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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Monday, October 6, 2014


Our boy can drink.

(I'm just gonna let that sentence sink in for a few glorious seconds.)

It's something we've worked on since Jack gave up the whole eating and drinking thing around a year old. We (appropriately) freaked and took an immediate dive into the world of g-tubes, blenderized diets, and feeding clinics.

With Jack, some things just suddenly click. But it takes YEARS of practice, of experimenting, of trying, of therapy. At the ripe old age of five, I can say with certainty that our boy can drink large amounts of water. Big gulps, huh? Yep. Big gulps.

There's only one problem.

He only drinks for me.

Not for daddy. Not for grandma. Nor for his teachers or therapists. Only me.

We have this little game going where I put a little water down his syringe (we are able to gavage liquids) and then, it's Jack's turn to take a drink. So back and forth we go. Jack doesn't realize, but I am putting the teeniest, tiniest amount of water down his tube. He is doing the big boy work of taking drinks. Ounces upon ounces of beautiful water is going down that throat of his. It's pretty spectacular.

In true preemie fashion I am hoping and praying this is not a phase. My deepest desire is that we have finally taken the giant leap to drinking land, never to return.

Then, the most exciting thoughts. Jack uses his g-tube for hydration. What happens when boy can properly hydrate himself? What happens when he will take a drink from anyone? What happens (please, God) when he independently takes the cup, fills it, and goes to town on that water? Can we finally say adios to the tube?

Only time, friends, and with the realization (from years of experience) that Jack does things when he wants to and on his own timeline. As his mom I am just along for this crazy ride.

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Wednesday, October 1, 2014

Lessons From School Picture Day

Those on the periphery may think that us special needs parents are constantly and completely, 100% of the time, dealing with medical issues, developmental delays, and all the things that make our kids different from typical peers. While for some this may be true, I find myself not necessarily dwelling on all the things that make Jack unique. I've been a big advocate of "my kid is just my kid." A normal day for us probably looks a lot different than the majority, but what else do I know? This is our life and we have gotten so used to it that I often forget. My bubble is my safety and usually I can remain in that safe space.

I don't think of Jack in terms of special needs, micro preemie, cerebral palsy, or any label all that much... until I have a morning like I did today. All it takes is to be around typically developing kids, in an enclosed environment, and someone expecting Jack to "just do x, y, and z, and we should be good!"

Today was school picture day.

A day entirely not up Jack's alley. A big room. Not his classroom. Lots of new kids, adults, smells and noises. A stranger trying to make him stand in a twelve inch square. After Jack not standing in the magic square for picture perfection for even ten seconds, me politely asking if he could please sit while his picture is taken. A chair? Well, yes. Trying to get a cheesy smile when I know for a fact that there are a million other places he'd rather be. A million things he'd rather do. Confusion. Tears.

Why did I even subject him to that? Well, because, it's school pictures! Everyone gets school pics, right? They are adorable. A right of passage. I don't want Jack left out. Special needs won't get in the way of this! I want to be that parent who shows the school picture to everyone. I want to carry around his super adorable photo in my wallet. I want Jack to fit in, just one of the kids. And me, just one of the moms.

And therein lies the truth.

School picture day became so much more about me than about him. He does not care. It's me, his mom, who cared enough to get worked up and shed a few tears of her own about something like school pictures.

Yes, special needs life is hard. It's hard when surgeries come up. It's hard when I long to hear my boy's voice. It's hard when people just don't get it. But sometimes (and what I'm still figuring out) it's my own hang ups, my own feelings of inadequacy, my own dreams for Jack's life that are just projections I am placing on my boy. Maybe I choose to forget special needs as my own coping mechanism.

But Jack? He's good. I make things a lot harder than they need to be. Jack is happy. And he is perfectly fine not having a school photo.  

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