To the Person Who Doesn’t Want Their Medically Fragile Child

Dear Parent,

I saw the other day your Google search “I don’t want my medically fragile child,” brought you to this blog, and my heart broke. It broke for the pain you are undoubtedly suffering through. It broke for your child, who desperately needs someone right now. It broke for the fear, and the anger, and the frustration you are facing. It broke for the guilt that can swallow you whole when such fears are vocalized.

I’m not here to feed that guilt.

I’m not here to tell you how wrong you are, or wonder how a parent could ever say that about a child.

I know, that in the deepest, darkest recesses of our minds, we have all said and thought things of which we are not proud. Did I want a medically fragile child? No. But I wanted my medically fragile child. So I’m not even here to tell you that I understand. Because, I don’t. Not really, but that’s OK. If everyone understood everything, we wouldn’t need blogs, right?

I say that so you’ll know that I’m telling the truth. This isn’t sugar coated because I’m afraid of offending someone. I do that on a daily basis, so I have no worries about that. This is simply the truth, for me.

Being the parent of a medically fragile child is difficult. Terrifying. Exhausting.

It’s also incredibly rewarding. Fulfilling. Challenging.

None of us were given a manual on how to understand our children, or how to best deal with doctors. None of us came into this with a complete and complex knowledge of conditions and remedies.

We’ve studied, researched, cried, and rejoiced. We’ve read journal articles and reached out to others on the internet. We’ve mourned the loss of what could-have-been and we’ve celebrated the milestones our children never-should-have-met.

We argue with and simultaneously depend on doctors. We’ve cried when given a diagnosis and then resolved to prove.them.wrong. We’ve come to term with some of those “labels” and others we have, indeed, obliterated. We have honorary medical degrees.

Few of us asked for this. Even fewer of us were prepared for it. We weren’t “chosen.” We were made. We made ourselves.

Many of us would change “it” in a second if we could. Some of us embrace our children- medical needs and all- and would turn our back on a do-over. Regardless, we love our children, no matter how we feel about their condition.

We love the way we notice the tiniest milestones. We love the way we take nothing for granted. We love the way our children find joy regardless of their surroundings. We love the way our children teach us to love– without condition, without hesitation.

Yes, some of our nights are filled with tears.

But our lives are filled with joy.

Pure, life-changing joy.

And that’s the truth.

With all my heart, I wish you the best. I wish you peace. I wish you the clarity of mind to make the decision that is best for everyone– for you, for your child, for your family. I wish you the ability to see past the condition and find the child. I wish you the strength to love yourself.

I wish you all this and more.

Charlotte’s Mom

New Year Resolution: Understanding Those Around Us

There are scattered throughout the internet various “What NOT to say to a preemie parent” lists. They are good reads. I suggest you email them to every family member and friend when you first find yourself in the NICU. Because, believe me, even those things on the list that you think “Surely no one would ever, ever say that to me,” will be undoubtedly said to you.

But I’ve yet to run across a list of things that Preemie Parents (yes, we are now capitalizing that term) can do to help those friends and family members. And I know why. Because we’re thrown into this world of prematurity and its chaotic and overwhelming and a little terrifying. We have no idea what is going on, and we can’t seem to tell up from down.

So of course, it shouldn’t be our job to educate everyone around us.

But guess what?!

It is.

Just as you didn’t understand anything that was going on, your friends and family members don’t have a clue either. And to make it worse, it’s not even happening to them. So they can’t even gain understanding through osmosis. Or whatever it is that Preemie Parents gain understanding through.

So we need to help them out a little. Give them a bit of a break now and then.

Here’s my list of 5 ways Preemie Parents can lighten up a bit, and help out those who are trying to do the right thing.

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1. Speak Up.

Seriously, I know your baby is in the NICU. I know you are stressed and you cannot deal with anyone or anything. I know that you just want people to know what to do– but they don’t. And they won’t. Because everyone deals with this differently. Some love to hear congratulations. Some Preemie Parents think Congrats is a bit morbid. Those who want to love and support you don’t know which of those people you are. If you want visitors at the NICU (and your NICU allows visitors) mention it to people when they ask about the baby. “She’s doing really well right now. I’m at the NICU from 0800-1600 everyday, if you want to stop by, we’d love for you to meet her! And I could really use the company. Monitors don’t talk back. Usually…” or “Thanks so much for asking. She’s actually having a rough time right now, so we are trying to limit the number of people in the NICU with her. I’ll let you know when her social schedule opens up again, though.”

