I have been holding this one close to the chest for about a week now, but, as is always the case eventually, the time has come for me to release the news and my feelings along with it.

Remember in my blog entry two weeks ago, when I so nonchalantly mentioned (when writing about the waiver spot Kiran finally got!) that he might possibly EVENTUALLY need a medical stroller or wheelchair?  Didn’t I sound so…stable around that idea?

That is because, in my mind, it was down the road.  In my mind, I’m not even sure when the time was going to come, but it certainly wasn’t now.  And then, as if my blog somehow released something into the universe, last week….

Kiran’s physical therapist said it is time to start considering ordering a wheelchair for him.

Do you know those moments in life that just sorta knock the wind out of you?  They pierce your heart in a way that can’t really be explained, because you’re feeling so many things at once?  Fear, uncertainty, heartache, shock….

I’ve had a week to wrap my head around it.  We have had positive conversations with both physical therapists now about what a wheelchair will do for Kiran – and yeah, it’s time.  They are right.

I don’t think I know yet how to express my feelings around it.  My feelings are mine to handle, and ultimately, they don’t matter.  We do what is best for Kiran.  Period.  Exclamation point!

That may be all I have to give today.  Still swallowing the pill.

I have more thoughts on this than what I covered on my daily facebook post.  It is a topic that has been nudging the back of my mind since February began.

You see, I really thought this heart journey would be different.

I received Kiran’s heart diagnosis in utero, at 22 weeks, so I had time to prepare myself for what lie ahead.  And, since we moved to Iowa just two weeks later, I was no longer working, so I had even more time.  And then, during the last trimester, I was diagnosed with gestational diabetes, so as I carefully manufactured perfectly carbed meals and took walks around the park several times a day, I had even more time.

Too much time, maybe, to think about what this heart journey might be.

The only preparation I really knew to do was to prepare myself to lose him.  Loss is something I have experience with, so I had at least some understanding as to how I should prepare for that.  As I walked countless laps those last few months of my pregnancy, listening to uplifting music, I convinced myself that – somehow – I would survive losing my son.

I can only imagine how this sounds to those of you who have never been in this position.  Pessimistic.  Perhaps even a bit cruel.  Heartbreaking for sure.  But I had to do something with all of this time, had to create some illusion of control for what might be coming my way.

It’s all I really knew to do.

I had no way to truly prepare for what LIVING with a heart warrior would be like.  I had nothing to compare it to.  And, although I found a wonderful support group with amazing heart families, everyone’s story was SO different.  There was no way of knowing what path we would land on.  So I just prepared for the path I knew, the one I understood at least a bit.

Imagine the joy – and fear – and shock – and burst of love – that I have felt since then.

There really is no preparing for this heart life.  And it changes all the time.  But it’s not really any different than anything else in life.  Nothing prepares you for it.  You just have to keep diving in.

I wish I could go back to that pregnant, expectant, terrified, heartbroken mama, as she walks around the park.  I would say to her: Stop preparing for what you know.  Stop preparing for the worst case.  Prepare for LIFE.  Prepare for a LOVE you can’t even fully fathom right now.

Prepare for life.  And live it every day.

I appreciate the Department of Human Services.  I do.  They do a lot of hard work.  I appreciate the services Kiran has been able to get because of them – medicaid for kids with special needs practically his whole life – and now, the waiver for health and disability.

But man, I’ve had a frustrating week with them!  Also – is it a requirement that you either have to speak in monotone or have a mean-sounding voice to work there?  Genuinely curious.

Nobody explained to me that Kiran would transfer his medicaid from what he has had to the waiver.  So when I got the letter saying he had gotten the spot on the waiver and at the same time, got a letter that said his medicaid would expire February 1st, I was concerned.  I didn’t know how it worked, if coverage would change, if there would be a gap in coverage, if I needed to give his providers new information….

So I called my worker, the number on the waiver form, for answers.  I left her a message last week Monday.  And then Friday.  And then again this morning.  Yesterday, I finally tried the number on the other form, and it didn’t go through.  This morning, I tried again – and got a person!  Of course, they couldn’t help me but sent my info to a worker.  I promptly missed that callback (of course) and called again, only to have the call disconnected.

At this point, I was done.  Frustrated.  Practically in tears.  Worried.  One of those moments where the overwhelm just paralyzes you.

Then I got over it and called again.  Same thing.  Left all my information for them to have a worker call me…and then just sat and stared at my phone until I got the callback….

Finally!  Peace of mind!  There will not be a break in coverage; if the number had changed, I would have gotten a new card; everything should go smoothly!

I still haven’t heard from my waiver worker, nor have I had a call from a case manager to actually set up waiver services.  But at least I know his medical coverage is intact.

 

I don’t write often about the spiritual aspect of my journey with Kiran.  Mostly, I see my coming back to faith as a very fragile thing, and it looks nothing like the faith I grew up having.  But today’s church service hit me really hard, and I found myself (once again) sitting there, tears streaming down my face.

The scripture reading was about Abraham’s faith in being willing to sacrifice his only son, Isaac, to God.  First of all, how I feel hearing that story is very different now that I understand a parent’s love for their child.  I cannot imagine being asked to harm Kiran – so sacrifice him, as a lamb on an altar?  Remember, my faith is a fragile thing.  It is certainly not strong enough to withstand such a request.

