Tuesday, March 24, 2015

In Order To Heal

Many parents of micro preemies are incredibly wounded by their experience. Often it requires professional help, like therapy, especially if one is diagnosed with PTSD.

I am no different. I have struggled and overcome and struggled and overcome some more. I am still learning, still figuring it out, and still trying to glean every bit of wisdom from those further along this journey than me.

Two things happened last week that reminded me that we so need each other in order to heal.

I got an email from a new preemie mom. This is not entirely out of the ordinary, but this one struck me as different. I could tell this mom was struggling with her emotional health. She mentioned PTSD. She mentioned issues with bonding with her baby. For those on the outside, let me just tell you - this is entirely normal. When you, day in and out, think your baby is going to die, it is very difficult to create a bond and let yourself go to that place of emotional attachment with your baby, because you think any moment could be their last. It takes an intense amount of trust and letting go to bond. She also mentioned that she was getting help from a professional. I responded by saying "you are so far ahead of where I was!" I encouraged the steps she was taking. I told her attachment will come. Each day is a HUGE victory. I was honored she would email me and I hoped what I wrote was what she needed to hear.

A few days later I saw something on social media, someone using the word "special" in a negative way and it didn't sit well with me. I responded with a question to other special needs parents, asking if I was right to feel hurt about the use of  "special" much like the word "retard" is used. I got the most wise response. A stranger said:

"Mom of 2 kiddos with special needs here. One thing I have learned on this journey is that it is a hard, long road, and I need people on my team to help me through. And the quickest way to lose people from that team is to make them feel they can't win with me. Nitpicking every word into some imagined offensive intent will do that for sure. I have learned to extend grace when no malice was intended, and save my righteous indignation for the really big battles, because you need that energy. Sorry, but we don't have exclusive rights to the word "special." It can have positive or sarcastic connotations, and that has no effect on our kids unless we choose for it to."

Drop. The. Mic.

Hi, I'm Jessi. I'm still learning here. And I don't know it all.

Some pretty simple words were written last week, but they were profound. Yes, I'll admit some were cliché, but that's just the territory on this micro preemie journey. We need each other. We need to be open. We need to get help. We need to take it a day at a time. We need to surround ourselves with the positive. It is a long, hard road. It's not easy, but it's worth it. A rollercoaster, I'll tell ya! One day at a time.

Maybe these phrases are overused. Maybe they are stereotypes. But maybe, just maybe they have the shred of truth in them that we need to hear.

Maybe last week was filled with a bunch of clichés, but you know what? I feel healthier somehow.

P.S. I'll leave you with handsome Jack, king of the forest.

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Thursday, March 12, 2015

Waiting: It's Just What We Do

Spring is here. In these parts that means over 50 degrees with no snow that sticks. Naturally, Jack is back to what he does best - outside greeting each car that happens to drive by our house in the woods. We live on a dirt road and that dust kicks right up and he just giggles, squeals, and is genuinely so happy a car went by. The faster the better. Sometimes I think he is imagining cars driving by, because we haven't seen one in hours, but he's still bustin' up like it's the most hilarious thing in the world. This kid is full of joy. He would sit out there for hours if we'd let him. It's pretty much his most favorite place, even though I keep trying to convince him that it's our backyard that's the bees knees.

I left you last with my fears about kindergarten. I wish I could tell you we've got the whole thing figured out, have found a perfect and safe place for him with awesome teachers, but after multiple emails, phone calls, and getting advice from everyone under the sun, we are still in the "who knows?" zone. So we wait.

Much of Jack's life we've been waiting. Waiting for him to take a breath. Waiting to see if he'll make it through the next minute, next hour or through the night. Waiting to cut loose from the hospital. Waiting to say goodbye to oxygen. Waiting for surgery. Waiting for a diagnosis. Waiting for the first step. Waiting to hear his voice.

We are pros at this whole waiting game, but you never quite get used to the uncertainty that comes along with it. It's an inner anxiousness where we go about our normal day, do our normal things, but it's always there, under the surface. Sometimes, I'll admit, I find myself forgetting how good we have it and my prayers become "can't just this one thing go smoothly? Must everything be a struggle?"

Then I remember that the very best things in my life have come from struggle. I would argue that Jack's story represents this to me, but it is true for so many things, for so many of our stories.

And so we wait. Wait for word on kindergarten and for cars to drive by. It's just what we do.

