Friday, November 21, 2014

A Dream About Jack

"I had a dream about Jack last night."

I hear these words quite frequently - from family, from friends, and even from those who have read the blog or maybe heard our story, but don't know us very well.

Today it was one of Jack's teachers. As I was dropping him off at his classroom, putting his coat in his cubby, she excitedly came over and said:

"I had a dream about Jack last night. In it, he fell down and hit his head and then said through tears, "I want my mommy!" And get this! Another teacher had a dream about Jack last night too. Isn't that crazy? He was talking in her dream, too. You know, he is making so many new sounds lately. Maybe he is on the cusp of a breakthrough!"

Over the years, people have had all sorts of dreams about Jack. Dreams where he began walking. Some where he was running. Countless where he was speaking in full sentences. Dreams about him eating a big meal. About him drinking through a straw. And even dreams where he is an adult. 

Some may wonder how I feel about this. Is it hard to hear about dreams that may never come true? Logically, I know Jack will never do some things this side of heaven. But ultimately, I also know he has overcome quite a few obstacles that we originally thought would be barriers in his life. Most of the time when I hear about a dream I get a small glimmer of hope. Of what could be.

So my verdict? I absolutely love hearing about dreams where my boy is rockin' it. I love that someone got to hear his, what I can only imagine is, sweet little voice in a dream. That he was saying "mommy" is just the icing on the cake.

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Wednesday, November 12, 2014

From Head to Toe: How I Prayed For My NICU Baby

Having Jack at 23 weeks meant we spent week upon week in the dark quiet, starring at him in a NICU incubator. I am one of those mind-wanderer type of people and in those painfully quiet moments, I had unlimited time to think as I watched his little body hooked up to wire and tubing and machines. Not surprisingly, I had a very hard time not going to worst case scenario when I desperately just wanted and needed to stay hopeful. On top of this, the one tangible thing I could do - provide nutrition for my boy - was getting nowhere. I was having trouble producing breastmilk after my body was ravaged from preeclampsia and the cocktail of meds that was used to keep me alive.

Like any other NICU mom, I got online to find help. I was willing to try anything. One of the pointers I read was that prayer or meditation while pumping, especially while looking at a photograph of your baby, had been shown to help in production. Well, like I said, I was willing to try anything. I went to the store and printed off a photo of the first time I held Jack. Of the first time I felt his heart beat against my chest. The moment when the quick rise and the fall of his ribs as he took a breath almost took my breath away. The absolute beauty of him.

And while I stared at this photograph of my boy, my heart came up with this prayer, one that I still pray today. It is the sort of prayer you visualize, starting from the top of your child's head down to their toes. It became the thing my mind went to each time I held Jack, each time I woke in the night to pump, and through each grueling hour he spent in surgery. The prayer is quite simple, really, and yes, the focus and details change depending on the medical concern or new diagnosis, but this is what I asked of God, for hours on end. For health and healing from head to toe. It is what I still pray when I have those sleepless nights.

I start with his head. I simply ask "God, please protect his brain as it forms and grows." And from there, I ask for health and healing for his eyes, then I go to his nose, then his mouth, throat, lungs, stomach, digestion, legs, movement, all of it... to his toes. I visualize each body part and intricate system doing what it needs to do to keep my boy alive.

Nothing makes you more aware of wonders of the human body than watching your little one develop right in front of your very eyes. I got to experience Jack from 23 weeks on. From fused-shut eyes, to being able to open those beautiful lids. I watched as his skin went from totally transparent when he was born - I could literally see the blood flowing through his veins - to turn it's gorgeous milky color with a fine layer of hair growing on it. I watched and prayed as his body went through each week of gestation, day by day, often hour by hour.

And along the way, with all of those amazing changes from head to toe, I was praying.

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Monday, October 20, 2014

Suffering and the Preemie Perspective

"Suffering is not the absence of goodness, it is not the absence of beauty, but perhaps it can be the place where true beauty can be known."
This quote stuck with me. I read it weeks ago but keep coming back to it. I had never read a better description of what I was learning in my own life, through my son. His birth, his story, and the beautiful, but hard lessons I take from it.

It is all because of suffering.

Jack's story is not easy and it is certainly not roses. He has lifelong medical issues resulting from a tragic birth. And yeah, in order to survive, we have learned very quickly to find silver linings. To celebrate the ability to take even a breath. Or give a smile. Or conquer a therapy appointment. Instead of huge expectations, we know that it's the small things that bring us joy in this life.

