What I have been considering lately…

I’ve started writing three other times, posts left unfinished for another day. But some more pressing thoughts keep taking over. I’ve recently been sharing my diagnosis story, and while that is important to share, my thoughts keep coming back to the length of time I’ve been without medication.

Seven months. This is the longest I’ve gone without medication since I was diagnosed in 2008. While I believe medication breaks can be important and effective in calming the nervous system, this break was unintended and is now weighing on me. The medication I was on was an injection, intended for monthly administration (thanks to my fearless husband for doing it for me). The effects often last longer than a month and my body was responding in a way that I was able to spread the injection out to every 8 weeks. So, with my last dose having been in February I was sure I was still covered until about April. I had some bloodwork in the summer and my immune cells were still suppressed, so while I remained leery, I was also confident in knowing the treatment was still in my system.

Recently, I got updated lab work and every test showed all my cells in the normal range and my bloodwork was the best it has been in years. And that is terrifying. What a wild mind game that is huh? Most people pray for “normal” bloodwork, but for me it means I am unprotected, my immune system has free rein to attack whatever it wants, whenever it wants. And that is the scary part.

I have zero defenses up against my own body.

At the start of the year I began have some uncomfy symptoms that were fairly unexplainable and I just continued to monitor and track them. When I went in for my routine neurologist check up I discussed what I had been experiencing and they immediately referred me to two separate specialists and scheduled multiple follow up appointments. Turns out the medication I was on has some rare side effects which may have been the cause of my symptoms. Following this appointment all I could do was roll my eyes and sigh many times over, because if nothing else throughout my chronic illness journey, I’ve learned that I experience all the rare side effects. At this time I was told to immediately stop the medication while I waited for further tests and appointments, which we all know will take quite some time.

I met with the specialists, and one of them gave me answers-helpful answers though discouraging. This side effect can be somewhat managed and does not have to be the reason to cease my meds. The second specialist said they were seeing something’s in line with my symptoms but that more testing is required and it is likely not due to my medication. So, while I wait for more tests, more appointments and more answers, I am caught between wanting to celebrate the fact that I likely don’t need to make a medication switch; and at the same time process and grieve that I may gather a new diagnosis throughout this whole process.

The in between feels unmanageable sometimes. I work daily to stay grounded in the idea that I am doing all that is within my control, but am continually reminded that with illness, so much of my body is out of my control. Every headache leaves me fearful, and each sensation is a reminder. I am always brought back to the idea of uncertainty and a desire to seek control, the idea of forcing myself to sit in uncertainty and be okay with not being okay is true mental gymnastics, while doable, it is not fun. Zero out of ten, would not recommend.

Well, fast forward to this last week and my follow up neuro appt. I have more lab work to do, more imaging and more decisions. At this point I’m stuck between the option of two, maybe three, medications – pending what these tests show. For full transparency sake, I am sick of these choices, I am sick of these tests, and honestly sick of this (these) diseases. My husband said to me, “given all you’ve dealt with this last year it is a wonder you don’t have any new disease activity!” And while that statement is more than true, it is also unsettling because my lesion filled brain fears what will happen the longer I go without my meds. The longer it takes to make a decision.

For now, I will continue to get the testing done, because the way my OCD brain works is that I need to do it all as soon as possible so I can know exactly what is going on and learn the exact course of action and execute the plan exactly as I need to, and as I can. Is this healthy way to look at it? Maybe, maybe not. (Right Erin?! Right!?!?)

So, I will keep drinking all the coffee I can find, I will keep hyperfixating on learning and growing and changing in the ways I can control. I will invest in every pain relieving cream and the best heating pads possible. I will continue to curate my wardrobe to have clothes that fit my body’s needs and I will focus on the nourishment I can’t handle.

And I will forever focus on enjoying each day that feels good to me, and trying my hardest to pace during harder days, rest during impossible days, and please somebody get my kids to sleep through the night so I can finally get a restful sleep.

It’s been 18 years

It’s been 18 years.

Eighteen years since my official diagnosis of MS. I’ve gathered diagnoses and acronyms since then. Most people collect albums, or knickknacks but not me, I collect diseases and disorders.

It’s expected or assumed that with this much illness under my belt it must be fine, I must be okay because hey, look at me, I continue to show up. But, through the years I’ve learned so much about existing, about illness, about mental health and about how to show up (or not show up) for myself and for my illness. Some lessons learned the hard way, don’t get me wrong. And others learned through unintentional strength and forced resilience.

