Good Mom

I was told today, emphatically, by one of Kiran’s long-time therapists, that I am a great mom.  I have no idea how she measured this or what observations she made that determined this, but she was sincere.  And very sweet.

I often think to myself, when receiving this compliment, that it certainly doesn’t feel like it.  I hold so much guilt, daily, about not being enough for Kiran.

There’s never enough time.  The balance is off.  I don’t have enough energy.  I have too many household things to tend to.  The list goes on.

I didn’t invent mama guilt, but I have certainly perfected the concept.

I recently read something that talked about special needs parenting just being “more”.  And it is.

Because I am Kiran’s mobility, I can’t take him to the park and just say “Go play!” and sit on the bench to drink a latte.  (This should be the first line of my next poem.)

Because he is still learning to play, I feel guilty every time I just sit him down with a toy in front of him.  Inevitably, a couple minutes pass, and he has either 1) thrown the toy off to the side, out of reach (or at least out of sight, out of mind; object permanence isn’t a strong skill yet), 2) thrown his body back so he is lying down just playing with his hands or staring at the ceiling, 3) taken his glasses off and decided they make a tasty snack or 4) any combination of the above three items.

But tonight, as I brought him downstairs with the intention of reading books before bed, I noticed my forgotten pile of laundry laid out on my bed, waiting to be folded and put away.  I am not 100% in the healthy department this week, and I am feeling very rundown by the time Kiran goes to bed at 7:30 (a little early tonight, since I sat down to type this right after settling him in bed).

So, do you know what I did?  I thought to myself (which I don’t do nearly as often as I should): What would I do if he were a typical almost-4 year old?

Answer: I would say “Mama’s going to do laundry; you go play with your toys until bed.”

Because there is something about being done – as done as a mom ever is – with chores before the little one goes to bed.

So, I said that to him.  And I sat him on the floor where he could see me and we could chat, and I put a couple toys in front of him.

And – this is not always the case, as outlined above – he stayed sitting the entire time and even interacted with his toys more than he normally does before deciding he was done with them.  He grew frustrated with his banter at one point, and I gently reminded him I was doing laundry, and he could play with his toys until bedtime.  He only took his glasses off once, and I did correct that behavior.  But otherwise, he sat and played with his toys, and I did the damn laundry.

Easily half of the stuff I post on facebook lately has to do with inclusion and embracing differences and incorporating kids with special needs into the classroom.  And yet, I struggle with it in my own life.  In our own daily routine.

No, I can’t say “go play” at the park and just watch him from a bench.  I can’t say “go put your pjs on” or “go make yourself a bowl of cereal”.  There is a lot that *has* to be different in our day; a lot of my life is very hands-on care-giving.

But I can do something typical like have him play with his toys before bed, so I can get my laundry finished.  And I don’t have to feel guilty about that.

 

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Heart Health

Kiran is a rockstar. Truly. Appointments starting at 8:30 that lasted until 11:30, and though he expressed his frustration a few times, he really did an outstanding job today!

If I had the energy (lack of sleep and full morning of keeping little one happy during medical poking and prodding will get to a person), I would cry tears of joy.

His heart looks great. Very little – if any – change from last year. His right ventricle wall is still a little thicker than a typical heart’s would be, but it is so much thinner than it used to be, because it doesn’t have to work as hard as it once did.

Regurgitation from valve is mild, not really seeing much change from last year. Pressures still look good and again – no real change from last year.

I was finally able to ask about long term issues we may be facing with Kiran’s anatomy and the repair he has had. And honestly, it’s all good news. If issues were going to arise with the arteries and repair, they likely would have already. The arteries appear to be growing as they should be with Kiran, and everything really looks so good.

We know he has to have one more open heart surgery, for sure, to replace the conduit (which doesn’t grow with him), but that is still, with any luck at all, the only open heart he will need. In the future, once that conduit is placed, it should be big enough to hold the valves he will need as he grows – and valve replacement can usually be done in the cath lab.

He does have some aortic valve issues, but they have always been there and aren’t concerning. Dr. R feels we won’t need to intervene with this valve at all, but that could be a possible issue in the future for him.

He also could develop arrhythmias as he gets older, and that could be another area we would have to monitor and treat. Dr R. says the risk of this is really pretty small, given Kiran’s anatomy and heart function.

Obviously nothing is certain in this life, and Kiran has definitely taught me that tenfold … but man, this was all great news. He will see cardiology again … next August!

Oh – and no definite plans for the cath lab or anything invasive at this time, unless something changes. Next year, we will do what we did today – echo, ekg, exam – and in two years, we will do a cardiac mri to get a more accurate look. But no current plans for any extensive interventions at this time.

Kiran. Is. Heart. Stable.

