Pause

Today is Rowenna’s Heart Day.

A year ago today, Rowenna was carried away in the arms of an anesthesiologist while hubby and I stood in stunned silence. I had the fleeting thought that I have the sweetest baby since she had gone so willingly and spared her mother the heartache of watching her cry.

I also had the fleeting thought that it would be the last time I would ever see her awake and smiling. As I’ve said before, watching a child go through open heart surgery is nothing I would wish on even my worst enemy. No mother should ever have to have that thought flash through her mind, especially when it is a legitimate possibility. I will never forget how she looked that morning and I protect that memory fiercely.

But thankfully, Rowenna was in extremely capable hands and 9 hours later she was wheeled out from the operating room, a little smile on her lips. That’s when I knew she was going to be ok.

Rowenna Recovering After Surgery

A strange thing happened then. Four months after she was born, I was staring down her Down syndrome diagnosis again. I had no idea how far back in my mind I had put it so that I could handle the heart thing until it came careening, screeching back into the forefront. There were rough times after her heart surgery while I grappled with the diagnosis again, a diagnosis that couldn’t be fixed or cured. Time and the support of family and friends got me through it.

A year later, I’m staring it down again.

We’re thinking of a sibling for Rowenna. But for us, getting pregnant again isn’t just as simple as deciding whether or not we want another child or have the resources to provide for another child.

Because I’m a balanced translocation carrier, we have to be open to another child with Down syndrome in a way that the vast majority of people do not. The fact that having another child gives us pause at all has sent us into tailspin. If we hesitate to welcome a second child with Down syndrome, what does that mean for Rowenna? Do we really accept who she is if we hesitate? Is it wrong to worry about providing for two children with Down syndrome? Do we not love her as much as we think we do? We’re floundering, and there’s not a lot of places to turn for help out of this.

This is a very isolating feeling. I’ve hesitated to post this for a few weeks now because I know it will not be welcome in the Down syndrome community. I’ve even backed away from  a few sources of support because I no longer truly feel a part of the Down syndrome community.

So here we are, a year after tackling this diagnosis, staring it down again. We’ll get there. We’ll come to an understanding again. I know with a lot of prayer, patience, and love we’ll be at peace again.

In the meantime, we are blessed with a girl full of smiles – a girl who is really developing quite the sense of humor. A girl we love very much.

Rowenna's Wild Bedtime Hair

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7 responses to this post.

  1. Your raw, candid, transparency once again stops my heart a beat. Thank you for your courage in sharing both your joy and fear.

    Reply

  2. From my perspective this doesn’t even remotely put you out of place in the Ds community. These are very real concerns that anyone in your position must consider. I hope you are able to make the decision that feels the best to you. And Happy heart day, beautiful girl!

    Reply

  3. What a whopper of a post. Boy oh boy do I get it, and I know the very same questions would be flitting around in my mind. They are, actually, since I do want another child and I do want another child without a developmental disability. So, what does that say about moxie, I wonder too. I love her. I’m so grateful I had her. I chose well in keeping her. I’d do it again in a heart beat. And I want her to be well protected from a world that can be cruel especially fort the with developmental disabilities. That’s all I have synthesized within my own thoughts so far… It’ll take time for it all to become more clear. But I do want you to know how alone you are NOT and how much I appreciate your lovely candor and sharing

    Reply

  4. Posted by Marita on October 1, 2011 at 5:15 pm

    Well, that got me all choked up. I hope that when I have kids I can love them and care for them as much as you do Rowenna. I wish I could give you a hug in person today, but since I can’t I am saving them up for when I see you next. Give your baby girl a hug for me, and tell her that her Aunt Marita can not wait to meet her in real life. Until then, take good care of each other.

    Reply

  5. Posted by Sarah on October 1, 2011 at 9:56 pm

    I follow the BBC Ds board and got very worried a few weeks ago when you posted about Rowenna’s symptoms and upcoming hospital visit (for those tests) and then I never saw an update. To my knowledge you haven’t posted since so luckily I knew to keep checking back here and finally you posted about the farm. Now I understand your absence. I agree that some on other boards might question your thoughts (many, in my opinion, remain raw with emotion for a very long time), but others, like me at least, understand completely. Leah, above said it, “These are real concerns”. Accepting Down syndrome and providing a lifetime of some level of support for one or more people with Ds are two separate things. I think your thorough search is loving and responsible and not disrespectful of our loved ones with Ds at all. No one should criticize you and if they do I would just ignore it (I know, easier said than done). But your situation is unique and few others walk in your shoes. You deserve support and many will offer it to you if you do decide to post. I miss your thoughtful insight but I understand if you decide not to take it past your blog or if you need to stay isolated . I pray for clarity and peace of mind for you and your husband! Be good to yourself. Your love for your daughter is unquestionable.

    Reply

  6. I, too, was concerned about you and Rowenna since you two have been “off the grid” for a bit. I am sorry you feel like you cannot share this for fear of others’ reactions. I do not see this as a lack of, or lapse in, your love for your daughter. I see this in-depth consideration of your situation as the ultimate love gift to Rowenna.

    We miss you.

    Reply

  7. Anyone’s decision to have a child or not is such a personal one. Nobody’s reasons will be the same. I’m sorry to hear that you don’t feel you have the support you wish you did. I would hope others would see your thought on the issue is because you love your daughter.

    Reply

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