Meeting the milestones

Mildred was 6 months old when we traveled to Stanford, CA for Thanksgiving with the O's and the usual obligatory family holiday tailgater for the Stanford/Notre Dame game (Go Irish!). It was the first time my brother-in-law was able to meet Mildred, and I'll never forget what he told me:

"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!

Reminding Me Why

I was silent for a year for many, many reasons - the biggest of which was probably just exhaustion (ha!), but the words and ideas have been forming over the past several weeks. This move has created a renewed sense of wanting to invest time and energy into this corner of the internets, and a desire to push past my tiredness, laziness, and perfectionism, in order to actually publish posts. I think I initially felt that it would be a way to update friends and family back home on life and the goings on, but this morning I was reminded of the bigger picture, and it is one that I can't avoid or ignore.

Advocacy.
Education.

Understanding.

Down Syndrome.

One of my favorite sayings over the past several months has been: "You don't know what you don't know." I didn't know that I was going to have a baby with Down Syndrome. I didn't know that I was going to be ushered into this group of people who have been impacted by something so small as an extra chromosome. I didn't know that I would (whether I wanted to or not) become a walking billboard for what having a child with Down Syndrome would be like. And you know what? I actually didn't know very much about Down Syndrome. And that's okay! You don't know what you don't know until you realize there's a gap in knowledge and understanding that needs to be filled. 

Social media plays an important role in that awareness, and it impacted my process of grieving and acceptance in the beginning of our journey (a story I'll tell another time), but today I was reminded of the responsibility I have been given. One of my all time fave IG celebs is a 6 year old girl with Down Syndrome named Chloe (Coco for short) who's life is documented by her mom on the IG account @lilcocobea. She is sassy as all get out, and loves to sing, dance, cook, and shoot her own make-up tutorials (no I'm not joking). This morning's post on her account was dedicated to a couple that had viewed Coco's account while they were in the parking lot of an abortion clinic because they had received a diagnosis of Down Syndrome for their child and they had decided it was the best option for them. Lilcocobea showed them, just by being herself and living her life, that maybe DS wasn't so scary, and gave them the courage to choose life for their baby. 

This is profound on many levels, most of which, I am sure, are not lost on you, dear readers. However there is a component to this that I never considered before I was standing where I am now, and that is: relief that there will be one more person in this world who will be like my Mildred Pearl. This is one more step toward allowing Mildred to grow up in a world where she may actually be able to have friends with the same number of chromosomes that she has. There is more to say on this subject, but I'll leave it there for now.

So, here is my opportunity to teach myself (I still am learning EVERY DAY about Down Syndrome), and others, about my daughter, and others in our beloved Trisomy 21 Club.

There is a blogging challenge for the month of October to write (and publish) a post for every day of the month of October. October also happens to be Down Syndrome Awareness month. So I have decided to share something about Down Syndrome every day for the month of October. Now, I have some ideas (and pictures... I'm sure I can scrounge up some pictures ;) to share. And I have some subjects that I've been meaning to research about for my own personal growth (relating specifically to DS and awareness), but that covers about 6 posts. So, although I'm sure only a handful of people would complain about daily Mildred pics ("Millie Mail" as I call it when I send them to the grandparents), I want to know what you have questions about!

What do you want to know?

Are you wondering about anything as you've been following my posts?
Do you have questions about terminology/ability/delays/etc.?

Have you seen or heard something from somewhere and you're wondering if its true?

I want to know!
Don't be shy. Don't be worried about offending. Don't be embarassed.

We don't know what we don't know, until we do. And how will we know more if we don't have the courage to ask? ASK! You can leave questions in comments, or private message me, or text me, whatever works best for you.

You are Millie's tribe, she needs you too.

-M