I was asked yesterday how I was doing.  You know, the way someone genuinely asks and wants to know and makes you answer somewhat thoughtfully instead of just saying “I’m fine”.  Because of the morning I have had inside my brain and anxiety, here is my for real no-sugar-coating answer:

I am overwhelmed and exhausted.  In other ways, I am making serious head-progress as it relates to accepting the reality of my life with Kiran.  At the same time, I want to cry and scream and crawl under the covers and refuse to come out.  Also, I am determined, now more than ever, to figure out how to make the world a safely accessible place for Kiran.  But, that leaves me often overwhelmed and exhausted.

I want insurance companies to think more holistically and stop being lured in by the present dollar.  I found out this morning from our medical supply company that apparently, our insurance doesn’t cover Nourish (This is a real food enteral (tube-feeding) formula that we have used as a back-up for travel and now during Kiran’s school day).  Apparently, we shouldn’t have even gotten our last shipment of it – and we certainly can’t count on any more.  They will cover the sugar-laden enteral feeding formulas that no dietician would ever declare it was fine for an oral-eating kid to live off of, but they won’t cover real food that would actually make the child healthier long-term.  It’s frustrating.  If we choose to continue to use this as our school and travel food, right now, it would cost us an extra $100 a month out of pocket.  We will probably just do the harder thing and pack blended food instead once our current supply runs dry.

At least once a week, I find myself wishing I could just put Kiran in the car and go somewhere.  Anywhere.  The grocery store, a friend’s house… without packing a million things.  It is the cycle of forever grief, living with the reality of Kiran’s limitations.  Not only do I still have to pack diapers and wipes, but I also have to pack feeding supplies – syringes and tubes and blended food – and then there is the wheelchair.  And there is the constant thinking and plotting of how.  How will I navigate this space – is it accessible?  Is there a ramp?  How many stairs?  Will there be enough room?  Am I going to look like a complete idiot trying to maneuver him in his wheelchair?  I’m not a complete newbie anymore – but this is still going to be my first winter, and the ice and snow are going to bring added challenges and worries to what is already taking up a lot of space in my brain.  Constantly.

But I refuse to hide out at home with him.  Kiran deserves a life.  He deserves to be out in the world, experiencing things, being with people, like any kid.  So even though I have a million extra steps and considerations, I keep plugging along.  Exhausted and overwhelmed – let it be damned.  Kiran deserves a life, and I am determined to give him the best one possible.  He will not be subject to his mama’s limitations too.

I live on this rollercoaster of determination and fear, joy and grief, confidence and utter judgement of myself – how am I doing?  Well.  I’m still out of bed, and I’m still fighting to live my best life and give Kiran his best life.  But I wouldn’t say I’m fine.

As passionate as I am about supporting Help-A-Heart and raising awareness about congenital heart defects, I find myself rarely thinking about Kiran’s heart.  He has been that stable since heart surgery in September 2016.  We are so lucky for that.

And – I have to admit – I am overwhelmed thinking about all of the other diagnoses and daily cares he has going on.  Right now, he seems to be getting in all four molars, so that has been a big focus.  Did you know poops become more acidic when you are teething?  Yeah, raw sore bum is another focus.  And of course, our normal focuses of eating and mobility and gaining cognitive skills and figuring out how to communicate.

I don’t think about his heart.

This morning, I am.  We have a dentist appointment at 8 am.  Kiran will always have to take amoxicillin prior to any dental appointment – cleaning or work being done, doesn’t matter – because he is at increased risk to develop an infection that would affect his heart.  Because of his heart defects.

Forever.  This is why people talk about there being no cure for congenital heart defects.  Not only will Kiran have to have other procedures done in his life for valve replacements, but he will also have to have lifelong monitoring and extra precautions like amoxicillin before the dentist.

Not a huge deal.  So I put 10 ml of medicine through his g-tube a half hour before the dentist.  But, in our life, it’s another thing to remember.  Another extra step.  He will always need this extra step.

And this morning, I remember his heart.  And mostly, I am just thankful amoxicillin is our biggest concern regarding it right now.

I long for an easier life.  I want the freedom to stand in the shadows, to be the wallflower.  I don’t want people to know my name – to know my son’s name – I just want to happily interweave and exist in the world.

That’s one side of me.  It’s the side I have existed inside my entire life, up until becoming Kiran’s mom.

But now?

Because it matters, I want the biggest platform possible to educate and advocate.  If only I could get on Ellen, maybe things would change….

I will continue to write emails and request meetings and start conversations and use this blog and my facebook page as a small but effective platform.  I will continue to make waves and fight for safety and accessibility and just the right for my son to exist in this world.

But it takes it out of me.  I sit here now, completely depleted and holding back tears.

Kiran has made me grow so much, and it has been a challenge every step of the way.  The growing pains are real, guys.  I live so far outside my comfort zone most days, I almost can’t believe I am really doing it.

Even with his preschool teacher and the school nurse – my goodness – oh to be the parent who you meet and then just exchange pleasantries with at pickup and dropoff, who doesn’t ask for anything more or require anything greater from you?

I WANT TO BE THAT PARENT.