The culmination of all my diagnoses has taught me one of the most challenging insights, both physically and mentally; that is importance of continually showing up for myself. This manifests in many ways and how I show up changes based on the day, and sometimes the hour. Without playing the role of martyr, I will say nobody will be there for me the way I need moment to moment and that is no fault of their own. However, nobody can be there moment to moment if I am not there for myself. If I am unable to pause, assess my wellbeing and identify my needs, I am then in turn unable to express this to anybody else. If I don’t intentionally, and often, review my task list, my goals and my own abilities, I then cannot be vulnerable in sharing with others my challenges, my needs or my boundaries.

Constantly having to think about effort each day will require is very often daunting, and most days I do not want to think that much, let alone think about myself that much. But, in growing up with chronic illness I find the days I don’t do this I struggle more with isolation or loneliness, and my mental health slips into a decline.

All that being said, another lesson learned is to have a plan, and a backup plan, and a back up to the back up plan. Where I struggle the most with this one is that many of my diagnoses require multiple plans and those plans don’t always mesh with each other. On a good day I can assess and establish two or three plans based on my physical abilities for the day, considering pain level, fatigue level, dizziness or nausea and constantly checking the weather to accommodate for temperature dysregulation and a need for comfort. But on a rough day (because yes they happen, and they happen frequently) I have to account for my mental health as well. These other plans have to include extra steps including “oh shit, where did I leave my meds, did the timer go off and did I already take them,” what system is in place to make the routine make sense “WHERE DID MY SHOES GO?”

But, wait when we get there my thought loops will likely include, but are not limited to: can I drive separate, what if they’re annoyed by me, what if I’m annoyed by myself, can I find a bathroom, ugh germs, did someone just cough, I need to text my bff, I can’t text her, where are the kids, is that person going to kidnap them, where is the little one, did I lock my car, I don’t have anything in there worth stealing, I’m anxious, I’m uncomfy, my legs hurt, I should sit down, I can’t sit down who will help me up, did I drink my electrolyte, when I stand up again it will make me dizzy, I should just stay standing and lean on something, but nobody understands, adulting is hard, being perpetually ill is hard, sick sucks, I don’t feel well but do I ever actually feel well, when was the last time I actually did feel well, I think I was 15.

It’s hard, it’s all hard, and even good days come with their own levels of hard and these lessons are just two pieces of a the bigger spoonie puzzle, leading to a third lesson, but not a final lesson by any stretch of the word.

This lesson being that with all this time, I have been able to learn my body, my mind and my needs and have been able to really listen to and trust myself. Sure, I have days where I hear myself but I disregard every rational thought and every productive thing and just shut down, crash out or bed rot. But in learning to trust myself I know I can take those days, and be sure not to live there. For every bad day there is, I know there will be more neutral or good days. And on the neutral or good days I hear my needs and I honor them. I move slower, I give myself comforting and nourishing foods, I take rest and I connect with others; I find movement that makes sense and I validate my suffering. Some days require a full battery, but with a million plans in place I’ve curated a life that can go on with lower battery power- I will never be the energizer bunny, but I will never regret choosing each day’s plan based on what I need in the moment.

So, in my 18 years since my first official diagnosis I have come to appreciate my slow days, I have come to find humor in my doom piles, and I have come to learn that an impulsive haircut will never change my life but it sure will give me the dopamine i need to get me through a particularly rough flare up.

These are the Things I Think About as the Seasons Change

So much of my time is spent talking to people about how exciting it is for the seasons to change and for spring to come. So many people say that when the sun is out they will finally feel better, or they will finally be able to relax, to reset.

But that’s typically not the case with chronic illness.

With chronic illness, especially with autoimmune diseases, the changing of the seasons means the changing of the symptoms.

And so begins the next round of my favorite game-is this a flare, the flu, a new symptom, a trigger food, a bad day, or my new norm. This is a fun challenge most spoonies know all too well. And with this game comes the ever coveted prize of a reminder of how out of control we truly are in our bodies.

For me, the changing of the seasons wreak havoc on my nervous system, causing my symptoms to flare in unpredictable ways. And speaking for myself, I usually don’t realize my body is going haywire due to the season changes until well into said season change. This is, in part, because each season affects me differently.

