more about a boy

Since my last post about Elliott, he has mastered walking, has added many new words to his vocabulary and has begun displaying an understanding of concepts and processes that he either had no interest in or no comprehension of previously. Best of all, he does not have the serious genetic condition our neurologist feared he might. Thank God for that.

The jury is still out on whether there is a medical reason for Elliott's delays or if he is just on his own developmental trajectory. The biggest struggle for us had been deciding how actively and urgently to pursue answers. Our impulse is to stay out of all the doctor's offices to avoid unnecessary testing, medications and expense and to focus on playing and therapies instead. But if there is a medical issue, we would want to know. It is such a fine line to walk.

In the meantime, we have learned some wonderful lessons and been blessed with gifts and insights that never would have come our way. Here are just a few:

:: Elliott attends a music therapy class with 4-6 other developmentally delayed two year olds. During the 50 minute class, either Andrew or I wait with the other moms and listen while these more vetted parents talk about their kids. One mom has a daughter with down syndrome and autism. She is nearly three and can't walk, can't feed herself, barely speaks and doesn't make eye contact. She is scheduled for multiple surgeries as she gets older. The amount of therapy, medical attention and care she needs is mind-boggling. It is not surprising that her mom always looks tired and sad. But last week this mom told the group about an important research study her daughter's primary care doctor had emailed her. Apparently people with Down Syndrome do not get cancer tumors. It has something to do with the way that their extra chromosome affects protein production. Knowing this, medical researchers are working on creating a vaccination from the cells of kids with Down Syndrome that could some day potentially prevent cancer tumors from forming in an otherwise healthy individual. As this mom told us these findings, her eyes welled up with tears. "Since I learned my daughter had down syndrome, I have prayed that I would know why she was given to me," she said. "Day to day is so hard, but this helps confirm that she's here for an important reason." We really do see through a glass darkly this side of heaven. It's these glimpses, I think, that remind us that there is one.

:: One of our neighbors has a daughter my age whose son has had some serious medical and developmental issues. Although she has serious medical troubles of her own and doesn't get around very well, this neighbor has always been incredibly kind to our family, bringing us loads of fruit from her apple trees, books from her library and gifts for our kids' first Christmases and birthdays. After a long phone conversation about some of Elliott's delays, this neighbor hand wrote me an eight page letter (on legal paper) of strategies and advice on being an advocate for your child as discovered through her daughter's experience. She cited numerous resources, warned of pitfalls, and suggested many ideas of way to gather information and share it with practitioners. She didn't have to do this. In fact, I can think of no reason why she should. It was such a generous and loving act of support and encouragement that after I finished the note, I just sat and cried. The world is full of beautiful people. I am grateful for the reminder.

:: Something I learned while walking with my cousin through her husband's battle with cancer: a serious illness or (in the case of our life with Elliott) a disorder or disability opens your eyes to injustices in the medical, research and insurance worlds as well as the private and public care and education sectors that you would never otherwise know or maybe even care about. Listening to the moms share their stories at music therapy every Wednesday morning and navigating this new territory on our own, I am discovering this: the vast majority of people making decisions about healthcare and early childhood intervention programs and public schooling are not the people whose kids need the care and the therapies and the extra help. Because of this, the people who love the patient - whether it be my incredible cousin fighting to get the best treatments and care for her husband or the parents of a child with autism fighting to get the best answers for their child - are critical advocates. Because of these passionate people, new policies are born, better research is begun and good programs are saved. My head swims when I sit and listen because the problems with our flawed systems seem insurmountable, and it's our precious family members who suffer. But little by little the spouses and parents who fight tooth and nail get things done. Little by little we make progress. It's hard. It hurts. It doesn't make sense. And for most, the glimpses of joy are few and far between. But these are the people making the difference for everyone simply because their love is so strong.