There are 2 things I’ve been meaning to write about, but I’ve been waiting until I had time to do it “right.” The Flylady would tell me I’m letting my perfectionism get in the way of accomplishing anything . . . so I’m putting some thoughts down even though I don’t have time to think through everything and write as carefully and thoroughly as I’d like to . . . .
With Matthew, the miracles just keep coming! And even though I am still amazed by them, and so very thankful, I can’t say they surprise me anymore. Matthew just attracts miracles. Let me fill you in on the latest:
A couple weeks ago, the boys and I were out for a walk on our usual route. A couple with their dog was walking the other direction, waved to us and said the usual polite “hi,” then warned us about a large bee hive in a tree right in front of us (It was HUGE!), advising us to either move to the other side of the street or turn around. We were only 2 blocks from our usual turn-around anyway (and I am VERY scared of bees!), so we just turned around. So, now this couple and I were walking the same direction at about the same pace, and Micah kept turning around saying, “Mommy, there’s a puppy dog! They have a dog!”
So, the nice couple came closer and let Micah see the dog. We ended up talking more than one usually talks to strangers they meet on a walk, and the couple was asking me how long we’d lived in Yakima, what our respective occupations were, etc. When I mentioned that Aaron was a doctor, they said, “Oh, I bet all that medical knowledge has come in handy with having kids!” (How did they know??) I said, “Oh yes. Especially with our youngest,” and I mentioned that he recently had heart surgery, and shared a little bit about his original prognosis and the miracle he is. We’ve always felt that Matthew’s story is meant to be shared, and we haven’t held back with anyone who seems genuinely interested. I didn’t mention anything about his Down Syndrome, though. The woman peeked in the stroller to see the “miracle baby,” and said with absolute delight, “He has Down Syndrome!” (She used the same tone that Micah used to say, “They have a puppy!”)
I’ve learned that the only people that say it like that are people who have one. She said, “Ours is 26. He’s home with his caregiver right now.” I said, “We should talk,” and they ended up walking me almost all the way home. We exchanged phone numbers, and I gave them the blog address. At the end of the walk, the woman said, “We know a family you need to meet. They have a 3-year old son and a 9-month old son with Down’s.” I gave them permission to pass along my phone number, and really hoped they would. We were anxious to meet another family so similar to ours, and we are at a point where we really needed someone to share experiences, hopes, helpful hints, and struggles with someone who really understood. We have also been worried about Matthew not knowing anyone like him – having any friends who would understand him. With appx. 92% of women choosing abortion when they learn the baby they carry has Down’s, we are honestly worried that there won’t be a lot of kids like Matthew around.
I will use initials since I don’t have permission to use names, but L. called the very next day. She said she read the blog, and our baby boys are only 2 weeks apart. She said that they, too, had been praying to meet a young family with a Down’s baby, and that the previous night she had been reading her Bible and praying with the verses from Matthew . . . the same ones that I had posted on the blog. We talked for a long time, and met the next day for a play date with just the moms and boys. Then we met the next week for dinner so the Dads could meet, too.
L. was gracious enough to share what she’s learned from her research and reading, and has loaned me wonderful books to read. They are a further ahead on their journey of raising their little boy, who was blessed to have no major medical problems or hospitalizations. We are just beginning to read, research, and learn what we need to learn in order to raise Matthew, because for 6 months we thought he was dying, and then the next 2 months were taken up by surgeries and recovery . . . so L. is a wonderful resource for me in this area. She has also learned a lot of the ins and outs of the different therapies and early intervention programs. I could go on and on, but I think we will have a lot more to share with this family in the future.
This brings me to topic #2.
L. and I talked about our expectations for our little ones, and how frustrating it is when others put limits on our children – only expecting a certain level of achievement or assuming that certain accomplishments are simply out of reach for our little guys who happen to have an extra chromosome. We both get frustrated when we hear, “Oh, well he’ll never . . . .” or “Matthew won’t be able to . . . ” Just give them a chance! It is unfair to put those kinds of limits on any baby, even one with Down’s. Besides, if Matthew can grow an aorta and a left ventricle, fix his kidneys and club feet on his own, then patch his own VSD . . . who are we to put any limits on the kid? I will write a lot more on this someday, but for now just let me share what L. shared with me. A book called “Gifts,” edited by Kathyryn Lynard Soper. A collection of 63 “Reflections on How Children with Down Syndrome Enrich Their Lives.” It is exactly what I needed, and I haven’t been able to read more than 3 or 4 pages at a time without crying. I find myself saying, “That’s exactly how I feel!” with almost every story.
From page 28, Bryan’s story:
“Doctors deal with facts, but children are much more than a collection of facts. They defy expectations; they do their own thing. We must never limit them based on some set of statistics, or define them based on a diagnosis. The same goes for mothers. The same goes for everyone.”
It’s so reassuring to hear stories from other moms who felt the same things I’ve been feeling, and who’ve dealt with similar frustrations and challenges, but who also see the incredible beauty in their child and share the blessings their child has brought into their lives.
Thank you, Lord, for more miracles.