Spring is one of the harder ones for me to adjust to. It means damp air and frequent fluctuations in temperature within days, even hours. Because of this I am often achy. The pain that my illness brings can only be described as if I stuck my finger in an outlet; it’s like an electric shock throughout my nervous system. It doesn’t help that with my hair loss and regrowth some days it looks like I actually did stick my finger in an outlet (think Cynthia doll from Rugrats for any millennials following along). And not only pain, but weakness and fatigue make the days feel unpredictable. I also have an inability to regulate my own body temperature so the constant up and down of the air outside means a constant battle with the thermostat, and in turn my husband at bed time.

All humor aside, these symptoms are really challenging and can bring about mixed emotions regarding most people’s positivity of season changes.

Along with this though is the reality that spring does bring more sunshine, and with it more hope. More hope for time outside which can be very healing for some people with chronic illness. It can also bring more opportunity for hobbies and activities that foster more social interactions. Again, speaking only for myself, it is much easier to navigate and deal with some of the negative symptoms if I can be outside, social and miserable instead of cooped up and cranky alone.

All of this to say, not a single thing in a spoonies life is easy, straight forward, or predictable. And oftentimes, not a single thing is manageable, bearable, or truly relaxing (more to come on lifestyle adjustments next).

So, as spring arrives be patient with yourself and know that even if it hurts, get yourself outside because there is no use being inside and alone, if there’s an option to be cantankerous and social outside. And wear sunscreen.

These Are The Things I’ve Thought About Lately

An update on previous thoughts:

Recently I have had multiple people share with me how “strong” I am, or how hard I am working and the pride I should feel for living in such a way that I continue to push, and to fight, and to try, and to work, and to exist with Multiple Sclerosis, and other chronic illness or conditions, some of which I am in the process of being tested for.

I argued these sentiments with loving kindness (spoken like a true therapist).

I don’t necessary feel proud of all of these reasons, because I don’t have a choice but to live with myself, diseases and all. I don’t have a choice but to wake up, put on my shoes and go to work no matter how heavy my legs feel, how blurry my vision is, or how numb my torso is. I don’t have a choice but to attend brunches and dinners with friends and family, or to play a game with my kids, or to watch a few minutes of a show with my husband, even though he likes staying up late and I much prefer Netflix in bed at 9 (who am I kidding, I prefer bedtime at 8). I don’t feel I have a choice in going for a walk, or running to the store, even when I am so nauseas even the slightest movement is treacherous. I have never seen MS as a choice. I have never seen my own body as something to be proud of.

For me, I did not have the luxury of choosing which chronic illness(es) I have, or choosing which medication would make life more manageable for me. I did not have a choice in how this disease took away my eye sight or my confidence in living my daily life. So again, for me, I did not have a choice in continuing to do the things that allow me some sense of sanity and some semblance of normalcy. I don’t have a choice but to go to work when I am dizzy, because I don’t want to depend on another person solely to support me, to house me, and to feed me (though I would not argue someone making all of my meals). I don’t have a choice to turn down social events, because without them I would feel isolated, sad and lost. I don’t have a choice but to stay up late on occasion for my kids or my husband because they did not ask for me to be sick; I can risk a slow moving day following a night of stomping like a dinosaur, or hearing about Magic the Gathering. I don’t have a choice but to attend yoga, or to ride a bike, or to walk when it’s nice out, because if I don’t I fear I won’t be able to do those things again.

So, when the kind, caring, supportive people in my life tell me I should be proud, I smile and I am grateful. I smile and know I should be proud, but that if I get caught up in that pride, I slip. I get complacent and I allow myself to wallow in self-pity, dread and loneliness.

Yes, I can and will acknowledge the hard work that comes with life, and on top of that the hard work that comes with life with chronic illness. But, I will not be proud of living with MS. I will be proud of who I am despite MS.

Take the wins when you can

Yesterday I said to my sister in law something about taking the wins where you can.

And so I will. I’ll take the MS wins because while there are awful, awful, horrible and scary things about this disease, I can find the wins.

Recently, I had the most notable flare up I have had in ten years. I needed steroids, I needed support. I lost vision to an extent and I had a hard time walking. Awful, awful, horrible and scary. Yes.

