"Raising a baby with Down syndrome is the same as raising a baby without Down syndrome. You'll get to all the milestones that a "typical" (non-Down syndrome) baby will get to, its just on a different timeline."
Having four children of his own, one of whom having Down syndrome, his perspective was gold to me, and I have come back to his words time and time again, and know I will continue to revisit them in the future. Remember what I said a few blogs ago? "You don't know what you don't know." Yeah. That.
As much as the unknown of what to expect from Down syndrome was challenging, Mildred is also our first child and so there was a constant questioning of what normal is. And not only what is normal for Down syndrome development, but also what is normal for babies in general. It was a constant tangle of questioning what was typical, what was Down syndrome, and where the distinction was between the two. I know I must have driven my sister-in-law crazy asking questions about Timothy (my nephew who has Down syndrome) because I was constantly wanting clarification about what was "a DS thing" and what wasn't. She was so patient and gentle, even though she may have been frustrated or offended, she never showed it. I hope I have offered the same graciousness to the people in my life (myself included) wrestling with those questions.
It is this desire to put everything in a box, to label it and know how it is going to proceed - what it is going to look like. It's so confusing! And I think, perhaps because I was a first time parent, there was extra confusion because I didn't have the ability to anticipate what was next (although I will say that I am grateful, and God knew what He was doing). I found that I was (mostly) able to feel very optimistic and excited about the growth that Millie was making, and the ways she was advancing. Every day I was floored by her, and even though our expectations were high, it was amazing to see what she was capable of time and time again!
...until I was around other people, especially other babies.
Four of my very best friends and I all had babies within (nearly) the same year of each other, and 4 of the 5 of us gave birth within a 6 week window of each other. (It's super cool, I totally recommend being pregnant at the same time as your besties!) What that meant for me, however, was a built in measuring stick every time we were together. My friends are really the best kind of women, and friends, and I don't know that they ever realized this was happening, I know I wasn't able to articulate it at the time. Being around other children that were the same age as Mildred, who didn't have Down syndrome, felt like shining a massive spotlight on all of the ways Millie was different, or behind.
I want to be very clear here: not one time did ANYONE in my life express anything other than support, love, and pride at all of the progress Mildred was making (and has made). Not one time did anyone compare milestones as a means of measurement of superiority, I am blessed beyond measure by the support in my life, but that doesn't mean the comparison monster didn't rear his ugly head in my own mind and heart. The strange thing about the whole experience was that I would feel almost as if everything was "normal" and nothing was wrong at all, until we were out in public and there were other babies to compare Mildred's development to. In public, next to other kids her age, it was if all the secrets were exposed and I felt vulnerable.
All of this goes to show how much value and worth we (I) still attribute to accomplishment, ability, achievement. Having a child with Down syndrome has challenged my concern with the opinions of others, and my anxiety about what other people are thinking of me. I have had to really look at an evaluate my own ability to love unconditionally, and try to refine the conditions that actually are at work on the measure to which I am willing to love.
Mildred challenges me.
She challenges the deepest parts of me.
This challenge comes not from the conscious choice to learn how to love this "imperfect" person; but rather, from the perfection that she is and the way that it challenges, stretches, perfects, the imperfections in me.
My prayer is that, through being Mildred's Mama, I can learn to love unconditionally, that I can see with eyes that are so consumed by love, that they don't seek to measure.
Tomorrow: Range of Development for people with Down Syndrome, and sharing Millie's progress in meeting those milestones.
Go Irish!
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