So, I cannot believe it has almost been a year since I was able to sit here and put my fingertips to keyboard and write! Oh, I have started the odd blog and had so many ideas of what I wanted to share, process and then 11 months go by of evenings cleaning up after kids, making keto-snacks, paying bills, sending in receipts to health benefits, etc and nothing gets written. I must admit, my heart pounded with excitement as I realized I would potentially have an hour to myself to write. So here I am – I never really left but I am back!
(I started this post a few months ago!)
It might come as a surprise to some of you, but we are proud to announce the arrival of our daughter, a little sister for Blake. She is now almost three six months old (how time flies) and it is hard to imagine how life was without her. For so long, it was impossible to imagine how we could possibly have another. Life was just too hard.
Now what is your reaction to this news? Shocked? Pleasantly surprised? Do you think we are crazy? I think some (maybe most) silently thought that we were (some not so silently!). Were we not barely hanging on some days? Is Blake not still seizing dangerously and isn’t sleep already lacking in our house? Are our hands not already full with therapies and research and diets? Well, yes, yes, yes and yes.
But there was something nagging in my heart. I wasn’t done. We had always wanted more children. Birthing Blake at home, naturally, was one of the most empowering, fulfilling experiences of my life. And the day of his birth I knew I wanted more children. So to live in the limbo of knowing in our hearts that we desired to add to our family, yet knowing that even though we had taken every precaution possible – from both Jason and I stopping drinking months pre-conception, to not using any chemicals on myself or in the house (no hair dye, no painted nails (OK – for those of you who really know me, I know you are not surprised about the no hair dye and nail polish!)), to purchasing and cooking healthy foods always, taking all my vitamins, being fit and active, having great prenatal care, and even ensuring that the new house we bought before Blake was born was not close to powerlines – despite all of these efforts, when the cells of our son was forming inside of me, a spontaneous mutation took place and Dravet syndrome was the result. If something that random can happen to us, then who was to say it couldn’t happen again?
We did the genetic testing after Blake’s results came back – both Jason and I tested negative for the mutation Blake has. So it was what they like to call ‘de novo.’ It didn’t come from us. There was a small chance that somewhere hiding out in one of our germ cells was a mutation – the only way to rule that out was to use IVF and test the resulting embryos to ensure they were free of Blake’s SCN1A deletion mutation. Even though this would have given us 100% peace of mind, I knew I wasn’t up for this and if we chose to have another child, we would have to take our chances.
We did not come to this decision lightly (yes, it was a very intentional decision). We spoke to our doctor’s, Blake’s doctors, other parents, our own. Not all had the same opinion. One thought we were crazy, one said, “absolutely, go for it!” I remember my Dad telling me his only regret was not having more of us. Just us considering it was an indicator of where we have progressed in our journey with Dravet Syndrome. We have passed through the horror of discovering that our precious son could have something so terrifying. We have passed through the denial, the daily to then weekly round of doctors, specialist, therapy appointments, desperate to find some treatment that would help. Not to say that we are no longer seeking helpful treatments; I am just a lot more discerning of not continuing to pursue something if I don’t see great benefit for Blake and our family. We passed through the phase of letting go of the idea that things would get better and we didn’t need more supports for our family to survive; then through the long phase of having many unhelpful “helpers” until we found one that is the perfect match for our family. And then I passed through the grief phase of letting go of the idea that we could have more children – how could I possibly give any more of myself? how could I care for an infant while Blake seized? how would we manage hospital stays? how could I squeeze more love and attention to Blake’s older sister? to my husband? and where would I be in all of this? And how would Blake, my baby, possibly respond to me caring for another baby? I cried so often as I rocked Blake to sleep and as he grew knowing but not liking that he would be my last child. I remember reading posts of other Dravet families announcing that they were expecting or had had another child with awe – how could they do it? Where would they find the energy? Were they not scared shitless that if could happen again? I read a few posts from families who had had more than one child with epilepsy, or a child with other special needs. Could our hearts and health, our marriage hold up to care for another possible sibling with any kind of special needs?