Building Anxiety

Cardiology appointments have been a reality Kiran’s entire life, and they will be a reality for the rest of his life. As a minimum, he will see his cardiologist with the same frequency we (should) see our primary care providers – once a year.

That “year card”, you might remember, is a big deal in the heart world. It means his heart has shown stability for long enough that we get to go to that minimum.

Today is his appointment. It has been a year since his heart has been looked at. And I woke up and now can’t sleep.

I look forward to today, because I get to spend quality time with him, even if it is at back-to-back appointments (We also meet his new endocrinologist today). But no part of me looks forward to what will be hard.

He has shown a greater increase in his own anxiety during certain medical and therapy appts. He is so much more aware of what is happening and so much more willing to protest – all things I love seeing but it adds challenge and heartbreak to days like today.

And unless we get to hear “Everything looks great; see you next year”, I am not looking forward to any news. I don’t want any news. I don’t think I have it in me to face anything heart-related yet.

Of course, I don’t want to face anything heart-related ever again, but I know it will come at some point.

Our mantra is familiar to him now – I whisper it in his ear frequently enough. It may seem silly to some that I repeat it so often, but I really have found it to be beneficial in keeping my head – and heart – where it needs to be.

It’s a long road ahead, but we journey together.

Anxiety and Overwhelm

I think the best way to describe this morning is this: I am on the struggle bus with my life.  It seems like everything coming in the next week and a half is just hard.  Stressful.  Overwhelming.  Anxiety-inducing.  Emotional.  Hard.

The end is in sight for my first college course in over a decade.  I can see the light at the end of the tunnel, but the tunnel is really short and full of to-dos.  I have a quiz and a discussion prompt to answer, due today, and I haven’t had the capacity to attend to either yet.  I have two large projects that I haven’t been able to start yet, and a cumulative exam to take on Tuesday.  It all has to be done, from a school perspective, by 11:59 pm, Wednesday, August 7th.  From a my life perspective, it has to be done 24 hours before that.

The reason?  I will be in Iowa City the morning of August 7th, at Kiran’s annual cardiology appointment.  Yes.  Annual.  This is the FIRST time we have gone an entire year between check-ups, and my anxiety is already ramping up in preparation for this appointment.  I have no idea what to expect.  There are no indications heart function has worsened, but one never knows.

And in and around all of this, Kiran goes for his vacation week at his dad’s house starting Saturday morning.  Although I will see him at therapies on Tuesday and Thursday next week, and I will see him for his appts in Iowa City on Wednesday, this will be the longest time in Kiran’s life he has been not in my care.  It is very hard for me to not have control over his care for the short periods of time he spends with his dad, so this will be incredibly difficult.  Though school will fill the first part of the week, I have a feeling the second half will be excruciating for me.

In the midst of all of these feelings culminating into a heavy weight pressing on my chest, clouding my brain, and squeezing my heart this morning, I thought it was a great idea to take Kiran to the library to play and get new books.

I waffled back and forth on whether to do his eye patching during our excursion, but ultimately, it was the hour that made the most sense today, since we have therapy this afternoon.  I struggle with guilt both ways with this.  I don’t like the idea of one more thing that makes him so noticeably different – perhaps I am still grieving this new routine – but I also don’t want to feel like we are always stuck at home during this hour every single day.  Ultimately, I know I have to make the best decision for Kiran and get over my weird guilty mama feelings.  So even though it sometimes breaks my heart, I embrace the differences – he doesn’t mind that he’s different.  He just minds that I keep putting that damn patch over his eye!

As we were wheeling up from the car, an older girl – maybe around 8 – and her younger brother were walking on the sidewalk in front of us.  Their mom was walking parallel to them but through the parking lot.  Now, I am used to kids staring at Kiran with curiosity, but she kept looking back at him with…something else.  Disgust?  Disdain?  I was shocked and put off by this, but I reacted in the same way I do when the stares are more innocent: “Good morning!” with a big smile on my face, perhaps said a bit more brightly than usual.  I was ignored; no prompt came from mom to acknowledge my greeting.  Okay.

We were right behind them when we came up to the doors.  The kids went through other doors, and the mom walked through the automatic door without using the automatic function…and let the door shut right in our faces.  At this point, it took every ounce of determination to continue with our library visit as planned and not just go curl up in a ball somewhere to bawl my eyes out.

I am only slightly ashamed to admit I stopped trying at that point.  I let people place the usual social bubble around us, and I just played with Kiran.  I generally attempt interaction and friendship with the other kids playing there, but today, I just couldn’t.  It was enough, today.

Tomorrow’s a new day.

Eye-owa City

Sometimes the little things seem like big things. My mental perspective is working hard right now to shift my heart’s perspective.