2. Find a Filter.

Find someone, a friend, a family member and tell them. Tell them that you want to talk about your baby. Tell them you don’t want to answer questions about his or her prognosis. Tell them that visitors are welcome to drop off their sanitized gifts at such and such location. Then have that person spread the word. Let others know that they are your go-to person about questions regarding the baby. Use a blog or a carepage as your filter. When people ask you, politely say, “I’m exhausted by these questions, but I love that you are asking. So-and-so is actually the person to talk to. He can do it without turning into an emotional mess.”

3. Thank people.

There are going to be certain people who totally step up. We lived with my in-laws when Charlotte was born, and they totally rocked. My mother-in-law practically raised Caleb while Charlotte was in the NICU. I never once heard her say anything about being too tired to help, or too busy to watch him. She always rearranged her schedule to pick him up or be with him for the evening. She’s the mother-in-law you all wish you had. My father-in-law visited Charlotte religiously. He would go with us, he would go without us. He’d visit for a while and then take Caleb home so we could stay to visit. He would stop on his way home from work. He would go after church. When I say he visited, I mean it. More than that, he always knew what was going on with her. He talked to everyone about Charlotte, his co-workers, his friends, his congregation. Charlotte was his granddaughter from day one. And we love him for it. These people, those who step up in ways you can never imagine, they need to be thanked. They need to hear that you appreciate what they are doing. Because unfortunately, there are going to be people who don’t step up. There are going to be people who don’t talk to you anymore, who don’t really care all that much. They might be your friends. They might be your coworkers. They might be your own family. And it sucks. Big time. So for those who do make an extra effort, let them know it is appreciated. You don’t even have to send a card (although the Post Office would appreciate it if you did) but just say thank you. It’s what your mother would want you to do.

4. Don’t Compare.

It’s easy to watch other people *ahem, other mothers* and think, “What the heck is she complaining about?!!?” Especially since its usually some gripe about how much “reflux” their child has and how difficult it is to deal with. Or how tired they are from staying up at night with their kid. Or, blah, blah, BLAH, you want to shout. I know, take a deep breath. Here’s the deal. They don’t know any better. And how wonderful. How incredible is it that they don’t know the horrors of the NICU? How wonderful is it that they have not sat down with their significant other and discussed whether or not to remove care from their child? It’s an incredible blessing. And while there are some complaints that should be responded to (“I’m trying to get my doctor to induce me at 36 weeks because I’m so TIRED of being pregnant!”) none of them should be met with a you-haven’t-suffered-like-I-have tone.  Because, first off, you have no idea what they have suffered. Caleb was a full term kid and we had a lot of issues his first 18 months. Just because a child hasn’t been in the NICU doesn’t mean they aren’t difficult and it doesn’t mean that mother isn’t exhausted. And second off, no one likes to hear their complaints be one-up’d. It’s just tacky. So jump in when you need to: trying to bring on labor before 39 weeks, exposing a baby to illness, etc, but do so with tact and grace.

5. React to Intentions.

People are going to say some horrific stuff. Honestly. I had people tell me that they would never, ever abandon their baby in the hospital (Charlotte was in heart failure and dying at the time. Thanks for that.). I’ve had people, perfect strangers no less, ask me why we would put so much time and money into a child who “wouldn’t do anything anyway.” So yes, it will happen. It is, however, up to you to decide how you will respond to it. For me, I have found that it is much easier to try to discern the offending speaker’s intentions over their language. Not always possible, I know. Sometimes, because you are so dumbfounded as to why anyone would ever think it was OK to say what they just said, and sometimes because you can’t tell if they are really so ignorant or if they are actually cruel enough to say that on purpose. It can be a difficult thing to interpret. But try. You’ll find that people are really just grasping for what to say. I had a very dear friend say “Well at least you don’t have to endure 10 months of pregnancy,” and I was able to step back and realize that she was just trying to find something–anything– comforting to say in a situation where there really wasn’t any comfort. I’ve had other people say the same thing and I’ve been incensed. Intentions mean a lot. When possible, react to their intentions instead of their words, and you might find yourself hurt a lot less.

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In the perfect world, this list wouldn’t be necessary. But this world isn’t perfect, and we are going to deal with a lot of people who simply don’t understand. And given that we are the ones so desperately seeking to be understood, it seems only fitting that we try, for a moment, to understand those who wish to support us along the way.

