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.
We’re about to leave to meet with a neonatologist. Please keep us in your prayers during this time. This meeting is huge and critical for Brielle’s care.
“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”
One of Brielle’s favorite books is “It Will be Okay” by Lysa TerKeurst. I bought this for Brielle not long after we were given her diagnosis. At the time I was still learning to talk to Brielle and be comfortable having conversations with my belly. It had not occurred to me yet that maybe David and I needed to prepare Brielle for what was coming. Her reaction to this book when we first read it to her was immediate. She was happy and it surprisingly brought comfort to David and I as we read it to her. At times, this was the only book she would respond to and so we would read it, over and over again.
Within a few weeks, I began telling Brielle what was going to happen when she was born and I continue to do this. I tell her how it will be scary. That it will be cold and she might be in pain. I tell her that she is very sick and that she will need to fight hard to stay with Mommy and Daddy, but that if it’s too hard that it is okay for her to go. But I always ask her to hold on just long enough to let me hold her. I want her to be with David or I as she passes. I’ll tell her about the doctors and nurses and how she may not be able to be with Mommy right away, but Daddy will be there, he will be close to her. I tell her to be brave and not to be afraid, that it will all be okay. And no matter what, Mommy and Daddy love her.
I feel like this sweet children’s book helps not only her, but also David and I. The book follows a little seed, who lives in a cozy packet in a cozy shed, and who makes a sweet friend called Little Fox. But then the Farmer (God) takes him out of his cozy packet and puts him deep in the ground. Little Fox and Little Seed are scared and afraid of what will happen. There are two parts that I always love and that even now Brielle just perked up for as I read aloud again.
“Little Fox thought hard for something to say or something to do that would help his friend not be scared. But he was afraid too. ‘It’s different and scary to be someplace new…but it will be okay, Little Seed.’ Little Seed was not so sure. And neither was Little Fox. But the Farmer was good, and the Farmer was kind, and the Farmer was always watching over them. Even when they didn’t know it.”
I often let Brielle know that I’m scared too. And that I don’t want to lose her and I’d do anything to keep her with me. I’ll hold my belly tight and tell her, “But it will be okay, you will be okay, Mommy is just going to miss you.” And I think that’s why I like the ending of this book so much. Brielle and I may be apart for a long time, but one day we’ll be back together again and we’ll have made it through the dark and scary time.
“Together they made it through the dark and scary time, and together they each learned that the Farmer was good, and the Farmer was kind, and the Farmer was always watching over them. Even in dark, messy places.”
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