Even if there are no good options, you still have to make the decision.

When we left our appointment with the surgeon, we went for ice cream and agreed not to talk about it until we had had some time to process. It took three full days.

We started off just saying some things out loud -- things we were afraid of, things that seemed so unfair. Eventually, details started to surface and shuffle around and settle down where we could see them. We felt ourselves leaning in one direction, but also saw the gaps in our knowledge. 

I did more research. I contacted doctors and therapists with more specific questions. And Kyle and I talked and talked and talked, first with each other and then with my sister and brother-in-law, who are Collin's guardians in our will. Here's what came out of those talks:

When Collin was a baby, we were new to impossible decisions and most of them pertained to Collin's survival. Since then, we've had years of practice making tough calls and when we looked back over them, we saw a pattern: we have aimed for maximum impact with minimal intervention. 

I call it a fortress of support. We build it around and under him with therapy and specialists, but also with down time and nutrition and lots of individualized attention. We try to give him every opportunity to go as far as he can and follow him as he goes (or stays), remodeling his fortress as needed.

With that in mind, we couldn't see doing an incredibly difficult and invasive surgery to prevent something that may never happen. If we lived in the land of trying to prevent scary things that might happen in Collin's future, not only would we constantly be subjecting him to procedures, but we would lose our minds with worry.

And so we decided not to do the surgery.

We are not afraid to do hard things. This is not a way to avoid difficulty. In either instance, we knew we would be accepting a set of major risks on Collin's behalf. These were the risks we could live with.

The Hassle of Keto

Monday, I offered my assessment of the financial cost of the ketogenic diet. Today, I want to explore a much bigger consideration: the hassle.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

I can find olive oil in most places, but I can't go anywhere without a gram scale.

It's important to note where I'm coming from here. Collin uses a g-tube to eat, so palatability is not a huge issue for us. His diet is blended from whole foods and is dairy free, grain free, and soy free.

So, let's start off by calling it like it is: the ketogenic diet isn't easy. Here's why.

1. The food. Every meal and every snack on the ketogenic diet has to be precisely calculated and then precisely measured. There is very, very little leeway.

2. The time. All food takes time to prepare, I get that. But the calculating and the measuring involved in this diet really adds up. Then there's the matter of time windows. Meals need to be completed within a certain amount of time so that the body metabolizes the food in its proper ratio. Meals and snacks also need to be spread out over a proper amount of time to keep blood ketones level.

3. The complications. Various blood and urine levels have to be checked regularly to make sure the diet isn't having any adverse effects. You need special IV fluids when you're in the hospital. Managing illness on the ketogenic diet is one of the more complex things I've ever tackled. The list goes on.

4. The lack of flexibility. For us, there is no Hey, let's change our plans and stay out longer. If Collin's food isn't with us, we have to go home. Twice in his entire life, we have extended a trip, and then only because I had packed a gram scale and so could cobble something together without a Vitamix. 

But. But. But. 

The hassle is 100% worth it. And it's our normal. We rarely think about the hassle and, when we do, we realize that we have the far better side of this tradeoff. 

Caregiving 102

Let's say you think you have passing grades in Caregiving 101. Your self-care is fairly consistent and you have a good idea of how to get back on track when things inevitably veer off course. High five, friend. That's a big deal.

BUT. You're not quite caught up yet. Because when you're caring for someone for the long haul, you can't do it well without thinking hard about priorities.

I like to call it The Big Picture. It's a vision for your life and your family's life together  - a vision you can see better when you take a big step back. The Big Picture requires the knowledge you picked up in Caregiving 101. What is important to you and your family members? What are your personalities? What do you want to make time for every day? Every year? What would you like your child's experience of childhood to be like? 

Now look, I realize that these can feel like very loaded questions when you're living in the land of developmental disabilities and/or medical complexities. For me, the reaction goes something like this: Sure, I would LIKE for Collin's childhood to not include an endless parade of therapies and medical appointments and social stress. But I don't have that choice, do I? I encourage you, though, not to stop that line of thinking, but to push it further. WHY do I want those particular things for Collin? Because I want his childhood to be happy and carefree, full of free time and adventures. Why?