Nothing huge to report with Kiran’s vision at this point. His prescription changed a little bit. We are going to do an ERG test at his next appointment, to see if his retinas are working appropriately. (We are currently assuming most of his vision issues are processing issues – brain issues. We want to make sure we aren’t missing any eye functioning issues.).

In addition to seeing the cross-eyed stuff we have been seeing his entire life, this time the docs noticed he is favoring his right eye. His left pupil is slightly smaller than his right pupil.

So. We need to make sure he uses his left eye more and doesn’t start favoring his right eye too much.

So he gets to be a pirate, for one hour every day. We have to put an eye patch over his right eye, while he is awake and we are engaging in something visually stimulating, for one hour every day for the next four months.

Kiran hates it when we even cover his glasses with our hands. We know from his recovery period from his eye surgery in 2017 that he dislikes having an eye patch.

Unfortunately, I am pretty sure he hasn’t grown out of that.

Remember my blog post earlier today, when I said I am already overwhelmed most days and feel I am not enough? This adds one more thing on the daily to our schedule. One more thing I will likely dread but will do anyway.

Because that’s what we do. We keep walking. One step at a time. One foot in front of the other.

Sometimes the road feels longer.

The Reason

I wonder sometimes, if ever so briefly, why we do it all.

Why we travel four hours round trip to see every single specialist Kiran sees, especially when many of them are unable to coordinate. So, days like today, we make the four hour trip for one appointment.

And in less than two weeks, we will make another four hour trip, but this time we will see two specialists. But that’s another blog for another day – my mama heart can’t think about seeing the cardiologist after an entire year. Not today.

I wonder, too, why I have chosen to take on college classes, in the midst of a life I already find overwhelming most days. In the midst of a life I constantly feel like I am already not enough, as Kiran’s mom and primary caregiver.

The wonder is fleeting. All I have to do is look at this baby boy – turning big boy in the flash of an instant – and I have my answer.

Maybe my world shouldn’t revolve so much around him, but it does. I won’t apologize for it.

We drive four hours round trip because we are comfortable and confident with our medical team in Iowa City. Everyone living the medical life feels that way about their hospital of choice or primary care physician of choice. I respect everyone’s opinions on it – it is a highly personal decision, based on many factors.

For us, Iowa City is where Kiran belongs.

So we make the trip. Many, many times a year. We should have an apartment there, we are there so often. And we will keep making the trip.

And I am taking on school, now, because when I finish and achieve my goal years from now, I will be in a position to support us. I don’t mean just financially. I gave a lot of thought to the career I am pursuing, and it is one that supports our family on every level. The schedule will allow me to be present for my son and to continue to be his primary caregiver when he is not in school.

So I read my textbook in the car on the way to our appointment. I study when he naps and sometimes late into the night. I have regular respite care scheduled, so I know there are times I can focus solely on my role as student for chunks of time. And I will keep doing it.

For him.

When I conceived this little boy, my entire life changed. And it is no longer about me. It can’t be. I have never known another way of loving, and I have never loved like I love my son.

So we march on. One day at a time. It’s a long road ahead, but we journey together.

Value

It is the comment we get most often, from everyone: “He is just SUCH a happy guy!”

He is.  Don’t get me wrong.  I even say it, often.  It is one of my favorite things about Kiran: his joy.  His light.  His spark.  He truly is a ray of light, the meaning behind his given name.

But there is a way some people say it.  Not all.  Some.  Like they are grasping at straws, trying to find the “silver lining”, so to speak.  It’s as if what they are thinking is: “Well, AT LEAST he’s happy!”

It’s an apology for the challenges he faces – or maybe that I face.  Like a “Oh, I am so sorry he’s in a wheelchair…but at least he’s happy!”  “I’m so sorry he doesn’t talk…but at least he’s happy!”

Let me tell you something about that.  I don’t need an apology, and Kiran certainly doesn’t.  And – guess what – his value is INHERENT and has nothing to do with his temperament.  EVEN IF he was grouchy, he would have value.  He doesn’t have to be happy to make anyone feel better or more comfortable about who he is as a person.

I love him when he’s not happy just the same as I love him when he is.  His value has nothing to do with his mood or his abilities or his intelligence or anything.  He’s valuable because he is.  He’s a person with value, like any other person.

I’m glad he’s happy, because happiness is contagious – and because he has a tough road – it certainly does make things better.  But that’s true of anyone.

Don’t ever feel bad for commenting on his happiness – he truly is a joy among joys – but please remember he is valued for so much more than that.

 

Day 5: The Final Day of Fever

Kiran didn’t actually have a fever today.  Thank goodness.  However, he was still worn out from having a fever the previous four days, and I had a lot of disinfecting to do, so we laid low at home until his doctor’s follow-up appointment this afternoon.

