When Your Medically Complex Child Is Never Really 'Out of the Woods'

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mother holding young baby girl Parenting is hard. There’s so much to worry about. Throw in complex medical conditions and what’s considered “hard” about parenting changes. The things at the forefront of the mind are different for parents of medically complex children. The stresses of parenting a child without medical conditions certainly exist, and they’re real and valid. For parents dealing with medically complex children, those typical worries still exist, but they have to take a back burner to more basic, primal needs that keep the child alive.

The term “medically complex” is a vague umbrella term used to describe a wide range of medical conditions that present unique challenges and require special care on an ongoing basis. There are no official parameters regarding what conditions fall under the umbrella of “medically complex,” but chances are if a child requires ongoing care with a herd of doctors and therapists, he or she is medically complex. Many medically complex children have diagnoses of genetic conditions, diseases of major organs and neurological disorders, and many have a collection of symptoms with no diagnosis.

Parenting a medically complex child means not only providing the usual care and nurturing but also becoming an expert on whatever medical conditions affect the child. It means learning how to operate medical equipment, perform medical procedures, use the various tubes and devices attached to the child and acquire an entire vocabulary of medical terminology. It also means preparing for any of the potential emergency situations that could arise and knowing that danger of these emergencies happening always lurks in life’s shadows.

Parenting a child with any type of special needs changes the way the mind works. The blinders come off, and nothing can ever be looked at the same way. Acknowledging the darker side of life does not make parents of medically complex kids pessimists; it just means they’re doing their best to cope with the often ugly and terrifying realities that accompany their children’s medical conditions. From an outsider’s perspective, it can be difficult to understand that no matter how good a medically complex child looks, he or she may never really be “out of the woods,” so to speak. Medications can keep symptoms at bay, and special diets can help control the damaging effects of disease. Feeding tubes can ensure adequate nutrition and aid in overall health. Insulin pumps can keep blood sugars stable. Congenital conditions can be repaired surgically. All the medical interventions parents of medically complex children learn to administer can keep their children in a state of optimal health for their conditions, but all of that can change at any moment. In the blink of an eye, things can go from calm to complete disaster.

This is why we’re stressed out and why we can’t completely relax. This is why we may find it hard to listen to people talk about the more typical concerns of parenting and why we sometimes seem flaky or uninterested. This is why, no matter how good things are going, we have a hard time not living like we’re waiting for the other shoe to drop. Even when everything appears to be safe, we never feel like we’re out of the proverbial woods because mentally, we can never really leave the woods. It’s all we’ve known since our medically complex children entered our lives, and we can’t erase the memories we’ve made there. We see terrifying and devastating things happen to the friends we’ve met while living in the woods, and we understand those things could happen to us too. Next time, it could be us.

If we seem a little overbearing, overprotective or paranoid, know it’s for a good reason. Just as any parent dedicates his or her life to caring for his or her children, we’ve dedicated our lives to caring for our children, but what that requires of us is different. Living in the woods is not what we planned for our children and certainly not what we wanted for them. Since it’s beyond our power to change that, all we can do is do our best to enjoy the scenery, keep living and create a safe and happy life for them, even if it is in the woods.

This post originally appeared on Feeding Raya.

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The One Thing I'd Change About My Wife's Body

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A few days ago, my wife sent me a message on Facebook, along with a link to Andrea Woslager’s “I Hated My Body After My Miscarriages Until My Daughter Said This.” Her message read:

“So I read this yesterday, and it kinda felt like I’d been punched in the gut. This isn’t all me, but it feels a lot like it. And no, I don’t want to talk about it.”

I read Andrea’s story, and in a lot ways, it’s our story too. Nic and I married in 2006, and a few months later were overjoyed when she found out she was pregnant. Everything went perfectly, and our beautiful son Finn arrived in August 2007. Finn grew wonderfully, speaking early with a precociously wide and deep vocabulary. As soon as he could form the words, he was asking us for a baby brother or sister. He didn’t care which, he just wanted one, and we desperately wanted to grant him that.

