Williams Syndrome Wednesday: Finding ‘our people’

by , on
Sep 19, 2013

Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their parents bed, with a paci, unpotty trained, unable to push up on their tummy). Which is all well and good…unless you’re uncertain if your child will be capable of going to university at all.

Talk about a mommy-group mega-downer.

But finding other mommies of small kids dealing with genetic issues and resulting delays is a challenge. Until it’s not. This past week, Obi and I started going to a baby group that incorporates typical and special needs kids and their parents. I was a bit nervous walking in last week but I quickly settled in and found some moms that are going through a lot of the same stuff I’ve been dealing with. Finally! Someone who ‘gets’ where Obi and I are at.

Of course, with those who ‘get’ often comes those who should ‘get lost’. There was one more mom sitting in our little circle amid a room full of about 20 parent & baby combos. This woman also had a story. Her first child (not the one in the group) was a micro preemie. He spent weeks and months in the NICU, was touch and go for quite a while and now is “a perfectly healthy and happy 5 year old, reading at a grade 2!!! level”. All this was delivered in a manner that made it sound like her son was now typical and someday ours would be too.

Now I get that she’s been through a lot. Nobody gets out of the NICU unscathed. And it sounds like she had quite a ride.  But, there’s a time when you need to find your people. And 3 moms with kids with chromosomal abnormalities all talking about the uncertainties, isolation and fear that comes with this type of diagnosis…we’re not your people. Once you got to the “everything is great and now my kid is 2 years ahead” part you self identified as one of the mom’s who just can’t get what we’re going through in a few minutes on some squishy floor mats at a mom’s group.

I know you don’t mean too, but you kind of make us feel bad. And it seems just a little like you need to try and make us feel better to make yourself feel better. Which also isn’t helping.

I’m all for talking about “motherhood” as a concept. I’m all for hearing about your child’s personality or about how you feel about going back to work. But I don’t want to hear patronizing comments about how Obi will ‘catch up soon.’ I know that sounds bitchy, but I just don’t. Especially when they cut off another mom who has been as desperate to talk to someone else who got a life changing diagnosis as I am.

Stay. Listen. Learn. Smile. Nod. Compliment the cuteness of our kids. But if you can’t keep your awesomeness to yourself, keep moving to the other side of the room where all the kids that are ‘younger than ours but are crawling around like champs’ are playing. Go play my-kid-is-better-than-your-kid with them.

I’ve found my people. And I’d really, really prefer you don’t ruin this for me. For me and my people.

Pumpty Dumpty

by , on
Aug 15, 2013

Pumping. It’s the norm for mom’s whose teeny babies are in the NICU. The hope is, with a little time to grow and practice eating, the babes with transition to nursing if that’s what the Mom wants, and the pump becomes a distant memory.

In a less rosy version of the story, teeny baby is born, Mom starts to pump and baby won’t nurse well enough to get discharged. So the bottle gets introduced to help get baby home and the attempt to nurse continues at home. The Mom tries absolutely everything while continuing to bottle feed some of the time, but baby doesn’t gain enough weight and the lactation consultants Mom has been seeing 3 X a week for 3 months say it’s time to stop and just feed baby by bottle as the failure to thrive has gone on long enough. Baby’s pediatrician also encourages abandoning breast feeding to allow baby to rest between bottle feedings and finally gain weight. Spurred on by a very, very strong desire to nurse, Mom sees worldwide breastfeeding guru to attempt to continue bre_astfeeding despite an utter (ha, I said udder) lack of success. Baby latches just fine but can’t transfer enough milk to offset the calories spent trying to nurse.

Guru insists lactation aid will do the trick so now Mom and baby are attempting to nurse, attempting to nurse with lactation aid and bottle feeding. Oh, and pumping.

Mom, despite a healthy dose of Mom Guilt, decides it’s time to just accept the bottle and spend the other hours a day previously spent attempting to bre_astfeed baby bonding with baby.

So the bottle prevails and the pump continues to wheesh, wheesh, wheesh – setting the soundtrack for hours and hours of babies first, second, third, many months.

Mom hates that pump. But, the Guilt and the desire to nurse which was foiled earlier in the story are stronger than the hate and the pumping goes on and on. Fast forward 8 months from when baby arrived.

The pump is still pumping. The  Mom is still hating. The desire and guilt are still driving. And the milk is still present and accounted for.

What I want to know is how the story should end. And when?

What do you do when your ideals and your guilt are running your choices (wheesh, wheesh) and you’re beginning to think you should pull the plug and dump the pump? I don’t have a good answer really. But if you do, perhaps you can help me write then end  sordid tale.

 

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