Here are some things I learned today:

On day five of my child’s illness, when I haven’t gotten out of the house since sometime on day one, I am going to find myself sobbing on the bathroom floor.  Kiran had just had a bath, and it was all finally too much.  All the worry/stress/exhaustion/what-ifs/overwhelm – it had to manifest itself somehow.  Today, it came out in tears, lying on the bathroom floor next to a squeaky clean Kiran.

One of the (likely many) reasons I struggle with being stuck at home, I realized as we were driving to the doctor’s office this afternoon, is I don’t listen to my radio station.  Kiran and I find ourselves in the car a lot.  And in the car, I listen to a Christian radio station that grounds me.  Like I said to Eric tonight, it helps me keep my head above water.  I don’t think to put it on when we are at home, and I need to.  It would help.

A true medical fever is 100.4 and above.  I don’t know how I got this far along in my journey as Kiran’s mom without knowing that.  He crept up just a little bit this afternoon but never even hit 100, so he technically did not have a fever today.  He could go to school with a temp of 100 (Of course, I’d only send him if he was otherwise acting like himself).  The more you know.

We picked a fantastic pediatrician.  We like the other doctor in the same medical office; we like him a lot.  But he is not her.  I was reminded today, with the two appointments so close together and easily comparable, why we have the best pediatrician in the world.  Seriously.

And finally – truly – this one is so simple, but I forget it so often.  Taking a walk outside in the sunshine is some of the best medicine around.  I won’t say it cured my current brain state – which has not been good in the midst of the past few days with illness and botched schedules and managing schoolwork and being pulled in a million directions while not getting enough sleep – but it helped.  A lot.

And now that the dryer just buzzed and the last blanket (mine) is washed of the sick germs, it is time to get some of that sleep.  That’s bound to help too.

 

 

 

 

Premonition Capabilities

I woke up this morning with very high anxiety.  Some mornings are like that for me.  Everything about the day ahead of me seemed like too much, and I wasn’t sure how I was going to get through the day.

And then Kiran threw a wrench in all of it with a fever this morning.

I don’t know if my Mama Bear skills have just gotten that sharpened that my anxiety level can now predict illness, but we are going to go with that explanation for today.

I am not the mom who takes him to the doctor right away, on the first day a fever of 101 appears, if no other symptoms or circumstances exist.  But:

1) We had a doctor appt set up for next week already to make sure we weren’t missing any medical reason for his new extra need for oral input (and the drool that goes with it).

2) His dad is going out of town tomorrow morning.

3) It’s almost the weekend, and we hate ending up in urgent care with doctors who don’t know him.  If we can avoid that, we do.

4) The big one – the always one – He can’t tell us what’s going on.  We don’t know what’s hurting.

It was enough reasons, today, to just go see the doctor.  It wasn’t his regular pediatrician – she is on vacation all week – but we saw the other pediatrician in her clinic.  Though he doesn’t know Kiran as well as Dr. J, he has seen him a handful of times now, and we like and trust him too.

We got what we often get with Kiran: No answers.  I reminded myself the last time we got an answer, the answer was “pneumonia”, so I will take no answer over that….

But still.  It is hard not knowing why.  Still not knowing what hurts, though his throat looked red (His ONLY other symptom discovered).  The assumption is it is something viral, and the fever shouldn’t last longer than Saturday.  If it remains through Monday, he needs to be seen again.  So we changed his Wed. appt with his pediatrician to Monday afternoon.

No concerns with the oral stuff.  No real answers there either.  We have only speculation, like we so often do with Kiran.

I have grown used to it, living inside the unknown, being Kiran’s mom.  I am more comfortable inside the unknown than I ever thought would be possible for me.

And I continue to act on my instincts, even when I question them after the fact.  I debated canceling a playdate this morning, and I debated taking Kiran to therapy this afternoon.  I opted to cancel both, and by the time 12:30 rolled around, his 99.6 temp was up to 101, and he was looking pretty rough.  I remind myself often to listen to my gut, and I am so thankful I can read Kiran as well as I can.

But oh, how I wish that little man could tell me how he’s feeling.  If he’s cold or hot.  If it’s his tummy that’s bothering him or his throat.  If something in his mouth hurts or maybe he has a headache.  It would be so much easier to help him feel better if I knew what was hurting.

So I do what all mamas do: my best.  I snuggle him.  We read.  We watch Daniel Tiger.  He naps more frequently.  We alternate tylenol and ibuprofen.  We see the doctor sometimes; we opt not to whenever possible.  And I love him and care for him with all I am and all I have.

And my anxiety is a little better tonight.  What I have is focused on the little boy who I hope wakes up feeling better.  But I know I’ve got this.

And so does he.  Toughest human I know.

We’ve got this.