But there, in those weeks I was reminded of why I created the structure and the routine (as much as possible) for how I live my life. The way I eat, the attempts at movement, the protection of my sleep needs and my goal of peace; and everything that comes along with all of that. All of those things help me stay flare up free. My routine helps me to see, literally, to see the world in front of me, and to see my son’s tiny face.

So, with this reminder I tried to slow down, I took inventory and saw where I was failing myself. Granted, the last four months in my life have been insanity and chaos, most of which was out of my control; but, I did not listen to my body, did not slow down, and did not hold a care for my own wellbeing, unintentionally. So, I hit reset.

Resetting is hard when freezer meals, chaos and anger feel so much easier, so much more accessible. However, resetting is so necessary for my sanity, for my physical health and for my family’s wellbeing as well.

With this reset I was dreading my follow up with the opthaneurologist. I did not want another appointment reminding me I have an awful, awful, horrible, scary disease. I did not want to interfere with my schedule, I did not want to drive there and I certainly did not want to wait for ever to be seen, let alone have multiple exhausting tests. But I did. I did it.

And I’m glad I did.

My vision returned to my baseline (a blind spot covering 25% of the vision in my right eye). My color vision is not where it was, but I will take that any day if it means I can see again.

What a win.

To learn and to see (heh) that I, that my body, was able to heal itself because I paused, listened and reset. I also took disgusting meds and did what the doctor said despite really, really struggling to do so.

What a win.

To drive home in tears, because I got good news instead of pulling over sobbing because my body is failing.

What a win.

To go home, to look at my one year old and to see his face. To see all of his face in one glance.

What a win.

To walk up the stairs without wincing, to get on the bike without holding my legs, to get out of my chair without having to think twice.

All wins.

With this awful, awful, horrible, scary disease I am going to take every single win and hold on to them for dear life.

Because it is my dear life.

Oops, my body did it again.

It failed me.

It failed me big time.

I lost another unborn babe. If you’re able to keep up that makes three now. Not consecutively, but THREE nonetheless.

This time feels different. It feels different because I had zero bleeding, everything appeared fine, we even had two promising ultrasounds. And then I faintly heard “no cardiac activity” as I stared at the black and white image of a tiny, tiny lifeless baby inside me. Still inside of me. Still.

My husband explained it as a gut punch, I describe it as a soul punch; the icing on top of the worst flavored cake I’ve ever eaten.

I’m sad, we’re sad. We’re heartbroken, but now have to carry on with our little 9 month munchkin who has zero idea of the hurt we’re feeling. Zero idea of what he is missing. We will try to give him a sibling, we will try to create the busy, full home we so badly desire, but he-we-will never get to know this little one.

This one that was a baby, not a tumor. This one that was our happy surprise, our early goal.

We shared our news, good and bad, with many close and we’ve grieved with those we love. I say this to say-I want to talk about it. It needs talking about.

This is not a stigma, this is not taboo, this is real life, real loss.

This is vulnerability by definition and this is heartbreak through and through.

Today I said goodbye to that little life and I felt it slip away, alone, in a cold and bright room. But, because of our sharing and our openness I came home surrounded by the most love I’ve felt in a long time. The most love from blood family and from chosen family.

In the midst of chaos (that seems to never end) and in the midst of again, some of the darkest days, I am reminded of the special world Mike and I have nourished, and the amazing humans we are so honored to have surround us.

Words are not enough for the grief AND gratitude that absolutely fills my home, and my heart.

Another Day, Another Doctor. These Are The Things I Think About While Waiting. Again.

I’ve tried to write a post for a while now. One about a flare up as a mom. One about appointments as a mom. One about existence as a mom. One about…anything as a mom. And I haven’t been able to. As a mom, I’ve been too tired.

But, now as I sit in yet another waiting room I have the time and the emotion regulation enough to do so. (Especially since I’ve been in this waiting room for hours before). This is the waiting room of the neuro-ophthalmologist.

Anyway…

Before having a kid I lived in the mindset of ‘I will take each ms, and health, challenge as it comes.’ And then I hit a wall; in august my vision went wonky. And I say wonky because I have no other way to describe it. It took time for my eyes to adjust to light and dark, I thought I was having some blind spots that were new, I was having trouble focusing, etc, but no one thing to pin point when doctors asked me to explain what was happening. Because I couldn’t be seen by a specialist, I got an emergent MRI and received a three day dose of IV steroids.