And such is beauty and goodness. I can attest it happens in the midst of, and sometimes because of, horrific circumstances. It shows up when you are desperately trying to grasp the big picture. It shows up when your child is deathly ill, getting meds through a feeding tube. It shows up when surgery after surgery becomes the norm of your child's life. It shows up after a sleepless night of worry. It is in letting others come alongside you to support you, even when you've been hurt by callous actions in the past. It shows up when you choose to believe in God, even when you aren't sure he even exists. As much as I wished it was different, so much growth comes during these times, even when I can't see it, hear it, or feel it. Even when all hope is lost.
Human tendency is to go the opposite direction of suffering. Sometimes it means that we distance ourselves from pain and only join in to celebrate overcoming. Lauding those who beat the odds, or those who have no odds stacked against them in the first place... that's easy, right? And pleasant. It is surely fun to praise a winner - a person, an event, an accomplishment. It may even feel good and beautiful. I am certain there are things in this life that come through no suffering, but are worth celebrating.

But that is not the story I am talking about today.

Those looking for the perfect outcome may not want to read our story. Jack will never be the poster child for "best miracle with no lasting effects of prematurity." If anything, I hope we've been totally upfront with our readers about Jack's medical and developmental issues. We never set out to create a blog world that is different from real life. While it's true I don't share everything about Jack with you, my goal is to not gloss over the suffering in favor of the happy stories.

And please, please don't read this wrong. We adore our good days. We celebrate good things. We share them with you! But the reason we know they are so good? It's because suffering has been a powerful sharpening tool and a very large part of Jack's story. Simply, the quote reminded me that I don't want to gloss over that which makes life most beautiful, just because it is not easy. The more I experience, the more I learn that suffering underlies so much of this preemie perspective that I have come to cherish.

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Tuesday, October 14, 2014

Special Needs Friendships

This weekend I got together, in person, with a mom who just gets it. She has a kid a lot like Jack. Immediately we were at ease. No explanations needed. No vacant smiles covering up confusion or pity. Just lots of nodding of the heads. Laughing. Comfortable. It's so great when that happens.

Part of my personal journey of being Jack's mom has been that much of my support in parenting has come through online connections. Of someone happening upon the blog or by chance, meeting in a private FB group and being like "Hey! You have a 23-weeker? We NEED to be friends." These connections have been life-saving and life-giving. We have swapped stories and advice. We have asked questions. We have prayed for each other through diagnosis, surgeries, and major illnesses. With so much joy, we have watched our kids conquer a whole lot. It has been truly breathtaking and I consider it such a privilege to be surrounded by such wisdom. This group of parents is one that understands, with every fiber of their being, what is important. I know your kids by name, follow your story, and think of you a whole lot.

As Jack has grown up from just preemie issues into life-long special needs issues, my online world has only widened. Truthfully, sometimes the special needs world feels much too big. I hear lots of advice that doesn't always jive. I see a lot of anger. I get the anger, but oftentimes, I am not in that place. I read stories that don't really connect and that is OK. They all don't have to. Many times I skip posts. I don't always want to read about the latest controversy. There's a lot, isn't there? Understandably, I don't enjoy reading about the latest child who was mistreated or about the school that didn't care. It's not because I don't care, it's because it feels insurmountable. I don't want those stories for Jack.

It wasn't until a couple years ago that I finally got together with another mom, in person, who has a kid with special needs. We immediately hit it off. We started to meet regularly. Swapping stories. Catching up. We connected on a level that meant I didn't have to explain everything. We became each other allies. We cared to ask the hard questions, the how are you really doing?, questions. And we did it over a cup of coffee. I could see her face and watch her eyes. Maybe some of you are much better at this than me, but from what I know and what I hear from others, it is really hard to make those special needs friendships. But with only my limited knowledge of them, aren't they so worth it?

I don't know about you, but I need the balance. I appreciate my online community, especially those we have known since Jack was born. You know I love you guys. But I also want the real-life connection. The "rough day. Need to talk. Can you be there in 20?" type of connection. Where being in each others presence is a balm for my soul and not another opportunity to feel different or invisible.

As Jack gets older and his needs become more pronounced, I know I am going to want to know those in my own community, in my own thirty miles radius, who have kids that are going through the same thing. I'm going to need to know which therapist is best or which program I should look into. I'm going to want to talk about my anxiety and fears of Jack living in a small town and know that I'm not alone. Since Jack didn't "grow out" of his preemie or medical issues, I'm going to have to "grow in" and find others doing the same.

Oh. This photo? I just wanted to show you how handsome this kid is getting. Lovin' the outdoors and lovin' life.   
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