Change of View

Image from Blackbird Ink Photography

I’ll be honest. It’s been a rough couple of weeks for me. I’m not sure why, but I’ve been in a funk. A “my-poor-baby-deals-with-so-much” kinda funk. It could have been the J-tube change. It could have been the ileus. It could have been the writing for the March of Dimes.

Image from Blackbirg Ink Photography

Most likely, it’s the Physical Therapy student who has been attending our PT sessions. Don’t get me wrong, I (as the wife of a former medical student) completely support students being involved in appointments. I think it is incredibly important for students to get their hands “dirty” while still being observed. I think they need to really see what it is they will be doing– I think it is vital for their education. But at the same time, I should probably not attend these sessions. Our PT is wonderful– absolutely wonderful. She’s kind and empathetic and loves the children with whom she works. And yet, she has to teach her student, so she spends the hour pointing out Charlotte’s weaknesses, her trouble spots, the way she compensates incorrectly, the ways she fails to keep up with others. Our PT does this with as much grace and tact as possible, but it’s still difficult to hear.

Image from Blackbird Ink Photography

And so, for the past two weeks, I’ve been in a funk.

Until two days ago, when I spoke with a family who just welcomed a 24 weeker into their family. The following day, they had to make arrangements for his funeral. This family, who only held their baby for a moment–their child who weighed barely over a pound, was picking out a casket.

I also talked to a mom whose baby spent a year–365 days–in the hospital before he died. He came home for two weeks, a lovely two weeks of hospice. This one year old never slept in the crib his parents purchased for him. Never used the diapers they had been given, never played with the toys purchased as shower gifts. She talked about how she spends her day, dreaming that he is still apart of their lives. It’s too painful to look outside, and see the bench she was sitting on when he died in her arms. Instead, she spends her day thinking of him laughing as he goes down the slide, or giggling as his sister chases him around the yard. It’s what she has to see to grieve.

image from Blackbird Ink Photography

Suddenly, my gripes about Physical Therapy didn’t seem so important.

My frustrations about the pain and suffering I go through as I deal with Charlotte’s special needs seemed a little misplaced.

My pity party seemed ugly, and my whining, even to myself, was getting old.

In the grand scheme of things, we have it more than just pretty good.

We have it really good.

Really. Really. Good.

That Mushy Love Thing

Dear Charlotte,

You’re growing up. I deny it, but it’s true. You are learning so many, many things: how to sign “ball”, “more”, and “puppy”, and definitely how to sign “all done.” You scrunch your nose up and scowl at me when I tell you to stop doing something. “Doesn’t anyone tell you ‘no’?” her occupational therapist always asks.

Umm, no. No one tells you no. No one.

Did you just tell me, "No?"

You’re playing peek-a-boo and are never quite sure what you should do with your hands after you take them away from your face. Inevitably, you applaud yourself. As you should, my dear.

Peek-a-boo

You babble away for long periods, and then will sit quietly for hours, not making a single sound. You love to watch your brother and want to get involved in every.single.thing he is doing.

Your hair is out.of.control. We both need help. You continually pull any device used to to remove the hair from your face out of your hair. This has to stop. I’m told it will, just about the time you go off to college. Perfect.

You are slowly losing doctors– no more cardiologist! (Which reminds me, I need to schedule your ophthalmology appointment). We’re starting two bolus feeds a day through your g-tube, and hoping that in a few months we can successfully transition to g-tube feedings. When we placed that tube a little over a year ago, I had no idea we’d be so dependent on it. But we are. And I’m grateful that it is an option. I’m grateful that we don’t worry about every ounce you gain or lose. I’m grateful that you have thighs the size of Manhattan and I’m grateful they are just so ticklish.

There are so many things I’m grateful for, baby girl. I’m grateful for the friends and family we have, the people who love us so much, and love you even more. I’m grateful for their support, for their constant commitment to you. I’m grateful for your cheerfulness, for your overwhelming love of life.

Mostly though, I’m just 100% in love with you. And I’m grateful for that. Our start was a rocky one, and we’ve loved you with more fierceness than I ever imagined. But that every day kinda love, the I-want-to-snuggle-up-with-you-and-never-stop kinda love, well, the NICU just makes that hard. The tubes and the wires and the monitors and the thousands of people telling us what to do, it just makes it hard to have that simple, sweet, soul connecting kinda love.

But we have it baby girl. We do.

And it ain’t going anywhere.

