Following Up

March 20, 2014 § 2 Comments

I can only say that we are speechless at the response we’ve gotten from you guys about our hard news. Obviously, there are pros and cons about sharing such things on social media but we can say wholeheartedly we know without a doubt it was the right decision for us in this situation.

It’s hard to know where to go from our last post. I can only say that we get up each day and approach it with as much honesty and communication as possible. I would be lying if I didn’t say that most moments are heavy with uncertainty.

For example, a few weeks ago we bought a couch because with Wright on the way we couldn’t endure the love seat we found on the street that we’ve been using. The two of us barely fit on it together. The couch was delivered yesterday. I sit on it this morning, thankful to be stretched out in the sun, gorging on social media – and with a knot in my stomach that it’s not likely the three of us will ever be on this couch all together.

Two days ago, after a jalk (jog/walk) I slipped on my favorite jeans – only to find them barely button-able. My heart sank thinking about how I have all of the drawbacks of pregnancy, but may never hold the baby that my body is rapidly changing to accommodate. Admittedly, having sailed into the second trimester of this pregnancy, I resent my continued ‘morning’ sickness – feeling helpless to understand how my body could be working so hard on behalf of Wright, and knowing that it is unlikely to make a difference.

Struggling to come to grips with what is happening while having to go about my normal life is perhaps the most complex part of this whole thing. I’ve often said that there is no coming to peace with not having a fabulous relationship with a parent, even if you know you’ve done all you can in regard to the relationship. I believe that the same can be said about a pre-natal diagnosis that assures pain, suffering, and likely death for the baby you’ve grown to love. I don’t understand and I don’t feel peace, though I recognize it is out of my hands entirely.

I was reminded yesterday about a passage in The Horse and His Boy – one of my favorite books in C.S. Lewis’ Chronicles of Narnia series. Since I first read the books in fourth grade, again and again I’ve returned to this passage:

Shasta was a little reassured by the breath: so he told how he had never known his real father or mother and had been brought up sternly by the fisherman. And then he told the story of his escape and how they were chased by lions and forced to swim for their lives; and of all their dangers in Tashbaan and about his night among the tombs and how the beasts howled at him out of the desert. And he told about the heat and thirst of their desert journey and how they were almost at their goal when another lion chased them and wounded Aravis. And also, how very long it was since he had had anything to eat.

“I do not call you unfortunate,” said the Large Voice.

“Don’t you think it was bad luck to meet so many lions?” said Shasta.

“There was only one lion,” said the Voice.

“What on earth do you mean? I’ve just told you there were at least two the first night, and—”

“There was only one: but he was swift of foot.”

“How do you know?”

“I was the lion.”

And as Shasta gaped with open mouth and said nothing, the Voice continued. “I was the lion who forced you to join with Aravis. I was the cat who comforted you among the houses of the dead. I was the lion who drove the jackals from you while you slept. I was the lion who gave the Horses the new strength of fear for the last mile so that you should reach King Lune in time. And I was the lion you do not remember who pushed the boat in which you lay, a child near death, so that it came to shore where a man sat, wakeful at midnight, to receive you.”

“Then it was you who wounded Aravis?”

“It was I.”

“But what for?”

“Child,” said the Voice, “I am telling you your story, not hers. I tell no one any story but his own.”

Two things strike me about this passage, one is that perspective is everything. The very thing that grips us with terror may very well be our salvation.

Secondly, Wright has her own story that is not mine, and it is not mine to know or understand – no matter how difficult that is for me to accept.

Lastly, we are not those people that think we are the only people that have struggled through this kind of difficulty. We are incredibly close to couples that had a baby at 24 weeks, friends who have miscarried – some in their second trimester (one who has miscarried so many times I’ve lost count), multiple friends who were the parents of stillborn children, a friend who lost her baby to SIDS, a couple who lost their infant to infantile leukemia… We know this happens and in no way feel like victims of cruel fate. We do, however, feel that just as every one of the previously mentioned situations is unique and uniquely painful – similarly, this is our own story. We must walk through it and come through it on our own terms.

I remember when I finished my first marathon, becoming a part of an ‘elite’ 2% of the global population, I began meeting marathoners everywhere – that 2% seemed far greater to me than I had imagined.

We are now a part of 1% of the population who have a child diagnosed with cystic hygroma, and 2% of the population with a Trisomy 13 diagnosis. While I can say that I do not hope for this population to be greater than I imagined, I have been touched by the Tri18 moms I have been connected with.

I can say with great certainty that neither myself, nor Justin feel that we (or Wright) are unfortunate in this situation. She is perfect, and we know that she is a gift to us for however long we have her.

Thank you again for all of your kindness and care, it is humbling to be surrounded by such generous and big hearted people.


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§ 2 Responses to Following Up

  • “I can say with great certainty that neither myself, nor Justin feel that we (or Wright) are unfortunate in this situation. She is perfect, and we know that she is a gift to us for however long we have her.”
    Love that. Amen and amen. Stephanie, thank you for being in touch with me (via the Peschel sisters.) You & Justin are reaching the same conclusions we reached with our little Elisabeth Maxine after we got her pre-natal T18 diagnosis back in September: This is her own greatest life, and she’s our daughter, she’s known by God, and life is beautiful with all it’s difficulties.
    Why it takes these hard things to force us to see these simple truths, I don’t know!! We’ve done a lot of Inside Baby activities (new couch purchase was one of them coincidentally!) knowing that THIS may be our only time with Elisabeth. It’s not what we want, but it may be what we get, so we’ll take it.
    Love to all three of you from Austin, TX-
    Anissa Scholes


  • christy says:

    Beautiful Steph! Just Beautiful! I have no words other than to say we all learn so much from each others stories & it is a gift to one another when we each share. It gives courage to live each of our stories. Thank you for sharing & giving a voice to Wright’s story. Love to you all!


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