Nic got pregnant again just before Finn turned 2. We found out early but decided to wait to tell him until we passed 12 weeks. One day, while we were waiting for that milestone to tick over, we were all sitting together on the living room floor, and Finn put his hand on Nic’s belly (which was flat as a board) and said “I think there’s a baby in there.” Our eyes widened in surprise, and I almost broke silence to tell him he was right. It was so hard not to, but I’m glad I didn’t, as less than a week later, at 7 weeks, we lost the baby.

I won’t go into detail, but it took us a while to get over that. Eventually we did, and almost two years (and many, many continuing requests from Finn for a little brother or sister) later, Nic was pregnant. Again, we decided to wait out the 12 weeks before we told Finn, and with aching slowness, those 12 weeks passed. When we got there, we were both so scared of jinxing things that we waited another week, just to be sure – then, at last, we told Finn he was going to be a big brother. We were all indescribably overjoyed. Finn started picking names (“Ninja” got vetoed early).

A few days later, Nic came to me and said something felt wrong. We went to the doctor, who said everything seemed OK. She said she could schedule an ultrasound if we wished.

We wished.

That’s where Andrea’s story kicked me in the gut. We had that same moment with the ultrasound technician – the awful, hollow silence where the heartbeat should have been, the anguish as the technician’s face dropped, the knowledge sitting in our bellies before she even took a breathe to tell us. The appointment with the OB-GYN was worse. She told us that, given the point the pregnancy was at, the safest path forward was for Nic to be induced and deliver the 14-week fetus.

We had to wait a week before that could happen, and for a few days, we bunkered in, closing ourselves off from everything but each other and our beautiful Finn. Telling him was the hardest thing we’ve ever had to do, and we all grieved deeply. Finally, the week went by, and Nic was admitted to the maternity unit. The midwives were wonderful, caring and solicitous, but that night, watching my beautiful wife go through labor for a baby we were still grieving was awful.

I am to this day in awe of the strength she has.

We never really got to the point of trying to get pregnant again, but we decided to let things take their course, and if it happened, it happened.

For two years, nothing happened, and we began talking to Finn (who for months after the miscarriage would occasionally see a baby in a store or at the park and start silently crying) about the likelihood that he wouldn’t get to have a little brother or sister. He, like us, was sad about it but understood. We started getting rid of all the baby things we’d stored in the garage. I took several loads to local charities and then found some stuff I thought Nic might want to hang on to.

“Go through this, and pull out anything sentimental,” I told her. “I’m giving whatever you don’t want to charity tomorrow.” Getting rid of it all felt cathartic, as if we were finally turning a corner on the grief.

Then next morning, Nic said, “I’m not sure, but I think maybe I should take a test.” We had a few left over from earlier maybes, but this time, the line was there, clear as day. We went to our doctor, and Nic did the urine test, which came back positive.

We both freaked out. We’d finally come to grips with not having another child. Were we too old? Was six years too big a gap between siblings? And the big one: If the worst happened again, could we make it through intact?

We limped through those first 12 weeks, both of us half-expecting the worst. We – again – waited a little while more before telling Finn. When we finally told him, we couldn’t wait for the expected joy at the news, but what we got was a subdued, “What if what happened last time happens again?” We hugged him hard and told him worrying about the future was a sure way to rob ourselves of joy right now. It was exactly what we ourselves needed to hear.

After that, everything went to plan, and Dash arrived a week before his big brother’s 7th birthday. Finn and Dash have adored each other since the moment they met. Finn will do literally anything to make his little brother smile, which isn’t too hard; Dash thinks everything Finn does – including walking into the room – is comedic genius.

Here’s where Andrea’s story – and Nic’s empathy with it – gave me a new understanding.

Occasionally, in the months since Dash arrived, Nic has said to me that nothing has changed for me since our boys have been born, to which I respond that – like for every parent – everything has changed. My world is a completely different (and immensely more wonderful) place with them in it. She – not always but sometimes – has responded, “No, I mean your body. It’s just the same as it was before we had them.”

I didn’t really understand what she was saying because for me, neither had hers.

I never meant to disregard her feelings, but honestly, I just didn’t get it. I admit I’m not overly bright.

