Brielle’s Life

Welcome to Holland

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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.

Our Meeting with the Neonatologist

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We had a wonderful meeting with Dr. Armand. He was kind and receptive to answering the questions he could, for those questions he couldn’t answer he forwarded us on to a pediatric neurosurgeon in Atlanta. David and I so appreciate his honesty and his willingness to give us an idea of what is to come and what they can do. I cannot begin to explain how much it means to me when these doctors and nurses are kind and compassionate. They have heart and it makes me feel at ease. I can trust that my daughter will be treated well, with compassion and respect. I couldn’t ask for more. And after yesterday’s disappointment it brought immense joy to David and I today to know that there are wonderful and kind medical professionals out there. We feel that God has put us exactly where we need to be and we are very grateful.

Mexico Independence Day

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Wednesday Dennis G. had a layover in Atlanta and came out to see me and Brielle. We had lunch at The Marietta Diner (very tasty!) and caught up on things going on back home in Texas. It was so great to see him. The last few times I’ve been in Texas I either haven’t seen him or I’ve only seen him for a couple of minutes, so it was very good to see him again. For those that don’t know, Dennis and Rene have been a part of my life for the past twenty years. I grew up with them and their boys and they feel more like family than family friends. Scott and I grew up playing in the New Mexico Rockies and beating each other up back home. Him and Robert were the brothers I never had and I love their family dearly. David is also extremely fond of Robert as well, Robert is a computer nerd just like David. David always says, “Oh, I like Robert, he’s a cool dude.” I guess that’s guy talk for he likes him?

Wednesday was also Mexico Independence Day. Again, for those that don’t know, I am a born and raised Texan and I took my fair share of Texas history. It grieves me that my children will not be Texans, really, it pains me. So, I’ve decided if they can’t be born Texan they can at least be raised Texan. Since Mexico’s independence from Spain is a big part of Texas’s own history I decided that I should educate David and Brielle about this day.

We went to Pappasito’s, which is about the only place in Atlanta with homemade tortillas, so of course we went there for dinner. Brielle loved her fajitas and onions! And she really liked the mariachi band too! She had a lot of fun and wiggled around quite a bit. When we came home, I read them the story of Father Hidalgo and we discussed Mexico’s independence from Spain. David was sad that Father Hidalgo’s life didn’t end well, he was surprised by that. Such is war and revolution. Overall, I think Brielle had a great day today! Even if it ended with the story of a man dying.

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Do Something

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“I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, ‘God, why don’t You do something?’
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, ‘God, why don’t You do something?’
He said, ‘I did, I created you’

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something”

The Hard Truth About Anencephaly

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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.