~Momma~

Holiday

In less than 100 days, families across the country will celebrate some type of winter holiday. In less than 85 days, (fortunate) families in America will celebrate with a Thanksgiving feast, hopefully surrounded by family and friends.

But in 58 days, our family will celebrate something of our own holiday. We’ll join with the March of Dimes and celebrate the first ever World Prematurity Day on November 17. 2011.

In San Diego, California alone, 10.8% of all births are preterm, meaning close to 5500 births a year never reach term (50,623 births per year). Approximately 3,500 babies in San Diego each year are born at a low birth weight and over 9,200 pregnant women receive late or no prenatal care during pregnancy. Even more devastating? Over 250 families in San Diego bury their children each year before they reach their first birthday.

That’s 250 mothers and fathers, at least 500 grandparents, and untold numbers of siblings who never see a child take their first steps or say their first words. Who never get to pick out a backpack for the first day of school, or watch that child in an elementary school play. That’s 250 classmates, friends, and teammates who are not impacting your own child’s life.

Now let’s expand that. What about in Los Angeles? Las Vegas? Salt Lake City? Phoenix? Denver? Dallas? St. Louis? Chicago? Milwaukee? Philadelphia? Washington DC? Tampa? Boston? Seattle?

What about in Paris? London? Dublin? Moscow? Berlin? Hong Kong? Johannesburg? What about in villages you have never heard spoken of before? Or cities with which you are intimately familiar?

What about in your town?

What are we going to do about it?

It’s not just some unknown threat. Prematurity is the number one killer of infants. Studies released this week show that premature children have a higher risk of dying in childhood up to age 5. From ages 6-17, that risk evens out with full term children. But here’s something that’s a bit frightening: in young adulthood, ages 18-36, prematurity comes back as a factor that greatly increases one’s risk of death. You never outgrow prematurity. One can adjust, one can learn to compensate, but you never outgrow it.

We’re not just talking about something that might happen. Prematurity does happen. It happens to everyone. To those who receive prenatal care, and to those who do not. To those who use drugs, and to those who do not. To those who have had full term children and to those who have not. To those who read every.single.parenting.book and to those who do not.

It happened to me. I lost nearly half of my pregnancy to prematurity.

It happened to my daughter. Born at almost 24 weeks, she spent 26 weeks in the NICU before her first discharge home. More weeks inside of an intensive care unit than in the womb.

Prematurity affects my son, my husband, my parents, my in-laws, my aunts, my uncles, my grandparents, my siblings. They have not only watched us experience this world of prematurity, they themselves have had to experience watching their granddaughter, or niece or cousin or friend go through the experience of prematurity.

Prematurity affects you.

So what are you going to do about it?

Join with us in celebrating World Prematurity Day.

Visit you local NICU, take the nurses some food and give them hug from me. Tell them how much they mean to the families who are affected by prematurity.

Support the March of Dimes. Research from the MOD provides insights that are invaluable to helping preemies survive.

But survival is not just for preemies, parents need help surviving as well. Support other foundations such as Graham’s Foundation, and Friends of Maddie, both of which support families by giving care packages to parents of preemies.

Make a donation to Miracle Babies, which helps provide financial aid to parents of children in the NICU. I know times are tough, but $20 really can change a parent’s life. Knowing that someone out there knows of their struggle can be the light that gets them through the day.

Donate a $15 gas card to your local NICU and have them give it to a family who drives a great distance to see their children. Ask your friends, family and co-workers to do the same.

But more than that, let’s start talking about this. Let’s make it a national and worldwide discussion. Let’s start fighting prematurity the same way we fight heart disease and breast cancer.

Sign up for Bloggers Unite, and on November 17, write a blog post on prematurity. If you have a premature child, share your experience. If you don’t, write about what it is like to watch someone else go through it. Every view point is valid. Write if you are angry, if you feel blessed, if you are confused and if you feel confident your child will be fine. Write if you have lost a child, and if your child has survived. Write if you work with preemies or if you have never even met one. Just write. Share the word. Spread the message.

In the amount of time it has taken you to read this, at least four children have been born prematurely. Four parents have watched their child taken away to be evaluated by a neonatologist. Some of those parents will hear that their child is perfectly fine, that all is well. Some may watch their children rushed to the NICU. Even still, some may hear that there is nothing else that can be done.

But there is something that can be done. We can unite. We can reach out, we can touch others and help them to know that they are not alone, not forgotten.

Don’t just read this and move on. This is your responsibility. This is your fight.

We have to be the ones to fight–because babies shouldn’t have to.