After reading Andrea’s story, here’s what I want to say to my wife:

If I didn’t understand how you felt when you were telling me that, it’s only because your body is as beautiful to me now as it ever was. Yes, it’s changed. Those marks you see as damage, I see as the ticket stubs for the boundless joy you’ve brought into our world.

Those marks are our wildly imaginative and ferociously intelligent Finn, who has no idea how wonderful he is. They’re our beautiful and mischievous Dash, who at just 7 months old has an attitude that suggests he could achieve world domination (if only he could get his hands on a hundred thousand warriors) and who must go to sleep every night with aching cheeks from smiling so damn much. Those marks are a tribute to the mind boggling gift you possess to create life, and as Andrea said, to keep it safe until it’s ready to enter the world.

Every day that gift makes my heart feel like it’s going to burst, and just when I think I can’t possibly fit any more love for you or our boys into it, my heart grows just enough to fit it all in.

Those marks are a reminder of all the joy you, and you alone, are responsible for bringing into our little world. They’re also my pledge: I’ll do everything in my power — every day I’m lucky enough to spend by your side — to repay you for all the joy you’ve brought into our lives.

Finally, I would say this:

If there is one and only one thing I would change about your body, it would be for you to be able to see it the way I do.

a mother looking at her baby son

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The Time a Stranger Left a Post-It for Me at My Daughter’s Hospital

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My twins, Reid and Madeleine, were born prematurely at 25 weeks gestation after a difficult and much-too-short pregnancy. They weighed less than 2 pounds each, couldn’t breathe on their own and couldn’t even open their eyes.

It was scary and heartbreaking and terrifying, and things seemed to go from bad to worse – my son had a heart murmur that almost needed surgery, and then my daughter developed a brain bleed that absolutely did (twice). There isn’t a day that goes by that I don’t think about what happened to us, about the pain and suffering and endless worry.

But some days I think about other things, too. Some days I think about Janice.

The days leading up to Madeleine’s first brain surgery were almost certainly the most difficult days of my life so far. I was ill-prepared, and I didn’t know quite how bad things were. We were in a new hospital, different from the one I’d given birth in that I had come to think of as the babies’ “home,” and I felt unwelcome, unfamiliar, like I was always getting in the way. And of course, I was scared to death that something might happen to my beautiful, amazing, sick little girl, who I loved beyond words, even though we still technically weren’t supposed to meet for another two months.

In the new hospital, parents had to leave the room during shift change and rounds, which pushed my already-overly-emotional self over the edge each day. Twice a day, I would mope to the cafeteria, sit down at a table by myself, and burst into tears.

During one of those shift change mopes, a woman approached me.

“I hope you don’t mind me coming over here, but no one in this hospital should be left to sit and cry on their own. Would it be OK if I sat down?”

I learned that her name was Janice, and that she was there with her husband and 10-year-old daughter, who needed surgery to correct her scoliosis. She asked about Madeleine, and I told her the entire story, breathlessly, from beginning to end. It was the first time I’d ever shared it completely with a stranger.

Janice sat with me for a long while, letting me tell her all the little details about what I’d been through over the past month. In truth, I don’t remember a lot from that conversation, but I do know that she taught me two incredibly valuable lessons that day that I try to remember whenever I have the chance to meet another human being who feels like their entire life is falling to pieces around them.

The first is that they need to talk, and they need to be heard. I so desperately needed to vomit out the story of what happened to me, about what happened to my children, about what I had lost, what I was afraid of, and how much I still loved my babies with all my heart despite everything that had gone wrong up to that point. I needed someone to try to understand, to have empathy, to listen without judgment.

I needed someone to tell me that it was OK to feel this way. That it was OK to be terrified and want to scream and cry and beg the Universe to somehow make everything magically OK. Janice gave me all of these things, freely, expecting nothing in return.

The second is that I needed to be reminded that in no way did I have to go through this alone. I thought I’d be fine, I thought I could handle it, but that day, in that cafeteria, I couldn’t. I had people, but I didn’t think I needed them to be there. Janice knew better.

“You need to call someone. Who do you know who will come down here right now and be with you? I’ll call them for you if you’d like, and I’ll sit here until they arrive. Trust me, if they love you, they will be happy that you called.”

