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.
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.
I won’t go into details, but today was a bit of a defeat for another anencephaly mom. It breaks my heart and it makes me boiling mad when doctors refuse to care for these babies. It burrows into my heart when they say these babies only have reflexes and aren’t really living. I think what upsets me most, is that they completely turn their backs on the families in these cases and refuse to learn. They blatantly refuse to hear about these babies. And they close their minds to knowledge.
I mentally recoil and wonder, but aren’t you supposed to serve the sick? Aren’t you supposed to advance scientific knowledge? Aren’t you supposed to…?
The questions build in my mind and then I’m reminded that we live in a cruel world. And no matter how advanced we like to think we are, or how progressive we may think we are, we really are no better than barbarians at times.
We deny aid to the wounded, the sick, to those who are helpless. We deny life when it makes us uncomfortable. We deny love and compassion to those that are less fortunate. We live, constantly denying the tragedy around us. We tell ourselves we’re enlightened and that we are better than our predecessors. I look into the eyes of some of these doctors and see nothing but emptiness, cruelty, barbarity. I see a monster. Someone who is glorified as having all the answers and being a miracle worker. But behind the facade I’m met with a very ugly truth.
This isn’t a truth we’d like to think about our medical professionals. We’d like to think they are honorable. And there are honorable medical professionals. Medical professionals who do not fit the description I have previously written about. Ones who fight hard for what is right. And to those doctors I give my deepest thanks and admiration. However, there are many who don’t deserve their title. And there are far too many of these doctors “treating” anencephalic babies and their families.
Sometimes I wonder why bother with trying to advance research and change with anencephaly. And then something like today happens and I’m reminded that, yes, the majority of these babies die. A small, small percentage survives. And there are vast differences in the quality of life of those survivors. But they lived.
The babies who only lived inside their mommy’s tummy, lived. They mattered. Their stories deserve to be told. They deserve to be treated with respect and dignity. The mothers, fathers, grandparents, aunts, uncles, friends of these babies deserve to be treated kindly and with compassion. And those are things that are worth fighting for. Fighting for what is right, is worth it. These babies, alive or dead, are worth adversity and setbacks. They are worth our love. Their families are worth our compassion.
We can live in denial and pretend that we have become a more advanced people. Or we can acknowledge our shortcomings and change. We can change how we treat each other. The world doesn’t need more tragedy, it needs more love and compassion. And I’m not going to stop fighting until I’ve seen the world change.
Imagine learning your child has been in a terrible accident. Doctors all over the world tell you your child is terminal. According to these doctors, your child’s life is no longer valuable, your child is, “incompatible with life.” These same doctors turn their backs on your child and leave you to grieve your living baby.
Now imagine learning that a few survived the same diagnosis. So you dig. You read and read. You question those that have survived. And then you figure out the common factor in survival, something no doctor has done or even tried to do.
But you have no way of knowing if your child has that common factor. You have eight weeks to not only find a surgeon to treat your child. But you also have to figure out multiple ways to save your child, in the event that your child does not have the common surviving factor.
Now, knowing all of this, imagine you only have eight weeks left with your child and at any moment your child could die unexpectedly. So you spend as much time as you can loving your child, giving your child everything you have to give, all the while using the rest of your time in study.
Can you imagine the fear? The guilt? The panic?
“What if I can’t figure this out? What if my child dies right before I solve this puzzle? Am I doing enough? Am I spending enough time with my child? What if it doesn’t work? Am I wasting precious time with my child? What if my child dies before I get the chance to say goodbye? Can I do this, can I save my child?”
Does your chest feel tight? Because mine does. And this, this is my life. A constant struggle between pure joy and love for my daughter and constant growing, gnawing fear.
Will I ever know if I gave her enough time? Will I be able to save her and make the time I sacrificed with her worth it? Self-doubt, fear, and guilt are my constant companions as we get closer to Brielle’s due date.
Tonight I asked David, “How do I live without her? If I save others with this diagnosis, but not my daughter, how do I live? She’s all I want. This is all for her.”
Each day I am a bit more anxious than the day before. And tonight, after I’ve tucked Brielle in for the night, with a bedtime story and a lullaby. I find myself wondering how many more nights I’ll be able to read to her and hold her tight. Then I stumble upon this poem, which I’ve always found both heartbreaking and comforting.
“Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.
Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.
Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?
I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.
All is well.
Nothing is past; nothing is lost. One brief moment and all will be as it was before only better, infinitely happier and forever we will all be one together with Christ.”
by Henry Scott Holland
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