Part of the club

As I hurried back to the group from a quick bathroom trip, I took a shortcut through the pavilion.  Weaving my way through the picnic tables, I paused momentarily to let another person pass.  A woman with a kind smile took the opportunity to say hello.

“This is Easton.  He decided it was too hot to walk.” She introduced me to her son, who looked about 11 and had the classic features of Down Syndrome.  I sympathized with the kid, because the forecasted temperate 70 degree day soon morphed into a hot 82 degrees.

“Hi Easton,” I said.  “I’m Meghan.  Today is a big day for you, huh?”  He smiled and nodded in response, proud of the day, the day of the annual Buddy Walk, a fundraiser for our states Down Syndrome Congress, the day where he is center of attention, celebrated in a way he should be everyday.

Easton’s mom looked at me and asked, “Are you a mom too?”

I was wearing a light green shirt that announced my membership in team “Jenna’s Journey,” supporting a little girl who I had the privilege to help bring into this world six years earlier, surprising her parents with a Down Syndrome diagnosis at birth.  I had also run into another patient who had a huge team walking for her son, another boy who surprised his family at birth with features consistent with Down Syndrome.  Both these families rallied support for their children, creating teams with t-shirts and raising money. Having been distracted by the live, in person children with Down Syndrome that surrounded me, I was caught of guard, by this woman’s question.

“Yes,” I said confidently, realizing that I too was a mom to a child with Down Syndrome.

“How old is yours?” She said smiling, happy to know we were both members of the same club.

“She died shortly after birth.”

Her face didn’t fall, revealing the typical horror at the mention of a dead baby.  Instead, I saw a shadow of sadness cross her; she was sad because she knew what I was truly missing out on, the joy of raising a child with Down Syndrome.  We exchanged a few more words before I departed to rejoin my team.  I left her, with a little extra gratitude for opportunity to parent her son and she left me, with the reminder that I too belonged. I am a mom of a child with Down Syndrome.  I got to be part of the club!

 

It was the highlight of my day.

 

Where do you fit in?  What new memberships have you gained in your loss?

 

Advertisements

14 thoughts on “Part of the club

  1. I found a lot of parent support networks for kids with various forms of dwarfism, including one specifically for parents of children with Ellis van Creveld syndrome (Owen’s official diagnosis). I joined the Parents of Little People online group when it started looking like Owen *might* live because I figured there were some accommodations he would need, and I wanted to be prepared. I hope this isn’t going to sound weird or wrong, but as much as I was excited to be Owen’s mom, I was also excited to join this new club of parents! Everyone on the boards was so kind and welcoming, understanding quickly what it was like to parent a baby that is very different from most babies. Many understood what it was like to face a potentially lethal diagnosis, and some parents had actually lost one or more of their children to lethal forms of dwarfism.

    When Owen died, I left all the groups except the Ellis van Creveld group. It was just too hard to read about kids beating the odds when mine hadn’t. I do still miss those parents though. I wanted to be one of them, talking about modifying sleeper sets to fit tiny limbs and which car seats were appropriate for babies who won’t reach the height limit of an infant seat until 2 or 3. I joined a different club, I guess, one that I never wanted to be a part of. It’s comforting, but I miss being a mom of such a unique little boy.

    • It doesnt sound weird or wrong. There was a part of me, eventually, that became very proud to be joining the parents of a child with Down Syndrome club. I did the same- joined groups to help me prepare. I had to leave the group for those pregnant with a child with DS because almost everyone shows their smiling baby photos which was too painful. absolutely everyone in the DS community I’ve met has been so kind. there is a kinship there as Im sure there is for your groups. For me, when I tell people why she died and mention the DS, I chose to do so out of pride. I want people to know that I knew way ahead of time and I accepted. I would have been a great parent to a special needs baby. As would you! how cruel, that we said yes, only to not be given the chance.

  2. Reading both of your stories makes me realize (yet again) how uneventful my pregnancy was and how simple and happy our first days with Paul were. I guess I was part of the easy pregnancy, healthy baby club. A club in which most members are unaware of their luck, a club that you are no longer a part of once your baby is gone.

    • ahhh, yes the club where members are unaware of their luck. I never really was a part of that club, being a midwife and knowing too much. But I’m so glad you got to be a part of that club. I’m glad you could enjoy your pregnancy for what it was- a beautiful, natural thing. Its a different kind of cruel for you to survive the crazy danger pregnancy/birth part many of us fell victim to, only for your world to be stripped away so suddenly. without any preparation.

  3. I have difficulty feeling like I belong anywhere anymore. I’ve been a part of so many clubs, with all the different situations that have presented themselves over the course of my child-bearing years. I find that being “back”( in-depth) into the circle of loss is disorienting for me. I’ve been here before, never having really left at all IRL. I had come to accept and assimilate the loss of my first son, B.W. Now, with the loss of Zachary, to completely different circumstances, and piling on top of B.W.’s death, I find myself in the same circle again, but with different people. I feel like a worn-down work horse while it seems that most in the loss community are still capable of the kind of hope that now totally eludes me.

