Pregnancy & Raising A Special Needs Child

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While I have been so incredibly public about what happened with the twins and losing our daughter, I’ve been conservative in sharing my emotions surrounding our son Benjamin for a while now. This has nothing to do with his disabilities or the results of his and his sister’s traumatic entrance into this world, and everything to do with the guilt I wake up with every single day. In the beginning it was overwhelming. Now, the beanstalk has shrunken to a small seed of apprehension in my mind, yet it’s still always present. It’s there when I’m feeling anxious, and it’s there when I am well aware this guilt is illogical.

Benjamin Kainoa was born healthy, though it was at 27 weeks 5 days gestation. His twin sister had passed in-utero, and due to the high risk of infection, he had to come out. Both Ben and I were recovering from the c-section with no complications.

Then, within ten days of his NICU stay, he contracted Necrotizing Enterocolitis—a rare disease that causes a gangrene effect on the bowel. This horrible sickness plagues up to 8% of preterm infants, according to the Merck Manual of Diagnosis and Therapy. As of today, no one is completely sure of a cause; current research-backed theories range from external bacteria entering the infant’s gut through first feedings (I wasn’t producing my own milk—it took six days for just my colostrum to come in, so he was put on formula and hospital-scanned donor breastmilk), to mere irritation caused by gut immaturity and a weakened immune response at that age.

That day Benjamin went from having a slight fever, to completely septic within two hours. He had to be resuscitated, placed on a ventilator, and pumped with several medications just to keep his organs going. He lost 70-80% of his bowel and survived by the hairs on his tiny, fragile head. The most unfortunate thing to come of this, besides the temporary short-gut syndrome, was that due to the stress imposed on his body—a partial bilateral, partial posterior brain bleed had occurred.

Since then, we’ve been prepped and primed by his therapists and doctors for what this could possibly mean for him. Despite his occasional hurdles, Ben has done incredibly well in improving his gross motor skills, impressing his in-home therapists and doctors with every weekly visit. He progresses in leaps and bounds. We accept his diagnosis, and love him with every single fibre in our souls. He is the light of our lives.

Last summer after Ben’s first birthday, we began to realize the challenges that may lie ahead regarding his developmental delays becoming a true disability for him in the far future. Many heart-wrenching thoughts began to surround that notion —Will he be able to go to school? To college if he wants? Will he find a spouse to help us love him in all the ways he deserves?

The answer to most, if not all of our unfounded worries is a resounding yes, as we now know that there has never been a better point in history to rock a physical disability. There are millions of resources out there for us online and in our community.

We eventually began to think, maybe Benjamin was better off being our only child. That way, he would have our undivided attention, and in our minds that was the best thing we could offer him.

Two weeks after Tim and I had this discussion, we were in Hawaii visiting my parents when I suddenly felt faint. I’d gotten up to grab him a beer, and the room began to spin. Vertigo. The last time I’d had vertigo was during pregnancy. I shook it off as a sinus cold and went about my night. But a week later, I began to feel super nauseous. When we got back home to San Diego, I took a home test—sure enough, there were two very dark lines. I tested again. And again.

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We were slammed with excitement, but feelings of confusion and fear began to creep in, too. How would this work out? This was so unfair to our son. For a brief, raw, internal moment for which I hope to not be judged… I considered not going through with the pregnancy. Just for a split second. I didn’t want to do that at all, but maybe it would be better for us. For Ben.

Terrified, I fought those thoughts back while Tim called to tell our parents, who were thrilled with the thought of another addition. When I told my grandma, my mom’s mom, who is a worrier like me… she was silent. Then she spoke in Filipino. What about Benjamin?, she asked me quietly. I’m sure she wasn’t the only person to have those thoughts; my gran just doesn’t hold anything back.

But then, I remembered what a miracle it was that we conceived naturally in the first place; the twins had come after months of trying, and were the products of a Clomid-induced pregnancy. I did not ovulate on my own… Or so we thought. It was an anomaly. I recalled how many friends I knew personally—friends who prayed for this exact miracle every day. I cried myself to sleep.

Our family just wasn’t finished yet, and this was God and the Universe’s way of telling us.

But you see, after being so suddenly thrust into the Special Needs community, these are thoughts that plague us parents and caregivers every day. After these experiences, you are so much more aware that having a baby without serious medical issues is actually a miracle in itself. People don’t think about these things if they haven’t forgone what we have. This time around, Tim and I are simply unable to live in ignorance as we did before. We cannot forget the things we saw, the other even stronger families we met during Ben’s 104-day NICU stay.

Adding another mini-person to our crazy family dynamic and going through another pregnancy seemed fucking insane. And yet, here we are.

And now that the first and second trimester hormones have settled, I’m slowly coming to realize that a sibling is the best thing we could give him. A lifetime buddy. A personal cheerleader and best friend.

Is the guilt still there? It is. However, the guilt I do feel from time to time stems from praying for a “normal” child. Almost as if in insult to Benjamin, who is now in the process of being formally diagnosed with what we knew he has had since his brain bleed—Spastic Quadriplegic Cerebral Palsy. We love him just the way he is, but at the same time, we hope for a healthy baby this go around. We don’t want it to occur again.

Although reconciling those two realities is hard at times, we’ve focused on the thing that will be beneficial for all of us. Peace.

Peace with what happened, and peace with our feelings. Peace with a hopeful future, and that it’s okay to want that.

At first, we feared that having another baby would worsen the guilt we felt over Ben’s condition. But as we’ve progressed further into this pregnancy, it’s done the complete opposite. Benjamin wasn’t born into ideal circumstances, no doubt there. But these days, his story only adds to his uniqueness, the capacity for compassion and a loving, more sensitive understanding of humankind. He might or might not be able to walk or run, but at least he is here and very present cognitively. His brain bleed did not affect him intellectually, which is our biggest relief of all. He loves conversation, loves listening to medical jargon, and even talks back to us now. We’re pretty sure his intelligence will help someone else someday, maybe save a life or two.

Equally, we feel peace in knowing our new baby’s ultrasounds—and extra monitoring this time—have revealed no complications thus far. Everything looks super healthy, and we’re all counting the days to meet her. We are processing that, having more children doesn’t at all detract from the love we have for our little warrior of a firstborn. It doesn’t detract from the effort and diligence we’ll pour into him, and his siblings will only raise up and support him.

It’s a good plan, and the right one for us, even if it may not make sense to others in this moment. In the meantime, I’ll just shut up about my worries, appreciate my growing body and the beautiful child inside it, and enjoy my cakes and cookies while excusable to do so.

 

 

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