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The next day, after I’d been picked up and taken home the night before by a girlfriend I called at Janice’s insistence, I headed back to the hospital. As I was making my way to Madeleine’s room, the girl at the front desk stopped me.

“Are you Madeleine’s mom?” she asked. “It looks like you made quite the impression on somebody yesterday.”

She handed me a large paper Starbucks cup full of coffee, with a yellow Post-It note stuck to the side. “She dropped it off early this morning and it’s cold now, but I just had to hold onto it until you got here so that you could see it.”

I’ve kept that note on my fridge ever since.

“Alana, Hope today’s a better one. Love, Janice.”

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To Those Who Try to Comfort Grieving Parents With, 'You Can Have More'

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My friend lost her daughter a couple of months ago. Within a short period of time, she’s become my dearest grieving momma friend. It’s a tie so strange — it can make you feel like you’ve known a person for years. You skip so many stages and go straight to the heart stage. Grieving moms understand a pain no one should. We can speak volumes to one another in a sentence. We can move mountains with a simple “You’re not alone” because the truth is we’re never alone.

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My sweet mama friend Beth and her baby Liv.

This sweet, sweet momma friend of mine celebrated her daughter’s birthday on the beach last month. Her little girl would have been 4, but she passed away a month before. While my friend was on the beach releasing balloons, a woman and her daughter walked by and offered to take a picture. When my friend told them why they were releasing balloons, the woman said to her, “You guys are so young. You can have more.”

Unfortunately, this wasn’t the first time I heard those words — myself or secondhand from another grieving mom.

While I believe there were good intentions behind the remark, I still have something I want to say, and it all sums up to this: children are irreplaceable. 

I cannot count the number of times I’ve heard a story from another grieving mom where someone told her, “You can still have another” as advice to get through their child’s death.

Let’s be totally honest now — it’s ignorant; and yet, it’s a thought that may have crossed my mind a year ago if I were giving a grieving parent advice.

The change in my perspective occurred after realizing I might lose my son and before I held him as the breath left his lungs.

This is the boy I loved as soon as I saw two pink lines appear on a pregnancy test early one hot July morning. I sat nervously as my husband and baby were sleeping, and as the lines appeared, so did a little spark of love. At that moment, a deep, unbreakable bond was created between a mother and her child.

This is the boy who was placed in my arms and then taken right away. For the first time, I realized the universal, unspoken fear of every parent could become my reality.

This is the boy who grew and healed with a strength that could not be rivaled.

This is the boy who searched for my voice across the room and whose face lit up at the site of his momma, the one who knew him like the back of her hand.

The boy who fit perfectly in my arms with his face nestled into my neck.

This is my boy.

The one I’ve cried a million tears for. I will cry millions more until we’re reunited.

My boy. My son. My child.

He is irreplaceable.

And I say this to all of you… Each child is special. We love them uniquely. If we’re blessed with enough time with our children, we get to know their personalities, their quirks, their sweet side. We get to know their favorite things to do — whether it’s how they like to be held or what their favorite foods are. We learn them and we love them, and a place grows in our hearts exclusively meant for them, and when they leave our arms, that place still stays, and it aches.

Trust me, it aches.

Maybe over time the ache lessens, but it’s still always there, and it sits with an emptiness, with the lack of their presence, a longing to hold them tight and a hope for the day when we will be together again. Maybe over time, the ache quiets, but that place in our hearts made for them, it stays forever. Our children are irreplaceable.

In our hearts. In our families. In this world, our children are forever irreplaceable. No matter how many more children a person can have, there’s no possible way to replace the void another child left. No possible way. They’re forever ours, no matter if they’re still in our arms. They are irreplaceable.

They are forever irreplaceable.

This post originally appeared on Scribbles & Crumbs.

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Why It’s Good That This Photo Once Made Me Cry

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There are things you just don’t expect when you think of your life plan. Having a child with special needs is one of them.

