming to terms with Asa having DS. It’s as though Steve has affirmed that any negative feelings I may have once had were valid at the time but don’t matter now – that in those first few weeks, that was probably the worst I felt about my baby. How things have changed! He has affirmed that it’s ok to be upset and confused about how our new life many look…
So Steve, a new friend across many miles, I publically thank you and pray that this letter may inspire or encourage others out there too. Even just one person, regardless of whether they have a child with DS or just a friend reading our updates.
Lizz & Jon,
Chloe just told me that you have had a baby with Down’s Syndrome several weeks ago. The subject came up because my son Mark was just in here making us laugh. Mark is 29 years old and also has Down’s. I asked her if I could write to you and tell you what our life has been like with our son. We went to the hospital not knowing anything could even possibly be wrong. Yet when I looked in my new son’s face I knew the truth. I was very upset but mostly just confused and did not know what to feel. We thought we had failed somehow or been forgotten by God. I was very numb and when people called to congratulate me I didn’t know what to think.
My pastor was out of town when Mark was born yet when he heard about our situation he called me on the phone. He said that God must have thought very highly of my wife and I to have given us such a gift as Mark. This has proven to be the most true statement we have ever heard in our life. The genetic specialist said, this baby will just require more love, and he will return more love to you than you will be able to give. A parent of a Down’s child came to the hospital and said, this right now is the worst you will ever feel about your baby having Down’s. These statements also have proven to be true.
Lizz and Jon, yesterday was my birthday and so many people told me that I have been a blessing to them; Chloe made my cry with the things she said to me. The reason I tell you these things is that who I am and what I do, is only because I have Mark in my life. I am a better man, I have love for others, my other children are great people, I have a soft heart, even my fathering of my church people is because of him. I can cry in front of people because of my son and his unconditional love in my life. Hold on to each other and love this child more. Learn from your baby and let God have His way in you through this time. When you hurt, love more and you will one day testify as my wife and I have that we shudder to think who we would be today if it wasn’t for Mark in our lives. When I pray I say thank you for such a gift as this boy. Lizz and Jon, God must have thought very highly of you to have given you such a gift. Thank Him and cherish and love your child and more love will fall back upon you than you can possibly imagine.
Pastor Steve Orsillo