The local midwife called me wanting to know if I would be willing to meet with a mother who had just had a daughter with Down Syndrome.
“I’ll be there!” I said, and within days, I was oogling over the beautiful wee treasure she presented to me. “She’s so beautiful!”
The mother seemed very tentative, but I think she was happy to meet Ruby. Ruby is two years old. She is crawling, playing, curious, in and out of rooms with doors to happily close behind her…and usually very, very happy.
Do you ever feel like it’s all your fault?
Well, the thought did cross my mind once or twice. But if I were to take fault for the extra chromosome my baby carried, then I would have to take credit for the normal set my other children have. God is the one who crafted the baby within my womb; it is His handwork. I was simply a trusting, willing, vessel. And I don’t believe the Lord makes mistakes, but allows only what is for my good.
What programs did you do?
I was overwhelmed with the amount of “help” that inundated me within hours of Ruby’s birth. People were already talking about wonderful public (read: government sponsored by tax dollars) classes and programs and how, when Ruby turned three, she would go onto her very own special school bus. I am thankful I listened to my mother’s intuition and just simply said, often and quite clearly, “No, thank you, right now we are just working on nursing.” And it WAS work; she never nursed easily, but I was stubborn and persistant, knowing that breastmilk was going to be the very best for her, not running her all over town to have strangers cuddle and “stimulate” her.
Now we are involved with a neurodevelopmentalist who evaluates her three times a year, sets up an individualized program just for Ruby, and trains us (her parents) how to do the activities. Our FAMILY is Ruby’s team of therapists. The bus can go right on by, see ya buh-bye.
Do you worry about persecution?
Well, yes and no. Most folks will simply just look on and smile, or give a sympathetic hug, or share about their own child or relative with a disability. Just like when I garner attention with my six children about me, people will read my own face to see how wonderful or how awful my life really is. I smile a lot. I have six reasons to. But I do know that people, despite the philosophy d’jour, have real sin and ugliness in their hearts, and that out of the heart comes who they really are. I can’t (praise the Lord!) read their thoughts. I can only love through Jesus Christ, and without Him working in the lives of others, I don’t really expect wholesome acceptance of Ruby, even if they hide it well.
What about Ruby’s feelings?
She will probably be hurt. But we have all been hurt. You know, Ruby is blessed. She will know she is different, and it is a physical, obvious trait. But a whole lot of people walking the broad road don’t think they’re just as handicapped, just as fallen short of the way it ought to be, and in need of repair. The outside shell may look good, but the inside is a rot. We all have “special needs.”
What about Ruby’s future?
I have about as much control over her future as I do any of my children’s or even my own. Ultimately it is in God’s hands, and we just try to glorify Him in our thoughts, words and deeds while we are here. Only He knows when death will visit any of us, and it will visit ALL of us (unless He comes soon!!). Currently my hope and mindset is that Ruby will be able to take care of herself independently, but that either her parents or her siblings will be her protectors. But today we’re working on today.
The point is……enjoy and love and teach your babies, every minute. Your time with them is shorter than you think. I’ve had friends bury children; we are not due a whole lifetime with any of them. Just because you bare a child without a disability does not mean his or her heart is clean, and does not mean *whew!* now he or she will grow up without suffering a major tragedy. Trust your motherly instincts and keep them close (even, *gasp!*, “sheltering” them).
Ruby is not a burden. I am blessed.