Fast forward to now, 3.5 months later and I am finally being seen, well waiting to be seen. Waiting to learn the extent, if any, of the new damage to my eyes. I am, at minimum, having a typical eye exam, and a color vision exam, followed by a field of vision test and a scan of my optic nerves. All testing that I have not done since I originally lost my vision in 2008.

My mind immediately goes back to that fear of the unknown; the fear of not yet being diagnosed and having zero idea of what my future would even hold.

This time I am fearful but, for so many other reasons.

For fifteen years I have remained fairly stable in my disease progression and have always said, I can handle losing most abilities, but should I lose my sight I would not manage that well. And while I can still see, the fear of one day not being able to see my children clearly is crippling. And while I often write of the positive moments, and lessons learned from my MS, when it comes to this I have no wisdom, no insights and no cliche motivational quotes to preach.

I have only this…

It sucks. Even when it’s good, it sucks. Even when I’m hopeful and inspired and at my optimum performance, it sucks.

It sucks living with an unpredictable, often debilitating disease. It sucks raising a child when having this disease. It sucks navigating an able bodied world in a body that could very well become disabled at any moment.

The fear never, ever leaves. The constant reminders of how quickly anything could change are always present.

Today, in a presentation someone asked what filled my cup, and I wrote down my son; but, that answer means so much more to me. The full answer is-seeing my son, watching him smile and laugh and truly seeing the world through his eyes.

I hope I can always see his world.

Chronic Fears and New Memories

Having a chronic illness as a mama is a new kind of concern.

Each sleepless night brings about a fear of what will happen next. What symptom will pop up? What new flare will ensue? What struggle will I face today?

On the 80th trip up and down the stairs( or the 900th bounce and the one millionth time picking him up out of the jumper) I think to myself – how will this exertion impact my already achy legs or my numb upper back.

Oh and then to have to also parent. And parent well; because my son did not sign up for this. He did not willingly put himself on the path of challenge because his mama has some medical stuff.

So far, I have noticed the phenomenon that in the exact moment I see his smile or hold his little body, my own body snaps into gear and can handle anything. Then, once he is safe in bed for the night my own body loses control and crashes. Every symptom I’ve been fighting and every thought I’ve been hiding comes to the forefront.

And so does the fear.

I worry that the five hours of sleep I get a night are nowhere near enough to heal and mend these things. Those limited, often restless moments are minimal compared to what is needed for chronic illness.

And that fear that my symptoms won’t heal, or won’t quiet down never turns off.

Leading to a vicious, vicious cycle. One consisting solely on the reposition of lack of sleep, stress, chaos.

So, how do I wrap this thought up in a pretty bow and end it? I don’t think I can. I don’t think there’s a resolution to the pervasive fears of motherhood. There are distractions, and moment to moment coping. I am learning that to chronically mother is to chronically accept.

While motherhood with chronic illness brings new concerns, new stressors and new fear-it also brings new levels of acceptance, presence and hope.

While I live in the drama and insanity of illness, I actively work towards and choose (as often as possible) to also live in the beauty and motivation of each new moment; smile from this sweet boy, and each new learned skill in the hopes to hang on to those memories forever, even when the fear feels all encompassing and the sleepless nights are truly never ending.

I Don’t Want My Body Back As A Mother

In talking with mamas, many, if not all, have said how glad they were to get their bodies back. Whether it be following delivery, after breast feeding or when they finally slept again.

Whatever the case may be, it has been the same sentiment about wanting to feel themselves again, or wanting control in some aspect of their bodily autonomy. Or, even wanting to exist in what feels familiar.

Honestly, that is not the case for me at all. While I am beginning to feel myself again; my pregnant and healing body was the most in control and predictable I’ve felt since I was sixteen years old. The moment I started to feel the chaos and discomfort of pregnancy was a moment I felt relief. Not just the emotional relief of finally reaching a goal, but a physical relief that feels hard to comprehend myself, let alone to put words to.

In my day to day, at baseline, I am uncomfortable and unwell.

While pregnant, I also felt uncomfortable and unwell, but with purpose. Those nine months, and the four (so far) following, were a time of the most medically appropriate and cooperative my body has been. Each symptom had a reason and every hard day was moving towards a desirable outcome. And though this sentence, and sentiment as a whole feels very scientific, I can attest to it being the most emotionally freeing experience I have had in a long time.