When Reagan had her metabolic crisis and we were in the hospital for two weeks, some Disney characters came around to take photos with the kids in the hospital. The photo we got was so depressing, at least for me. First of all, it looks like it’s from the ’80s, because it’s a Polaroid, so there’s a look of dinginess about it. Secondly, even though Rob and I are smiling, the amount of pain we were in was practically unbearable. I guess we put on a good face for the camera. When it developed, I looked at it and just cried.

“Are all our photos going to look like this now? With all sorts of machines and tubes or wires?”

I would describe our entrance into the world of special needs parenting as a violent push over the edge of a high mountain. One day, Reagan was a typically developing child, and the next she was a 13-month-old with the skills of an infant. That’s violent. That’s drastic.

We’ve come a long way and are accepting of our circumstances (most days). But I’d like to highlight that it took time navigating the path toward acceptance of our new normal. It’s certainly possible other people could roll with that punch and just keep going, but I think they would be remiss in not validating feelings of grief, sadness and loss. Doing that has allowed Rob and I to have a healthy view of each other, our family and a greater understanding of who we believe God is.

That’s why today… when I look at this picture of Reagan in her walker, I’m not sad. I’m filled with joy.

I know the toil that went into getting this far. I bet if a stranger saw us walking Reagan in her walker, we’d get the pity stare.

“Oh… that poor family, that poor girl; that’s just so sad.”

No, it’s actually amazing. It’s actually a visible miracle. That is what it is.

A longer version of this post originally appeared on Rob & Anne-Marie.

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Why We Don't Know How to Answer the Question, 'Are You Gonna Have More?'

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Are you gonna have more?

It’s one of those obvious, elephant-in-the-room type questions. Sitting there, begging to be asked.

Kind of like when you want to ask your 30-something single friend if she’s met anyone promising. Or how you want to ask a childless couple when they’re going to start having kids.

We’re curious beings, and certain situations beg certain questions. I realize as my daughter Julia has gotten older, we’ve become one of those situations begging one of those questions.

Do you have kids?

    Yes, we have a daughter!

Oh, how old is she?

    She is 7.

Oh, 7? So what’s the deal, are you gonna have more?

Are we gonna have more?

The easy answer would be “Oh, I’m not sure,” or “Who knows what the future holds,” or “Nope, we’re done.”

But the real answer is more complicated.

The real answer is that we do have more. Or we did have more… I don’t know how to say it.

We have, or we had, two more. Two more babies who would now be 5 and 2.

Seven. Five. And two.

They were girls. Or they are girls… I don’t know how to say it.

Joy and Pearl. Julia’s little sisters.

I think they would be blondies like their big sister — strawberry blond with blue eyes. I sometimes imagine the three of them lined up next to each other in the back seat of our car on our way to somewhere fun. Maybe Mimi’s house. Oh, what a sight that would be. I wouldn’t be able to look in the rearview mirror for long; my eyes wouldn’t be able to take it.

Joy and Pearl.

Sometimes I just want to say their names.

Joy and Pearl.

Who would probably be so funny like their big sister. Three girls with the best laughs in the world. With curly hair like Mommy and long legs like Daddy. The three of them together would run us ragged in the best possible run-ragged kind of way. We would look at them and laugh and say, “Oh you three!”

And we would love their relationship and say things like “Sisters are the best!”

And I would marvel over them, over the three of them. And my heart would feel like bursting.

Like it does sometimes now.

More?

We did have more. Or we do… I don’t know how to say it.

They just aren’t here. We had them only briefly. Almost as soon as we knew of them they were gone. But don’t mistake “brief” for “insignificant.”

Their lives, though brief, were significant and meaningful. Just not lengthy. Not as long as we selfishly would wish. But we did have them. And we do still have them, we just have them differently… I don’t know how to say it.

Not a day goes by I don’t think of them. Wonder about them. Long for them.

Not a day goes by I don’t wish my more were here. Right here. With us. To be seen and touched and held and known.

But after losing Pearl we wondered if our hearts could do it again. So we stopped.

The sight of still little bodies on the screen hurt so much. So we stopped.

And cried “no more.”

Are you gonna have more?

Well… we did. Or, we do… I don’t quite know how to say it.

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This post originally appeared on I’m Julia’s Mom.

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