I want him to be a kid, not just a patient or a client. Now we're getting somewhere. That sounds like a Big Picture. 

How does having this kind of vision impact your life as a caregiver? Well, let's take the example we just explored. Part of my family's Big Picture is that Collin have a full childhood with lots of opportunities to just be a kid. So, when the opportunity for a new kind of therapy arises, I have a metric against which to measure the pros and cons of the opportunity. Will this therapy enhance Collin's experience of his childhood? How so? In what ways might it detract?

Don't forget: your Big Picture includes everyone in your family, not just the person receiving extra care. Because a healthy family must function as a unit, everyone's needs are important. Does this mean you don't have to take your child to a doctor's appointment because you're tired? Of course not. But it also doesn't mean you should set aside your passions so you can do at-home therapy with him every waking moment.

The alternative to determining your Big Picture is being run ragged by other people's expectations. There will always be someone who thinks they know what's best for your child, how to fix things. But ultimately, you're not trying to fix anything. You're trying to live a life. And any specialist, regardless of expertise, lacks the one piece of information vital to truly making the best decision for your child: they cannot see the Big Picture. 

Only you can see the Big Picture for your child and your family. Armed with the strength and creativity and energy that come from self-care, you can live out that Big Picture day by day. And that is real caregiving.

Caregiving 101

Caregiving 101-.jpg

On the surface, I'm an ace caregiver. I have a spidey-sense mama instinct for Collin's needs, wants, and feelings. Try to keep me from fulfilling one of those needs and see what happens.

I slowly realized over the past few years, though, that I was missing something foundational. It felt like I was muscling through my life as a caregiver. Like I was doing advanced course work without having a good understanding of the basics. Like I had skipped Caregiving 101. 

Now I know that Caregiving 101 is called Self-Care. And it's not for extra credit.

Despite what you might think - what you may have been told - you do not test out of Caregiving 101 by becoming a parent. Just because you're keeping all the wheels on your wagon doesn't mean you passed Caregiving 101. However much you'd like to just move on and forget about it, you're going to have to go back and take that class eventually.

Because I am not naturally skilled at self-care and I can pretty much guarantee you're not very good at it, either.

Now, this is not where I tell you how to care for yourself. Sorry. This is where I tell you that you must learn how to care for yourself and then - here's the kicker - do it. 

I will give you some suggestions of where to start, though. Based on my own clumsy, halting journey, here are some jumping-off points.

1. Take an honest look at your basic physical needs: food, water, movement, sleep, clothing. Are you meeting those needs? This is not a joke. It's very, very common for caregivers to neglect their body in a shocking manner. Are you eating regularly? Are you eating something other than junk? Do you use your muscles for something other than working and stressing out? Are you getting anywhere near the amount of sleep your body is asking for? Do you have some clothes you don't mind leaving the house in? I'm not talking about overhauling your life to achieve a goal weight. Screw that. I'm talking about treating yourself like a human being.

2. Once you have learned how to meet your basic needs, try to figure out your emotional needs. This is going to vary widely, of course. Spend some time figuring out your personality: what makes you tick, what makes you want to run screaming in the other direction. Think about your relationships and your alone time. I've been working on this one for years and I only recently learned that I'm a highly sensitive person (HSP). Talk about a game changer. There are many good books and tests you can use to help you figure out this aspect of your needs. There are skilled counselors to guide you through the process one-on-one. Modern Mrs. Darcy is a blog that has some great resources on this topic. 

3. Identify your creative needs. Yes, this is a thing. And it's a much bigger deal than many of us know. Maybe your creative expression is cooking or painting or growing things or organizing (people? ideas?). I love to write and edit and knit and make cocktails, so I try to make sure I do a little bit of some of those every day. Meeting your creative needs will bring you life and energy; it will tune you in to beauty and hope. Which puts you in a pretty good position to be an effective caregiver.

