Next week is a big week for the boys medically.
On Wednesday, we meet with a neurologist from their new children’s hospital, and hopefully tackle the following:
- If the Sabril continue to be ineffective, what are our next steps?
- We need to schedule a swallow/barium study. There are no obvious signs of aspiration, but their frequent viral issues/congestion can also be a sign of silent aspiration. We want to make sure we aren’t being too dismissive. Especially as we start to try to introduce more challenging foods.
- I want to inquire about Vagus Nerve Stimulation. I saw those words for the first time last night, and then today my sister-in-law sent me a text asking if I’ve heard of VNS. Seems like something I need to understand better.
- We need to schedule a specialized eye exam, (beyond the physical exams they’ve been having).
- We need to assemble the “new” team and figure out who else will be involved in their care and at what frequency.
On Thursday we see their pediatrician. Getting established with a local doc will be helpful for a number of reasons.
- I need a local pediatric therapist recommendation.
- I need help with local options for Palliative care.
- I need someone I can call for referrals for programs like Help Me Grow/Birth to 3.
- I want them to know who our boys are and what we are dealing with so when our first urgent phone call comes in…we aren’t starting from scratch.
In the meantime, I’m very excited about a new development. Thanks to a developmental disability waiver, the boys are in a program that tries to assist with equipment. I don’t know exactly how this will play out, but we are trying to obtain:
- Special Tomato Seating (one for each boy)
- A bath chair
- Therapy devices (wedges and rolls)
- A vestibular swing
So…if all goes according to plan (because that’s how life works) we’ll be established with our new local and specialist medical team, and well on our way to creating a more accommodating environment for the boys by this time next week. Sounds easy enough?
This time last year…
In what seemed like seconds, I went from a glowing pregnant mom expecting boy #2 and boy #3, to a crying mess, not knowing what to expect. We started with Dandy Walker, and progressed to Lissencephaly. We were informed of abortion rights, warned of looming death, and on more than one occasion, feared we might lose Nolan before he could even be born.
As our news unfolded and my heart unraveled, I started searching frantically for moms like me. Moms who had heard this or a similar combination of news, but were choosing life. I found moms who had kids doing things we thought might be impossible. I found far more moms whose babies were already angels. Our particular combination of brain conditions was few and far between, (I only found one at the time) but the message I got by observing all of the stories was the same. There was no way to predict what was coming, or what OUR story would be.
That frantic search is one of the reasons I share our story so openly. And sure enough, those moms like me find us. They sometimes write me with concerns or questions. I am honest, but I can never offer any assurance about where they are headed. I wish I had something perfect to say to that mom…to ME this time last year. But there is nothing I can write that will help. I cannot advise. I cannot predict.
If I knew then what I know now…well, that might make the rest of the pregnancy easier. But that wouldn’t be fair. A large part of the struggle of dealing with an in-utero diagnosis is the wait, and the uncertainty. Being able to see photos of my smiling blessings might be comforting, but it wouldn’t tell me the whole story. It might misrepresent some of the heartaches we’ve had, how they are far behind their typically developing peers, or how they are “on track” with the horribly low expectations for Lissencephaly.
Somewhere out there, another mom like me is reading this. Perhaps not long after hearing her own baby has been dealt an unexpected label. And just like I could have in no way looked one year in the future…that mom cannot possibly look at our story and know where she is headed. I can’t say… “See! Your baby will live!” “Your baby will eat by mouth!” “Your baby will leave that hospital and make it home to enrich your lives in ways you never thought possible!” “Your baby will have a smile that could inspire the world!” I couldn’t have known that about our boys one year ago. And “that mom” can’t possibly know that about her own baby today. The cloud of uncertainty. Of fear. It cannot be escaped.
So instead of looking at where our boys are today. Instead of seeing how we find ways to love and be joyful despite the circumstances. Instead of talking about how this has strengthened my faith instead of shattering it. Instead of giving you the “if I knew then what I know now” thoughts…I’ll just say this…
I don’t know where your road will lead, or how your story will unfold. I don’t know what decision you will make, and despite the judgment you might expect to find here, you will find none. No one can understand what you are feeling unless they have been there. And only those who have been told to choose know the secret that there is also a tiny bit of guilt in choosing life when the quality of that life is so unknown.
But know this…If I were once again in that painfully vulnerable point, I would without a doubt make the same choice. If I was pregnant again today, right in this moment, and we heard those awful words about our next child. If I heard the odds, the risks, the downsides, the costs, the horror stories. If I read the life expectancy over and over and over until the phrase “two years” was burned in to my red tear filled eyes. If I knew as little about that baby now, as I did about our twins one year ago, I’d still do it all again. I’d see it through. I’d give him/her/them a chance. Because no matter how your story unfolds, you will never regret loving your child with all you have.