    I am glad you feel positive about your Buddy Walk experience, your interaction with the other mom/son and belonging somewhere.

    • gretchen, i think there is a a club for the people who realize bad things dont always happen just once. you’ve opened my eyes (as if they werent already opened enough). I”ve had soooo many people say it wont happen again. it was random. But i want to scream at them- you dont know if I can even get pregnant again! and it could technically happen again! or something else bad could happpen! I know, because I know people who have lived it! huggs to you and the “know waaaay too much” club

  4. I mean, besides the babyloss club… which isn’t one anyone really wants to be a part of… for me, i think I most identify with an online group that is for parents who lost babies in the NICU. There are so many NICU success stories that those of us whose babies don’t make it out – and there are a lot of us – are often “hushed over” because, well, it’s just too darn sad. It’s a special club, and I like that one of things we are often most united over is our love for the nurses, doctors, social workers and chaplains who sustained us during that time. My loyalty to my NICU is unbounded :).

    • You know, I dont feel a strong connection to the NICU club- technically I totally belong. My baby lived all her time in the NICU, but it was such a short stay compared to yours and most others who belong in that club. I’m like the mom who wants to claim membership after her baby spends 6hrs but then gets moved up to the regular nursery. hah! I didnt have to deal with going home to sleep, fearing something would happen to my baby, the day in day out rollercoaster, the pumping, the schedule adjustments… so I”m not quite part of that club -and I dont envy it either. how draining it must be. especially because your baby never made it out- the hushed over one.

  5. I’m glad you felt accepted, and part of the club. I’m not sure if I feel like a twin mom – in part, yes, but there is such a huge part that’s missing that I don’t really identify with it. I stopped reading most twin blogs because it is too painful a reminder.

    From your experience, how common is diagnosis at birth? This happened to my cousin-in-law a few months ago (her little one is currently recovering from heart surgery, but has overall been doing quite well) and we were all rather surprised. Where she lives ultrasounds are done at pretty much every office visit, but I don’t know if that actually makes a difference in diagnosing DS earlier.

    • the diagnosis at birth depends on moms age and whether she opted testing. Most diagnoses are at birth because 90% of those with a prenatal diagnosis terminate. Most babies with DS are born to “young” moms because they are less likely to opt for testing than “older” moms who have the higher risk. Ot doesnt make too much of a difference in diagnosing DS earlier- it usually just allows for more mental and logistical preparation. Prenatally I had already been to a annual conference of my state DS congress, i met with a special needs lawyer, I met with pedi ortho to discuss her treatment of clubbed feet. I talked to parents, gathered recommendations for therapists and specialists. and it allowed me the monitoring that discovered her low fluid (i’m unsure it would have been diagnosed otherwise- no way to know). that allowed me to begin the preparation of seeing my baby die. An ultrasound can only tell some of the times- for example Mabels ultrasounds didnt show she had any heart defects, but in reality she did. Ultrasound is not very specific. I hope your cousin recovers well and your family enjoys the little one and all his/her glory.

      and I think you are as much a twin mom as I am a mom to a child with DS. I can understand the disconnect too. But you were preparing for twins, envisioning twins, doing what you could to stay pregnant with twins. in my mind, I’ll always identify you as a mom to multiples. caring for women in pregnancy with twins is a separate experience- different thing to consider- and you had it all.

      • Thanks for the details! This little girl needed abdominal surgery shortly after she was born, which I imagine must have been quite a shock for the unsuspecting parents. On the other hand, I don’t think anything can really prepare you for the fact that your baby might not make it…

  6. My family is doing a walk for pediatric brain cancer next weekend in Sacha’s honor, and I’m so happy that they are doing it, but I can’t make myself go. It’s so difficult for me because we didn’t know anything was wrong until Sacha had basically already died… his diagnosis was more of an afterthought, and there was no opportunity to talk to experts or consider delivery options and treatment options. I can’t bring myself to go and be surrounded by children who are able to get treatment, parents who are able to make decisions about their child’s care, people who have useful doctors and hospice options….

    I don’t feel like part of the NICU loss team, as babylossmama does, because unfortunately the doctors at the NICU were pretty clueless and confused, and we got there far too late — the nurses and social workers were great, but we were just in the wrong place at the wrong time with the wrong doctors.

    I think my club memberships need to lie elsewhere, because I can think of dozens of memberships that I’ve lost through this experience and none that I’ve really gained. So: I’m a single person whose infant unexpectedly and traumatically died… and I’m a member of the yoga club, the dog-owners club, the Spanish-speaking-white-kid club, the outdoor-swimming-enthusiast club, etc… and I may occasionally end up crying in the corner at those club meetings, but I have a good reason for it.

    • sounds like you a multi-club member with a bit of a secret that makes you cry in the corner. i hear ya. I’ve given up many memberships myself too. I used to be a non-profit founder, community service doer, outgoing person. those I have given up o. but I too am a little bit in the white girl who speaks spanish club (a superficial membership- I’m quite good at OBGYN spanish, wouldnt say I’m fluent) and now the dog owners club too!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s