Do not get me wrong my pregnancy did not come without stress, anxiety and a lot of depressive moments (my husband can back me up here). However, all of those things, including sleepless nights, pain, nausea, anemia, etc. felt manageable with an end in sight. Even healing from a major invasive surgery felt so minimal compared to my indefinite MS filled day to day. The key word being indefinite.

How else can I describe this?

I don’t want my body back. I don’t want to return to my constant fight, my constant tug-o-war between health and disease. A true variation and reminder of my own of dis-ease.

But I’ll do it, I will always do it. And now even more so. Now, I will always show up. I will drag myself across the hall at 2 am knowing I won’t be able to fall back asleep. I will trek the stairs for the 700th time knowing this one might hurt. And I will eat my 6th peppermint in two hours knowing it will only subside the nausea while I rock back and forth and up and down for another half hour. I will always do it for that smile.

I will always do it because that is who I am. I can be isolated, bored and angry and not feel well. Or, I can live through some of my goals and things I enjoy while not feeling well.

All that being said…

No, I absolutely do not want my body back. Yes, I am curious what this body will do now as a mother.

MS and Motherhood, Three Months In

I live with multiple sclerosis, I live with daily fatigue, pain, some numbness/tingling and pretty regular nausea.

When I was pregnant my symptoms never went away, they just changed. They felt more manageable. They felt more productive in that I knew there was a “reward” at the end; I would finally have my baby.

It’s often the case that symptoms quiet down during pregnancy and potentially while breast feeding, and that there is risk of relapse, or flare up, once the baby arrives. I wouldn’t say my MS was “quiet” in pregnancy, just different. In fact, I think I had a flare up but it was so minimal I did not do anything to treat it, and it went away days after receiving my new medication. (This flare up consisted of my right pointer finger going numb-relatively minor in the scheme of things.)

Anyway…what I am getting at is the fear and the realization of returning to baseline, this time as a mom (which is weird to say because I don’t quite feel like a mom yet-whatever that’s supposed to feel like). My son is now three months old and as a family we’re settling into to an expected lack of routine and the chaos of infancy. Now, keep in mind myself and my disease thrive on routine, rest and the illusion of self-care so it has been pretty challenging existing with no plan or structure each day, hour and minute. However, I notice that as time goes on I feel somewhat human, and somewhat sane depending on the moment. I also notice, that as time goes on, my daily symptoms are returning.

Fatigue? Oh, it must be exhaustion from no sleep. Nausea? Well, you’re not eating right for breast feeding, or you’re probably dehydrated. Pain? You’re carrying around a 13 pound human all day.

These are all of the things I’ve told myself up until recently when I sat down and fully allowed myself to remember who I am and how poorly my body operates at its baseline.

Fatigue? This is different than dragging, fully exacerbated by no sleep. Nausea? No matter what I eat, breast feeding or not, I will likely feel sick despite having to eliminate my trigger foods. Pain? Carrying a 13 pound and growing human increases the pre-existing nerve pain I already have.

So, while I try to rationalize and pretend all my symptoms away, I really can’t. As a mother with chronic illness, I really cannot deny the challenges it brings, or the fear for the future that exists simultaneously.

I spent years and years existing in my body and existing in my disease(s). Now, I have chosen to start that journey all over again and I am only three months in. So as I mentioned earlier, the things that helped for years are not attainable at this time…at least not with consistent regularity. What is routine and structure? What is self-care?

Nowadays routine is some complicated equation leading me to determined the most efficient ways to complete tasks while baby sleeps. And structure is catching a yawn in just the right time to capitalize on nap time, or listen closely for the initial “wah” indicating hunger is on the horizon. And self-care? Maybe dinner that wasn’t prepped in the microwave, or a fancy coffee when I’m back and forth between appointments.

But really, those lattes are top notch self-care nowadays.

I am working to readjust my mindset and my self talk when it comes to MS and fears and anxieties and I’m working hard to allow myself to feel and live in the shit knowing that likely the next morning, or the next hour, will feel completely different. And knowing my son doesn’t know or recognize when I’m struggling because he is truly in each moment. And each moment with him -present and attentive and smiley and wiggly- helps me forget for that time and helps me to truly capitalize on his joy and his growth and be fully available regardless of my disease.