In a perfect world, I would have had the time and energy to sit down on Kiran’s birthday (Friday, October 21st) to reflect on all this year has brought us.  Or perhaps I would have penned a poem, describing in flowery language everything he has taught me and all the joy his presence brings to my life.

Instead, I spent that entire day – and the entire weekend that followed – doing exactly what I should have done, tucked inside my imperfect world.  I cherished every moment with him, and we celebrated like we’ve never celebrated before!

On Friday, Arif and I took him to the pumpkin patch.  Though I am thankful we finally did this, as it had been on our to-do list all fall, we realized upon arrival there was nothing much he’d really appreciate there.  And at $10 per person, we opted to just take some cute fall photos and buy some pumpkins.  Still.  Fun outing!

We then welcomed our good friend from Seattle.  Friday afternoon was largely spent baking the birthday cake (Arif’s jurisdiction; he practiced a couple times earlier in the week!) and playing with the birthday boy.  We then had our closest family over for pizza, cupcakes, and ice cream.  Gifts were given.  Cake was tried.  It was a beautiful night.

Saturday was the big party day.  All morning we worked in preparation for Kiran’s lion-themed party.  We had many friends (including kids!) and family come to join us in our rather large celebration of Kiran’s life.  Though fun, this was probably the most exhausting part of the birthday weekend.  We were so thankful, though, for everyone who came to love on Kiran and celebrate his life with us.

Kiran was pretty exhausted from his party too.  He went to bed early Saturday night, and we had a couple friends over for a very lowkey fire in the backyard firepit.  This is easily my favorite thing to do on these crisp fall nights – it’s a wonder I don’t beg Arif to do it every single night!

Sunday was the Superhero Heart Run, which all but two from Team Keen on Kiran walked.  We had such an incredible turnout for our team (and all the others) – it was a lot of fun!  Probably the most emotional part of the entire weekend for me was the Heart Kids Parade right before the run began.  To make it even more momentous in my mind, it was immediately followed by a bubble blowing for the Heart Angels who have passed away.  All I could think, walking next to Arif and behind Kiran in his Captain America shirt, was: I am so lucky to be walking in the parade with my son instead of blowing bubbles to honor his memory.  So lucky.

This weekend could have been so different.  Our story with Kiran could have gone so incredibly differently.  I never lose sight of that.  It is always tucked back behind every challenging thought, every fear, every frustration…I always know, deep in my heart, I would take all of that over the alternative.

So, my sweet darling Kiran, know this: This has been the best and hardest year of my life.  I am so thankful to be your mom.  I cannot imagine my life without you in it.  I am the luckiest woman in the world.  And I love you more than I could ever begin to express in a silly little blog.

You are my sunshine.

Kiran got a wonderful early birthday present at his cardiology appointment yesterday afternoon.  Dr. M. said everything looks great.  He is like a totally different kid.  When I asked if he has any restrictions at this point or if there is anything we should be concerned about, he said we can treat him like a normal, healthy child.  He encouraged us to “Live your life.”

Talk about a perspective shift.

Life is such a precious gift, and Kiran has been blessed with an amazing journey.  Tomorrow, he will be one.  We cherish every day, and our emotions have been running particularly high as we approach his birthday.

We are so thrilled we have come this far with our family still intact.  We couldn’t be more lucky, waking up to his smiles and roars.

But we know this isn’t the end of our journey.  And we know for many families, the journey looks a lot different.  CHD research needs more funding.  We need to continue to move forward and provide awareness and focus on more effective treatments – maybe even someday a cure.

Part of living our life with Kiran is being a voice for congenital heart defects.  We will be celebrating our son’s life, his strength, his resilience, all weekend long.  On Sunday, we will be walking in the Superhero Heart Run, for him.  His lion and his monkey will ride along in the wagon with him, both symbolizing journeys that are close to our hearts right now.

I will make one more plea.  Come join Team Keen On Kiran and walk with us on Sunday.  You can register day of – contact me for the information or look up Superhero Heart Run Des Moines.  Or, if you are able, consider a donation to help further this important work.

Without all of the advocating voices before us, Kiran would have never had the chance to be told to simply “Live your life.”

Just like that, he reminds me why I am on this path. He reminds me of everything I have to be thankful for. He reminds me how much I love. 

He reminds me how lucky I am. How blessed. 

How do we, as humans, hold such conflicting emotions – such deep sorrow and deep joy – inside us all at once?

There is a darkness I fall into sometimes, of my own creation.  It is never that I forget how much I love Kiran – It is never out of a desire that he be different than he is.  And it is never out of malice toward others with healthy children – It is never that I want anyone – ANYONE – to have to experience this whirlwind, though so many I am connected to have been living inside it much longer than me.

But sometimes, I just plain feel sorry for myself.  Sometimes, I just look around at all the healthy children my friends are raising…or I think about all the healthy children I helped raise as a nanny for nine years…and I just think WHY?  Why me?  Why couldn’t I have had a healthy child?  Why couldn’t Kiran have been born with a healthy heart?

I cry in church all the time.  These last four weeks, the sermon series has been on suffering.  I have literally sobbed.  I hate crying in public.  I do.  But so many of my emotions have been so raw, and now that I have been able to live inside the exhale, post-surgery…I have a little more time and space to feel them.

This morning, the pastor was using a story about his almost one year old son using sign language as a means to communicate, to illustrate something within the sermon.  I just so happened to be in the bathroom during the story (there are speakers so I could still hear the message, even while dealing with my overactive bladder).  I am so thankful I was in the bathroom, because that simple story just made me cry.

