Kiran and I were able to cross two things off our summer bucket list on Friday night: We went to Kiran’s first ever Iowa Cubs baseball game, and we saw fireworks together after the game.

A lot was learned.  First of all, next time, we will make sure we arrive two plus hours before the start of the game.  It was a bit hectic finding parking, no accessible spots (or any spots) were close by the time we got down there, and we ended up trekking a bit with the wheelchair.  Thankfully, it’s doable, and we made it.

Couple other big takeaways: We will never sit in accessible seating in Section U again.  I actually wish the ticketing agent would have been more helpful when I called to purchase the tickets – it would have been helpful to know this is right by the dugout so kids would literally be swarming our seats at the end of each inning, trying to get players to throw them the game balls … Not super fun to have to be vigilant and make sure these ball-hungry kids treated the wheelchair and Kiran’s space with respect – and most of the game I was watching for foul balls flying, so I didn’t really appreciate the encouragement to have balls thrown in our direction either!

For the most part, it was a minor inconvenience, but it really started to wear on us around the seventh inning.

And finally, after checking two different women’s restrooms and resorting to changing Kiran on his changing mat on the gross bathroom floor, I saw the sign that stated diaper changing areas are at first aid, located behind home base.  Important info, for next time.

It was actually, truth be told, a fairly stressful outing for this mama, especially on a Friday night after a long week.  But man, when I saw his excited face once the fireworks display began, it was all worth it.  His dad always gets to spend fourth of July with Kiran, so I try to make a point to see fireworks with him another day.  I had all but given up on making this happen – and had kinda given up on an Iowa Cubs game this summer too – but I am glad we went.

It matters, which is why we do it.  Even when it’s stressful and it doesn’t go as planned and you have unforeseen frustrations and knowledge acquired too late.

But next year, when we take Kiran to another game, we know the drill.  So thankful to be able to give him these great experiences.

 

I have been in denial about the upcoming preschool year.  In denial, telling myself I wouldn’t be worried or stressed at all, because Kiran would be in the same classroom with the same teacher and some of the same associates, and I know it’s a great environment for him.  He is well loved, there, and they know him.  They know how to feed him via g-tube, they know how to read his body cues, and they know what an absolute joy and asset he is to their learning environment.

But.

The families are new.  The kids, new.  So while some of my fears and concerns are absolutely gone from last year’s school year, I still have plenty.

I would imagine (Kiran is my only, so I can only assume here) ALL parents hope similar things for their kids as the school year starts: They hope they learn and grow academically, yes.  I would assume they also hope they will be kind and make friends and feel like they belong in this world.

And that’s the part that’s harder.  Because I have those same hopes for a special little boy that this world is not made for.  Inclusion and celebrating diversity are becoming more of a “thing” in popular culture lately, as you see kids with varying abilities in inspiring commercials and as models – and as big stores are now carrying clothes and other products catered to a diverse group of kids.  And I love it.  I do.  It’s inspiring and people tear up and it’s oh so feel-good….

But it really isn’t translating to much of the real world, just yet.  The social bubble people put around us is real – it’s not just us; I’ve checked with other special needs families.  When people are uncomfortable or they don’t know what to say, they simply pretend we aren’t there.

I’m doing my best to break the bubble.  Fair or not, I know it falls on me.  I’m about the worst person it could fall on, too, because I am about as introverted and socially awkward as they come.  It takes a lot for me to walk up to a stranger and start a conversation, and small talk is excruciating for me.  But I know it starts with me.

And I know preschool is a great place to hone these skills, because it only gets harder from here.  As the gap of what Kiran can do and what his peers can do gets wider as he grows (I am not being pessimistic here – I know Kiran will continue to make progress, but I also have to be realistic that this gap will grow as time goes on), it will be harder and harder for him to make friends.  As much as I hate that, because I know he brings so much to the table.  It shouldn’t – but it will – take special kids who choose to befriend him and understand him and who will see his joy and spirit.

I can work myself into a panic with this.  I really can.  It was my biggest worry going into the school year last year, too, but Kiran was very well liked in the classroom.  Peers loved playing with him, and he made a long-lasting special, true friend.  I know it’s in the cards this year, too.  But it’s hard, starting out.

And ultimately, I know Kiran will never have a shortage of people who love him.  It may not be the peer friendships I long for him to have, but the love will be there.

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Oh, buddy.  Back to school night last night made me realize I am really not ready for this again.  My mama heart longs to protect you and shield you from the hurt … and yet, at this point, I carry it all for you.  So maybe I’m trying to protect my heart.  I knew what I was getting into, with this, when I chose to be a mom.  My heart is going to break – over and over and over and over again – but it is all worth it.  Being your mom.  Man, I am lucky.  I promise to keep pushing against the bubble, even when it’s really hard.  I pray you know how much you are loved as you go into this new year.  You’ve got this, Kiran.

Kiran and I attended a book launch party this weekend.  An Iowa author, pretty well known in the special needs community, as her books are geared toward our families, co-authored a book with Dr. Gary Chapman: Sharing Love Abundantly in Special Needs Families: The 5 Love Languages for Parents Raising Children with Disabilities.

I haven’t read the book yet.  I tear up, still, thinking about the awareness this book could bring to the need to come alongside our families and love us, especially within the church community.

But something the author, Jolene Philo, shared struck fear straight into my mama heart.  She shared about a couple who are still caregivers for their son, who is now in his mid-30’s but has an intellectual capacity of about a five year old.  One way this couple loves him well is they allow him to still get in bed with them in the mornings to snuggle, because, as a five year old, developmentally, this is what he needs to feel loved and safe within his family.

My initial reaction was basically losing my breath for a minute.  That image, of my own son, grown, needing to snuggle with his mama – it’s just not a typical image most people have to imagine.

And I try not to think too far into our future.  I have to hope that I will continue to grow as Kiran’s mama – as I have so far these past four years.  I have to trust this journey, day by day, with Kiran, will continue to prepare me to be the mom he needs as he grows.

It may take me a minute, but I *know* I can love Kiran that well.  And I know that, should that time come, I will continue to love Kiran well.  However he needs me to love him, I will be there.

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

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.

 

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.

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.

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.