Then, as I have mentioned in a previous post, we came to a point where we were stuck and came up with our new measuring post of making decisions: would this bring us and our family more joy? Well, neither of us could say we were done having children. And the clock was a ticking. We had the most support we had ever had. With Blake’s IVIG treatments, he has not been admitted to hospital for over 1.5 years! So, we had to answer honestly: YES – this would bring us more joy. So, we both prepared our bodies and hearts and when we were ready we tried. And, as a psychic told me 2 years ago, if we tried, baby number 4 would be waiting for us (we miscarried between Blake and Sadie). And, she was!
We were offered the opportunity to test prenatally for the mutation. We declined. I did, however, want our new baby tested as soon as it was born – hoping I could mitigate the trap an exhausted, emotional new-Mom could fall into – seeing things that are not really there, waiting on egg shells for the bomb to drop and for our life to explode, again. Since Blake was my last baby, that is what I remember babies being like. And it is easy to see something that is not really there. Even so, the test would could take up to 3 months to provide results. Well, I knew by 3 months something was up with Blake. I hoped we would get results sooner.
And After the excitement wore off, what is the first thing an older sister to a special brother says, when she finds out her parents are pregnant, “Will this baby have epilepsy too?” All we could do was hope, pray and know that we would love this baby regardless. When I asked her how she would feel if the new baby did have epilepsy, she responded, “sad Mom. I’d feel sad.”
And, other than a scare in the last month of pregnancy that the baby was not growing, everything progressed well. Somehow, despite working for the first time since Blake was born, tragically losing my oldest sister, and continuing to deal with Dravet and our daughter’s first year of school, I managed to not worry (too much) – my heart felt solid that everything was ok. Our children loved anticipating the new member of our family – Blake constantly lifted up my shirt to say, “hi” (and he still is!). Big sister hoped desperately for a little sister. And I felt so blessed to enjoy another pregnancy.
Baby arrived a week or so late, born at home so peacefully and magically – perhaps it was a further sign of the rightness of the whole thing. Nothing has brought me more confidence and connection to the amazing power and to a love of my body, and of my husband, than birthing our babies. And my older babies were right there, awakened minutes after her arrival to come and meet her. They were so excited and JOYFUL to greet her. Blake ran back to his room and brought his favorite books to read to her. Big sister cut the cord. We all cuddled and adored her together in our bed, in the wee hours of the morning. And a rightness fell over us. Dravet gave us a reprieve for a few days. And everyone has adjusted wonderfully. As I sing Blake to sleep, he shares his blankets and stuffies with our girl and she smiles and coos back at him. Big sister loves to haul her around, and make big noises to make her laugh.
A month after her birth, I got the call from the genetic specialist that she had no mutation on her SCN1A gene. I burst into tears. The moments when I let fear get in my way and I thought a normal jerk in her sleep was a sign, made me just about lose my mind. I kept my fears to myself, too scared to utter them to another human being. Life, at times, has and does feel really cruel as we watch Blake seize and suffer, and it felt suffocating to imagine going through such a huge loss, again. While I waited for the results, and as my hormones crashed, I had to fight off my fears, often telling the universe outright, that she was NOT a replacement baby. That now that we had a healthy baby girl, the universe did NOT have permission to take my sweet boy. The fear of losing Blake never goes away – rather it sleeps in a corner of my heart and when awakened, drops me to my knees. We had a baby because we imagined a three child family, not two.
When I look in the rear view mirror of my car, I marvel at the family we have created, filling the entire back row (and barely squeezing in!). And I know she wouldn’t be here if we didn’t have a third, amazing set of adult hands in the house helping us at all times. This baby just seems to know – when Blake is seizing, she is often handed around, or even laid down beside Blake while we all do what we need to do, without protest. She comes to appointments, and is often not even noticed if she is in her stroller and not pointed out. She does announce herself in lovely song and high pitches when the time seems right and it is just our family around. Our hands are full and we are tired and busy but it is wonderful. And she smiles more than any baby I’ve known. As she grows the middle name we chose for her, as a family before she was born, is more and more fitting. Baby “Joy” Arsenault has really been that – a JOY and a healing force in so many ways.
One night as I put Blake to bed, in the middle of me singing him one of his favorite songs, he said, “tank you, Mom.” I asked him for what. He said, “elle.” I confirmed that he was thanking me for his baby sister, and he said, “yes!”. I cried. I wept. I knew we had made the right decision. This time Dravet didn’t win. It didn’t stop us from listening to our hearts. What other people thought didn’t matter. And boy is this Mommy grateful that now there are three…..
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