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Wednesday, February 25, 2015

The Hard Weeks

I have the tendency to want to highlight all the magical and happy moments of our life because, well, there are so many. People on the outside often look upon a situation like ours with pity and pretty much all the time I want to scream it from the rooftops - I really, really love our life. No need for pity here. Both Jon and I are doing things that fulfill us. We are chasing dreams. And we have the most amazing, perfect, living and breathing child who seems to be the icing on the cake of this whole adventure. So, no. Pity or pats on the back or condolences are not needed and I don't go looking for them.

You may wonder why I don't often write about the hard things. There are many reasons, but mostly because I don't naturally gravitate toward the negative in this micro preemie situation. I am well aware that many like Jack do not survive even 24 hours after birth. How could I be anything but grateful for his life and for our existence together? Plus, as the years go by and highlighted by our own experiences, my personal ethic regarding human life is expanding. I have proof right in front of my eyes that all life is precious. It's not cliché or political talking points in our house. There is innate dignity in all human life, no matter ability or deemed worth.

I also fully understand that many need to talk about the hardship. Because, you guys, it is hard. Talking about it and admitting that we need help or support is part of the healing process. It's how we get through. The rare times I have let you in on the hardship, you have been there.

A perfect storm was brewing last week and it took the wind out of my sails. Parenting a child with special needs is draining to the very core. I'm not going to list off all of Jack's medical or neurodevelopmental issues, but let me assure you, it is rough. And amidst this, we have been trying for months to find the right place for our guy to go to kindergarten.

Just so you know - This is not about a mom being emotional about her child going to school for a full day. I get that. I will be that mom. But this is different.

This is about a mom worried for her child's physical safety. This is about a mom worried that someone could take advantage of her non-verbal child. This is about letting go of control and praying to God that someone will be there to make sure our boy doesn't fall down the stairs and break his neck. This is about getting the right people in place so our child can eat while at school, be nourished, and not refuse food or choke to death. This is about a child who has cortical blindness and finding a way for him to learn may be difficult. It will take someone who really cares. This is about finding people who are not just afraid of a diagnosis they see on a page.

Finding this school, this group of people, it is so hard. It is stressful. So I'm feeling all the things this week.

And then I read this. Our state's home for developmentally disabled adults is absolutely failing its residents. These are people like Jack who will never be able to live independent lives. Residents with mothers and fathers, sisters and brothers, human beings who deserve lives of dignity. Horrific abuse is occurring (much more than what I've linked here) and I just sit and read about these kinds of stories taking place so close to home and think about Jack. I told Jon we have to do everything while we are living to make sure Jack doesn't end up at this place.

Sometimes it is too much. Most weeks are full of beauty and life, but other weeks are hard.

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Wednesday, February 11, 2015

Romanticizing That Which We Do Not Know

I texted Jon the other morning: "off the top of your head, what advances in modern med have enabled Jack to be alive?"

He quickly replied: "ventilator, steroids, shunts, gtube, preemie IV food, incubators, vaccines, Synagis."

I read his list and thought, man, that is just scratching the surface. A text cannot contain what it took to get Jack to where he is today. The combination of medication, the equipment, the surgeries, the interventions, the transfusions, the antibiotics. The list goes on and on. I easily forget the amount of medical care Jack received from his first breath. And the science behind it all baffles the mind. How fortunate we are to live in a time when our son is alive because of these things! Just 30 years ago there was hardly a case of someone like Jack surviving. Today, because of these advances, micro preemies are living full lives.

You may wonder why I asked Jon that question. It's because as Jack's mom, I was mad. I was reading where a mother was lamenting her childhood and how bad it was that all her illnesses were quickly treated with antibiotics. And she was going to do things right this time around and tell us all in the process what "right" means. Instead of throwing antibiotics at an illness, her children would get a more natural or "wholesome" approach to their well-being. How wonderful for her to have that luxury. Reading further, she was praised in the comments for her wisdom and for her raging against "the man." Then she tried to sell some essential oils.

Friends, I have some righteous anger burning. There is something going on with our middle to upper-class American society. I am seeing it EVERYWHERE. We have lost our perspective. Things have been too good and not enough of us have seen life with medical struggle, without things like antibiotics. We have romanticized that which we do not know.

When we were getting our so-called over-abundance of antibiotics in the 80's, scientists were perfecting those antibiotics for premature infants. These are babies born with zero immunity and only live because of antibiotics fighting off infection.

Further, there are many places in this world that have zero access to even the simplest of antibiotics. Mothers are desperate for them as they watch their children die from preventable disease. And not only antibiotics, but medical care in general. Oftentimes, women walk 15 miles for a single vaccine for their child.

How privileged are we to complain about modern medicine. How shortsighted we are.

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