Instead, not a single week has gone by without at least one (and often more than one) email being sent to one or both of those people.  I have to.  Kiran doesn’t have his own voice right now; I have to be his voice.  None of it is confrontational – informational, really – but I just wish I didn’t have to.

By the way, today, I had to send one of those emails to his preschool teacher.  Just to let her know he appears to be getting all four molars in at the moment, and because of the increased hand-in-mouth activity, his hands are starting to get chapped so we are trying to deter him from putting his hands in there.  And she responded right away and it was so nice – she just said they’d get some things together to help substitute for his hands – that I really did almost cry.

They are fantastic.  But, I still wish I didn’t have to be that parent.

I *know* I am annoying.  I *know* I communicate a LOT.  I *know* people get tired of hearing some of the same things over and over and over again from me.  I also know I am always respectful and seek to communicate in the calmest, most effective manner possible.  I know that a lot of people don’t know the things I now know, and I know that they matter.

In other words, I know I am going to continue to be that parent.  Every day.  All day long.

For him.

I am going to share the facebook status I just posted on here as well, because I really think everyone needs to be aware and start thinking about this issue.  Safety trumps convenience.  Always, always, always.

Another quick vent. Today, at preschool drop-off, a woman used the dashed lines in between accessible parking spaces as a turn-around to avoid going to the end of the parking lot like everyone else. Had I been getting Kiran out of the car at that time – and had she not been paying attention because she is apparently oh-so-busy-and-important, she would have hit us.

It has been an ongoing issue, and it has been one we have addressed with the principal of the school. He is aware of it, and I am hoping he will, as promised, send my brief plea out to the parents sometime this week. It reads as follows (think about this, anytime you are tempted to use an accessible spot, even “for a minute” or as a turnaround):

Lately, I seem to be struggling with cohesion.  I feel like I have two lives – two selves – the one when Kiran is with me, and the one when Kiran is not with me.  I am a certain person – Kiran’s Mom – during the times Kiran is with me at home.  And I still struggle to figure out who I am during the times he is not.

I have done a good job of avoidance during the times he is not with me.  I don’t spend a lot of time at home, for instance.  I go out with friends, I busy myself with errands or blending food, I have catering events, I lose myself in a tv show or a book….

What I don’t do a good job of is sitting in the space-with-the-Kiran-sized-hole and figuring out who this Holly is.

The changes in our family structure have largely been for the best.  But this is the part I struggle with the most.  This was not the family I dreamed I would one day have – a failed marriage, sharing time with our son apart – but it is the one that became necessary for my well-being.  And therefore, his.  I know the two go hand-in-hand.

So here we are.  This is the life we have been living for the past year and four months.  Things have largely settled into a rhythm and rapport that works for us – that, most importantly, seems to be working well for Kiran.  I am thankful we are through what should be the most difficult, ugliest part.

But I still can’t figure out how to be a cohesive Holly in this life.  And that is really starting to bother me.

 

I leave tomorrow night for the first leg of a road trip to Nashville for a long weekend.  I am traveling down for my boyfriend’s daugher’s 21st birthday celebration.  I believe there will be ten of us – only 4 “adults” (though technically all 18 and over).  It should be a really good time with good food, good drink, and good conversation.

I have been away for weekends before, but I have never been this far from Kiran for this long.  I am feeling equal parts excitement and anxiety.  Guilt and the absolute knowledge the break will be good for me.

I will be away from ALL responsibilities for more than 96 hours.  No childcare responsibilities, no household management responsibilities, no filing medical paperwork, no looking at bills, no running errands, no laundry, no dishes….No responsibilities.

The last couple days have been busy, preparing for this.  I questioned multiple times if this vacation would really be worth the stress of preparing for it.  I know it will be.

I find myself in a very weird position with all of this.  With how my entire life is outlined.  I talk a lot about being overwhelmed and exhausted – and I am – but I also get built in breaks when Kiran spends time at his dad’s house.  It makes me feel guilty – and wrong – because so many people in similar caregiving situations do not have these breaks.

Even this trip.  I almost feel like I am doing something wrong.  That as a mother, as a caregiver, I shouldn’t leave my child behind to go do this.  Nevermind that he will be having a fabulous time spending a long weekend with his dad, and that I absolutely find that beneficial and valuable for all three of us.  I just can’t shake the part of me that feels I am somehow shirking my responsibilities or doing something wrong by taking this trip.

I went back and forth for months.  There was a point, right before I ultimately decided I would go, that I decided I couldn’t possibly.  I have never felt strongly about my decision to go – I just needed to make a decision because the others going needed a commitment.

All of this goes along with everything that has been challenging me lately.  Everything I am learning about taking a break and finding ways to relieve stress – the letting go of the exclusive caregiving role.

I’m still not convinced I made the right decision in going.  I’m also not convinced I made the wrong decision.  I made the decision, and here I sit, feeling equal parts guilt and determination, equal parts anxiety and excitement …

And there is a part of me, deep down, that truly feels this vacation will refresh and rejuvenate, and help me be a better mom as we go into this holiday season.

Or that’s what I tell myself to assuage the guilt.

