Anencephaly

Putting Brielle’s Room Together

~ lovingbrielle ~ Leave a comment
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Room inspiration for Brielle’s nursery. Photo credit here.

My parents and I have bought Brielle a few outfits. And I’ve hung them up in her closet. I originally thought this would make me sad. Wouldn’t it be heartbreaking to go into a room that was supposed to be hers and it go unused? Or to look into a closet that was filled with her things and know she’ll never use them? So I didn’t go into her room for weeks. I didn’t put her nursery together and I didn’t hang things in her closet. And then I did.

I’d stand there with a huge smile on my face, looking at her frilly outfits that she probably wont fit into and really not caring if she did or didn’t. David would come in and join me and we’d laugh about how cute she’d look with her beautiful smile and a ruffly dress with a big bow on her small little head. We’d stand there and happily dream about a future with her.

I decided I wasn’t going to let her room sit empty. It’s still her room. We even call it Brielle’s room. So we’re going to hire painters and paint it for her. I’ll leave the guest bed in there, because we’ll need it and I didn’t plan on putting her crib together until she was older anyways. I’ll buy her bookshelves for her books. And keep her special blankets and toys in her room too. It feels wrong not to.

I think about when her younger sibling comes someday and telling them, “This was Brielle’s room, but we didn’t finish it.” And I don’t like that train of thought. I like the idea of saying. This is where we hoped to bring your big sister. Here are her footprints and this blanket was made special just for her. I imagine showing them who she was and what she was like.

I imagine the days after she’s died, sitting in her room and looking at her cute little things and thinking, she lived, she mattered. Maybe not for long, but she was real. I like the idea of having proof that my daughter existed and meant the world to David and I. We’ve let her fill every nook and cranny of our lives. Why would we let an unused room that we pass every single day go untouched by her?

Antidepressants & Birth Defects

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Solid information on the risks of medications during pregnancy is often hard to come by. Article here.

If you’re taking an antidepressant and are of childbearing age this post is for you. I really don’t want anyone else to have to deal with the loss of their child, especially if it’s preventable.

“The analysis did find an association between birth defects and the antidepressants fluoxetine (Prozac) or paroxetine (Paxil). That included heart defects, abdominal wall defects, and missing brain and skull defects with paroxetine, and heart wall defects and irregular skull shape with fluoxetine. The relative risk increased 2 to 3.5 times, depending on the defect and the medication.”

Prayers

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Please keep me in your prayers. It’s getting very hard to breathe. Draining the excess fluid can cause preterm labor and she could be poked by the needle, especially since she’s a wiggle worm. So please pray that we’ll know what to do when the time comes (which could be very soon) and that she’ll be okay if we have to drain.

Welcome to Holland

~ lovingbrielle ~ 1 Comment

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When you get pregnant, besides the fear of miscarriage, the fear of having a child with a disability is perhaps the biggest fear you have. It certainly was for David and I. How do you take care of a special needs child? What will your life be like? It was uncomfortable to think about. And it was scary, not because the child was scary, but because the whole process was incredibly unknown. We were afraid because of our own ignorance. I would think we are not alone when it comes to this fear. And it’s not something that most people talk about. It’s kind of embarrassing to admit you’re afraid of a situation like that, isn’t it?

Yesterday, as David and I were leaving Dekalb the head NICU nurse (correction: I was misinformed, she is not the head NICU nurse lol) shared with us a very personal and beautiful story as well as this poem, “Welcome to Holland.” As she told me about the poem, I thought that it could not be truer. Our perspective on special children is completely different now that David and I have a severely special needs daughter.

Whereas before it was something to fear, now it is nothing. She’s our daughter, we don’t see anything strange or different about her. She’s just Brielle. The fear of all the work involved with her doesn’t seem like work anymore. It just feels normal. I’m her Mom, if she needs me to clean an open brain dressing, then I will change her dressing. If she needs me to give her supplemental oxygen, then I will give her supplemental oxygen. It’s not so scary.

Love doesn’t work that way. Love doesn’t say, “I can only do this much, but I can’t go any farther than that.” Love doesn’t have limits. And if loving my daughter means that I have to hold her and help her pass peacefully and comfortably, then I will hold her, and tell her it’s okay. I will put on my best face and surround her with as much love as I can.

David and I don’t feel as if we were punished or burdened with a child that is different. If anything we feel blessed. Before we had her diagnosis I was thinking about how I would teach my children french and english. Having a child that is different puts everything in perspective. Sure it would be nice if my children were bilingual, it’s wonderful that we have doctors, rocket scientists, straight A students. But if the only thing my daughter ever does is smile or move her little arms, well, that really is enough.

And really it comes down to, is my child happy? Is my child loved? Yes? Then I have done my job as a mother. There’s so much that the world tells us we need to do to make our kids succeed or do in life. And maybe you’ll disagree with me on this, but those things don’t matter. Life is too short and we really have no idea how long we have with each other.

Brielle’s life, a special needs child’s life, is full of love and innocence. What is better than that? I told David last night, if we have another special child, it’s okay. I’m okay with it. I don’t want to lose another child, but if I get the opportunity to shower another child in love and be equally loved in return, I can do that. She’s such a happy baby, what is there to complain about or be sad about? Holland is just as wonderful as Italy.