CAUTION: This is where many of us tend to laugh in an unfunny way. We roll our eyes or make martyr-ish comments about the impossibility of self-care at this stage in our lives. I'm going to go ahead and call you on that one if you find yourself headed there. I know it's a cover up for overwhelm and heartache. At least, that's what it was for me.

But hear me: you don't have to do this all at once and you don't have to worry about getting it right. Just pick one thing. And that one small thing will make the next one easier and more desirable. 

Everyone you love needs you to be good at self-care. It may seem like just drinking enough water or protecting your quiet time or reading a poem, but in fact it's a powerful and necessary gift to them and to yourself.

How Much Time Should I Spend With MY Kid?

Our average distance away from each other.

Our average distance away from each other.

As I shared last week, bluegrass redhead's recent series on the science of parenting got me thinking about who I am as a mother and to what extent parenting advice applies to my situation in raising a son with a rare disease and multiple disabilities. 

Sarah's series kicked off by asking How much time should I spend with my kids? - a loaded question for any parent - and cited recent studies to make two important points:

1. Mothers currently spend more time with their children than at any other time in history. And yet we still feel guilty for not dedicating more time to our kids.

2. Studies show no positive effects from spending a greater quantity of time with children. Rather, quality of time seems to be the determining factor.

The point here is to remind us that mommy guilt is often unfounded. Our kids do not need our perpetual presence and get equal (if different) benefit from alone time and time with others. As Sarah points out, "Just because I feel like I'm not doing enough for my kids doesn't mean I'm actually failing my children."

But what about MY kid? The one who can't move from one place to another on his own? Who can't yell for me when he needs something? Who can't play independently or with other kids in the typical way? How can I apply this knowledge to my own situation?

Daddy time is mandatory around here.

Daddy time is mandatory around here.

First, we should note that the more-time-does-not-equal-greater-benefit finding only held true for ages three through eleven. Why not before and after? I think Sarah wisely links this increased need for maternal attention to the intense emotional and physical needs particular to those times. 

Do you see where I'm going with this? On one hand, this is a truth that is not true for me. Collin will likely always need more help with his physical needs and more attention for his mental and emotional needs. And, not to toot my own horn, but I'm the expert in all of those things. Which means lots of together time for me and Collin.

But on the other hand, this truth is still true for me. Because I'm not the only one who can meet Collin's needs. And I shouldn't be the only one.

From a purely practical standpoint, it is crucial for multiple people to be adept in caring for Collin precisely because he requires more and specialized help. And that's not going to happen if I never give anyone else a chance to do it.

From a mental, emotional, and social standpoint, it is necessary for me and Collin to spend time apart. Other people see things in him I miss. They try things I wouldn't try. When he gets 'alone time' - which, in our case, means time undirected by me - he gets a chance to explore his environment and physicality and thoughts however he chooses. And in spending time and energy cultivating my own skills, interests, and relationships, I grow into a better version of myself. By spending less time with him, I become more for him.

Collin gets a good amount of 'alone time'.

Collin gets a good amount of 'alone time'.

When my husband first started making me leave the house for vacation days, I would literally stand on the stoop with tears in my eyes until he shut the door. Left to my own devices, I would never leave Collin's side. I know where that comes from - fierceness of loyalty, of protectiveness - but that doesn't mean it's the best or healthiest choice. As I have listened to the friends and family who encouraged (and forced) me to strike out on my own and give Collin some space, my relationship with my son hasn't suffered in the least. It has thrived. 

My educated guess is that this study from the Journal of Marriage and Family was made up of typically developing children. In a way, I wish that distinction was clearly outlined, because it just isn't the same for those of us with medically and developmentally complicated children. But I also recall Shauna Niequist's words, remembering that "[Parenting} all comes down to close observation, willingness to take advice, ability to try something new when all the old things have stopped working." And with that in mind, I'm able to see the wisdom revealed in this bit of research: that whatever the challenges and however it might look in a given situation, it is both possible and important to make time for independence.

Next time: if quality of time is more important than quantity, what does that look like in a daily life that is infused with the challenge and complexity of rare disease or disability? Hint: it doesn't involve therapy.