If I Could Do it Again

Would I do anything differently? Ohhh yeah

I’m three and a half years into this Down Syndrome parenting thing, and to say I’ve learned a lot is a gross understatement. I knew next to nothing going into it, and I was in no way prepared enough. That kinda makes it sound a lot scarier than it really is/was, though. Truly, I was scared, as I think most parents are upon receiving such a diagnosis for their child, but there was no need for it. Now I know this, and maybe I can help others who are in a similar place today. So here are the things I would do differently if I could.

NICU Betsy, 15 days old

I wouldn’t have stressed about it so much. I’ve never been great at handling stress in the first place, but the level of it that I had going on during my pregnancy was ridiculous. I was in denial about the diagnosis (although it wasn’t an official diagnosis as I didn’t have an amniocentisis—but they told me there was a 96% chance of Down Syndrome) and I was hoping and praying for the 4%. My husband Ian and I didn’t really talk about it with anyone for awhile, cos we wanted to process it ourselves first. That made sense at the time, but I wish we had talked to family about it sooner. It felt like such a heavy weight for us to bear alone, and once I shared it with my parents and daughter, their love and support brought so much emotional relief. Besides the whole diagnosis and being pregnant thing, I had also just turned forty and we were newly married, so there was also the stress of combining our two households. I was working full time as well (I actually went into labor on the job—my water broke like something straight out of a sitcom). I should have been looking into ways to calm myself and regulate my nervous system. I should have gotten more information and done more research. I should have looked into resources and found more Down Syndrome parents. I could have had a much easier pregnancy.

Someone shared a video with me on Instagram that helped me out a lot, and at this point I can’t remember whether I saw it in the late stages of my pregnancy or in the first few months having Betsy at home. It’s of a mother being interviewed by her daughter who has Down Syndrome, and the sentiments expressed by the mom are just spot on. This video always makes me teary-eyed.

I wish I had seen more videos like this earlier on, that I had familiarized myself with the Down Syndrome community online—then I would have had a better glimpse of the beautiful world we were stepping into. And it truly is a beautiful world.

I would have advocated more adamantly for both myself and Betsy in the hospital. She was born by C-section and taken from me immediately so they could run all kinds of tests (they had seen her heart and digestion defects via ultrasounds during my pregnancy) and get her settled in the NICU. I was immediately bombarded by a lactation consultant even though I was still violently shaking from the refreshed epidural, and then I had to eat something and get settled into a room, so I didn’t even get to meet Betsy until six hours later. I definitely didn’t get to hold her right away—I wanted to, but didn’t ask because she was covered in wires and tubes and I didn’t think I could. Some nurse finally asked me if I wanted to, and that’s what made it happen, and even then no one brought up doing skin-to-skin. I had to wear a hospital gown over my clothes to be allowed to hold her at all, so I didn’t think to ask about that, either. All those tubes and wires on her? No one told me what they were. The nurses seemed to assume that you already knew because you didn’t ask, and I didn’t know I needed to ask. When Betsy had her abdominal surgery at two days old, they installed a g-tube in her stomach so she could receive meds and milk—no one told me about that, either. Not until it was pretty much time for her to go home and they were giving me a crash course on how to use it. I also wish I had stayed at the Ronald McDonald House while she was in NICU, because we lived about 90 minutes from the hospital and I had to drive (or be driven there until I was cleared to drive myself post C-section) every day to see her, and usually only got to spend a hour or two there per day. I missed out on so much bonding time with my newborn girl during those three weeks, and it still hurts to think about. (When she had her heart surgery six months later, I did stay at Ronald McDonald House and I am so glad that I did.)

I would have gotten Betsy into early intervention therapies right away. There were various reasons why we didn’t get things going, from clashing with our first pediatrician to home work schedules, but anyway, it didn’t happen. When Ian discovered Gigi’s Playhouse last summer, that got us involved in a weekly Music Therapy group session (and introduced us to a wonderful community). It also led to us enrolling her in their Speech Therapy program, and we have seen great results from that. But I wish we had done it sooner, and the physical and occupational therapies, too. Kids with Down Syndrome are already developmentally delayed, but I feel like she would be much further along if we’d started sooner. It’s hard not to play the comparison game, even knowing how Betsy is pretty much determined to do things on her own timeline anyway. She is now three and a half, says just a handful of words (and only when she feels like it), and she’s not standing on her own or walking. I can’t help but think she would be doing all the things already if she had had the therapies from the start.

I would have prioritized my own well-being and mental health better. In the early days, there were times I might not get a chance to have a shower for 2 or 3 days. Now I consider showers to be non-negotiable—I find a way to make sure I get one every day. Before, I never asked for help from friends or family, because I always had so much to do that I didn’t feel like I could justify taking the time out to leave the house for anything that wasn’t absolutely necessary. Now I know that asking for help is absolutely necessary sometimes. I felt like I couldn’t do fun things that I liked to do unless I got enough done first; now I know that rest and hobbies are part of maintaining my own identity. I’ve always felt like being Miranda and Betsy’s mom is my truest calling—but it’s not all there is to my Kristen-ness. To really be the best Mom that I can be, I have to actually be myself. I can’t let all the non-Mom parts be lost in the void. Another game-changer for me has been starting therapy. I wish I had done that a long time ago. If you’ve been thinking you might need it, you probably do, so my advice is to go for it! I’m understanding myself so much better, and it’s helping me show up to my life in a way I couldn’t before. Self-care is not selfish.

I would have searched for real-life Down Syndrome community much sooner. As I mentioned earlier, Ian found Gigi’s Playhouse last summer, so we’ve been going there fairly regularly for almost a year now. I wish we had known about it sooner. I was following all these Down Syndrome related accounts on social media and talking to other parents there, and that was great, but it’s sooo not the same as real life connection and support. Before last summer, Betsy was the only kid with DS that I knew, and she didn’t know very many other kids at all. It has made such a difference for all of us being around other families that are in boats like ours. And I didn’t even realize we were missing out.

Betsy these days

Before Betsy, there was just so much I flat-out didn’t know, and I didn’t even know I didn’t know. Three years in, I at least know that I still have a lot to learn. There’s a lot I wish I could have done differently (this is just scratching the surface), and all of that now falls into two categories: things I can change and things I can’t. I can’t undo the past, but I can use what I’ve learned in the present and the future. I know better now, so I can do better. I can take steps to reduce stress. I can choose faith over fear. I can research and prepare. I can trust in myself, God, and the processes of life. I can ask for help when I need it. I can seek and take part in community. I can ask questions and advocate for Betsy (and myself) in medical environments. I can keep her in the therapies we’ve already started, and get her involved in the others she needs. I can take care of myself better so I’m not trying to pour from an empty cup.

Now that I know what I know, you’d better believe I’m going to keep doing all of those things, and much more.

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