I taught so many of my nanny kids sign language.  I had the excitement and the feeling of accomplishment when they could sign back to me.  It is yet another developmental goal that Kiran is so far from.  And sometimes, that stuff just hits me.  And I’m sad.  For him.  For me.

I am not different in any significant way from anyone else with a medically fragile or special needs child.  I am fairly certain none of us grew up imagining our family this way.  I dreamed about being a mother my entire life.  I devoted my post-college years to being a professional nanny because I essentially got to live the dream and get paid for it, while waiting for my own personal dream to come to fruition.

It is nothing like I imagined it would be.  And I wonder why this is the path I’ve been placed upon.

I think I am beginning to come to terms with the fact I may continue to grieve for awhile.  It’s a different sort of grief.  It’s the letting go of the life I always dreamed of, the one I always imagined.  And it’s learning to embrace, every single day, the life I have been given.  The life with the strongest, bravest little boy I know.  I wouldn’t trade it, but there are days I’m frustrated with it and deeply sad about it anyway.

Kiran had his echo this morning.  It’s amazing how quickly my brain is transported to a state of panic.  I seem to always go to the worst-case scenario.  As we were waiting for Dr. M to read the results of the echo, I was just clutching Kiran, trying to make my heart stop racing.  It didn’t work until I heard these words:

The echo looked great.  Everything looked as it should.  The echo technician was then able to tell us that she wouldn’t have even been able to tell he was a heart kid by what she saw – that is how wonderful Dr. Hanley is!  It continues to amaze me that he has near-normal function now.  Crazy.

Of course, this doesn’t answer the question of why he is sweating and why his heart rate has been elevated.

We kept our appointment with the pediatrician, just so I could be sure there wasn’t something basic I was missing.  She checked for any signs of infection and just did an overall body check on him.  We chatted about his symptoms.  We chatted about his tummy issues and some feeding changes.  Overall, he looked fantastic.  We are a bit stumped.  Our pediatrician is going to do some reading on it – and I am going to continue to pay even closer attention to when these episodes are happening – and we are going to chat again early next week.

I did reach out to the MAPCAs mamas and papas facebook group yesterday, and one mom said something that made sense to me.  Her son also had the sweating episodes – bad enough that she would sometimes have to change sheets in the middle of the night, even! – and her cardiologist told her his body just needed time to regulate to his new anatomy.  She said the sweating went away right around six weeks post op, which seems to be the magical timeframe for everything.  I am hopeful that may be all that is happening here.

So – no definitive answers.  That seems to often be the case.  But definitely good to know his heart and arteries are looking as they should.

Kiran has been sweating.  Initially, we were pretty sure it was because he was coming off the Ativan (the mild sedative we were working on slowly withdrawing him from because the little turkey had a rough time coming off the morphine and versed he had in the hospital).  But he has now been completely off of that for a week and a half.  He has still been sweating.  Oftentimes, he sweats around a feed – whether or not he is being tube-fed – so whether or not he is actually putting any effort in to eat.  But it also happens at other various times – sometimes when he is worked up, sometimes when he’s just resting.

I have been telling myself it’s not cardiac-related, because I don’t want it to be.  He has had tummy issues since his surgery.  His digestive system still hasn’t regulated itself, and I can tell he is struggling with the acid reflux and some tummy pain at times.  I was trying to make the sweating about that.  And maybe it is.  I can still hold onto that, a little bit.

Because his oxygen saturations, even during his sweating episodes, have been 98-100.  (I love that we have the pulse ox at home to spot check!)  He isn’t having any retractions with his breathing, his coloring isn’t changing….I wasn’t noticing any other cardiac symptoms, so it was easy to push it off as something else.

Until I remembered today I should also be paying attention to his heart rate when I hook him up to the pulse ox.  And his heart rate has been sitting in the 140s-160s.  This is high for a baby his age at rest.

I just talked to Dr. M, our cardiologist, and we have an echo in the morning to see if his heart is working properly.  It’s an important first step.  I am really glad Dr. M took my concerns so seriously and isn’t making ME sweat this all weekend long.  Also, for good measure – because it just makes me feel better – we are also taking him to see the pediatrician tomorrow afternoon, to get his tummy and everything else checked out.

I know it – I’ve said it – I’m now living it : There Is No Cure For CHD!  Our story doesn’t end with his “full repair” surgery.  It continues on.

 

It is like I had been holding my breath.  I had to put all of my physical, mental, and emotional resources into doing so, into keeping Kiran alive and thriving, getting him to his life-altering surgery.  When I have to be strong, I am strong.

I feel like I am living inside the exhale, especially this last week.  My physical body responded by contracting a nasty cold.  My mental and emotional self responded as well.  I have struggled with my well-being more this past week than I have throughout this entire journey.

And with that comes the guilt.  This process, our journey, has been difficult, true, but we have been so incredibly lucky.  We were lucky to bring Kiran home as a newborn.  We were lucky he was able to remain stable until he was 10 1/2 months old.  We were lucky the surgery was such a success and the full repair was possible.  We were lucky he completely rocked his recovery, and we made it home far sooner than any of us anticipated.  We are lucky he is alive and with us.

Bottom line, my brain incessantly chastises me for struggling.  I have everything to be thankful for.  I have every reason to celebrate.  I have every reason to be filled to the brim with joy and excitement for this next chapter in our story.

Instead, more than anything, I want to stay in bed with the covers pulled up to my chin.  I find myself crying as often as I was in the days approaching surgery.  I do my best to push past the grey, but I feel engulfed in it.  I am in a period of darkness.

I am not doing okay, and I don’t know exactly why.