Kiran is so social.  He didn’t get this from me.  He loves being around people, and I am pretty sure his love language is Quality Time.  Nothing motivates him more than people.  He loves to sing and watch and laugh and chat and cheer and play pattern games and just be held.  And I love doing these things with him.  And I love watching him have these special relationships with others.

A mom intentionally approached me at preschool pickup today to tell me her daughter loves playing with Kiran and talks about him all the time.  This is the second mom (of a daughter – so the girls love him….) who has told me this.  Kiran is developing friendships.

My heart was so achingly worried about this, and it is happening, just like that, for him.  His charm and pure joy DOES translate to his peer group.  He is well liked.

The school nurse informed us today Kiran is the best dressed kid in PreK.  This made me laugh, almost out loud during the heart meeting tonight when I read it, because Kiran’s dad has said that numerous times to me (especially when he is the one who dresses Kiran for school, but that is beside the point).  It is so fun to have other people just notice and appreciate things about Kiran (like his really healthy g-tube site, which she also mentioned…and how sweet he is, which she has mentioned just short of one billion times since school started).

Kiran got to be with other heart kids and their siblings tonight during the heart meeting.  I have always wanted this for him, and I have never been comfortable trying it.  It is SO hard for me in those types of situations, where the caregivers don’t know Kiran at all.  I want so desperately to control the situation – at least to have a five minute pow-wow on Kiran’s need-to-knows.  But really, he was fed and changed – he just needed to hang out.  It helped that a lovely teen girl, sibling to another heart warrior, stepped in and got him out of his chair, interacted with him, and chatted with him once he was back in his chair.  I stopped myself – after checking in on him twice early on – from checking on him again.  I went an entire hour and ten minutes fighting the urge to check on him – I *might* have made a beeline for him the second the meeting was over – but hey, huge progress was made!

I starred one thing that I got on a handout this weekend at the Inclusive Ministry conference I attended.  It was, quite fittingly, at the workshop I was most excited about attending: Straight Talks and Tips for Coping with Stress.  Here is what I decided I needed to hear and commit to memory:

“Let go of the exclusive caregiving role.”  Yes.  This.  And it doesn’t always mean only after I have trained someone for 100 hours and am convinced I can allow my son to be around them.  Sometimes, it means trusting them.  He’s not fragile.  He loves people.  And – as Jolene Philo very wisely told us during this workshop: It is building a support system FOR THEM.

Let that sink in.

This will never be easy for me.  It may get easier as I flex the muscle and practice leaving Kiran in the care of others, but it will never be easy.  Ever.  But it will always be important, both for Kiran and for me.  And I plan on flexing the muscle.  I am going to start checking out the respite times both my church and my parents’ church offer.  These will be great for giving Kiran socialization to other kids with special needs and will introduce him to all kinds of kids.  And I will keep letting him be with the other heart kids – after all, they are just in the room next door.

 

The feeding rollercoaster continues.  Our local feeding therapist got the speech-language pathologist’s report from Kiran’s swallow study and was able to go through it in more detail with us on Tuesday.  We learned something new about Kiran’s anatomy.  Apparently, his epiglottis isn’t working like it is supposed to, which means it is not super successful in protecting his airway when he swallows.  He also struggles with his tongue lifting properly to get the food to where it needs to be to swallow effectively.

What this means for us right now: We can’t progress him very much further at this time.  She couldn’t really answer for us if this anatomy issue with the epiglottis is something that will get better with practice or if it will always be this way.  It depends a lot on his body and his eventual level of understanding/ability to mimic us with certain exercises to strengthen it.

I actually just emailed her to get some clarification on whether we will EVER be able to progress him much further than where he is.  This also may not be a question she is able to really answer, but I thirst for answers.

I am beginning to really feel as though I need to start seriously coming to terms with the possibility of g-tube-for-life.

We can still feed Kiran purees and crunchy/meltable foods at home as we have been.  We can still practice with nectar thick water.  She wanted us to back off on mashable food trials at home (which we were JUST starting), so she can work more in therapy with them now that she knows more about his risks.

The ups and downs can wear on a person.

Here was my Monday, just the phone calls and forms:

Call to Iowa City Ortho to get them to send a prescription here in town for Kiran’s next size up in Mitchell shoes (the special shoes he wears with his Ponseti brace at night, still, for his rocker bottom foot).

Call to DHS, waited on hold for ten minutes before I spoke with someone, only to be told I would need to speak to someone else and would receive a callback.

Received a callback!  Hurray for quick turnarounds!

Worked on Medicaid review form, wanted to poke my eyeballs out, second-guessed myself a million times, wrote in the margins, crossed something out, and ultimately decided the form was filled out to the best of my ability.

Received phone call from Kiran’s health and disability waiver case manager; she is required to check in and see how things are going, get updates on recent appts, etc. every month (We actually played phone tag a few times before we connected today).

Phone call from American Prosthetics and Orthotics to set up an appointment to get Kiran fitted for his new Mitchell shoes.

I was on the phone five times today.  Five.  Times.  I HATE phone calls.

If you ever wonder what a stay-at-home special needs mom does with “all her time”…. I don’t even have anything nice to say after that 🙂