But immediately, I am thinking: Wow.  If someone can have the kind of faith that they would sacrifice their only son, in obedience and with trust, can I lay my worries and fears about Kiran down?

And of course, the pastor continued, speaking with such passion and conviction, about God always showing up, always keeping His promises, always working in the stuff of our lives, even if it may not be what we thought it should be.

I think about all the unknowns of Kiran’s life.  I think about my deepest fears: What if he never talks?  Never eats fully by mouth?  Never walks?  What if the MRI reveals something far worse than I have even considered?

And when I think about those things – when I acknowledge those worries – I don’t feel like I could possibly have the strength to be who I need to be for him.  But then I look back at all the hard we have made it through.  And I see the people, the kindnesses, the victories that have come at just the right moments.

And I do.  I see God’s hand in it.  I have felt the prayers, even as I haven’t been able to utter my own.  (I still don’t pray in any conventional way; I have found my prayers come out in song.)  The truth is, I came back to my faith at a low point on this journey.  I needed more than what I had in my life, to carry me through the days.

And I am learning, little by little, to lay my worries down.  To trust.  It has never been something that comes naturally or easily to me.  I like control.  I have great skepticism.  I crave concrete answers.  But this journey we are on?  It forces me to let go.

 

 

 

I have been thinking about this little girl a lot since Kiran and I ran into her at the park yesterday.  She was probably right around his age, though she was running around, asking her mom to help her on the big girl swing, climbing stairs, going down the slide…you know, being two.

First of all, like most social scenarios where a lot of kids are present, it struck me.  I always get emotional when I see kids around Kiran’s age, doing all the things I anticipated my own two year old would be doing.  That piece of grief never completely dissipates, no matter how much I have accepted the reality of our journey.  Also, I always feel like I have to say (mama guilt at its finest) I LOVE KIRAN and wouldn’t change him for anything.  I wouldn’t want any other child.  No way, no how.  But that doesn’t change how it hits me, seeing other kids his age – sometimes, I’m fine; sometimes, I want to cry.

Yesterday was interesting, though.  This little girl was interested in Kiran.  When we were going down the slide, she kept wanting a turn right after – even though it was one of those double slides, and she could have easily gone down the other side.  She kept doing that impatient two year old thing, standing at the top of the slide and yelling “ExCUSE ME!!!” (to which, yes, her mom apologized, and told her to go down the other side)…and when we were practicing standing, she came over and stood, just looking at Kiran.  I tried to get Kiran to wave and say hi to his friend … otherwise, I just let them size each other up.  I could see the little wheels in her head turning.

Kids are really smart.  I honestly feel she knew Kiran was about her age, and she knew that he was different.  She was trying to figure it all out.  In that instance, I realized how clueless I am when it comes to navigating this new part of our journey.  I guess I will learn as I go, because I am sure we will find ourselves in more and more situations like this one.

There will never be an end to my learning and growing, being Kiran’s mama.

Having the background I have – both being educated in child development and having experience working with kids as a nanny for many years – I have always understood that play is a child’s work.  For most children, play is naturally a learning process.  As a nanny, I would often create play situations that would help the child meet the next developmental goals – for instance, repetitive up-down on a see-saw or taking color walks where we look for things of a certain color.

With Kiran, it seems I can never quite let this part of my brain rest.  I noticed it again today when we were at the park.  As I’m pushing him in the swing, I’m thinking – oh, I should push him side to side for awhile to help build his vestibular system (this is that inner ear/balance system – we work on this in PT frequently).  We go down the slide and at the bottom, every time, I have him scoot to the edge and stand up into me from a sitting position.  We practiced standing on the wood chips with his hands pressed up against the rock wall – both to give him practice standing on a different surface and to give him that input in his hands (the same type he would get if he were on hands and knees).  And then we stood on the concrete at part of the play structure that was the right height for standing, just to get some more standing practice in.

I struggle to turn it off.  I have to intentionally focus on turning that part of my brain off so that I can sometimes just enjoy play time with Kiran.

Honestly, I do it best when I’m reading to him or singing to him.  Although, I know both inherently help him with speech….

See what I mean?

I feel like it has been a pretty intense week.  I am processing a lot of things related to Kiran’s care and some of the answers and new paths 2018 may bring for him.  For us.

Kiran was offered and we accepted a spot in the cage starting February 27th.  We debated, along with his physical therapist, about waiting until the fall – in order to give him more time to master standing so we could focus on more movement while in the cage – but ultimately, we wanted to move forward with this session.  We have so many moving parts in our life with the changes in our family, and we knew we could commit to this session.  So we did.  It will be 8 weeks, 3 days a week, for 1 hour a day.  We set some good goals for our time in the cage, and we are very excited to have this opportunity again!

We got our assessment scheduled at the Center for Disabilities and Development for April 27th.  This will be a 4 hour ordeal, with a medical professional, speech pathologist, physical therapist, occupational therapist, social worker, and audiologist.  It is called a “Neurodevelopmental Clinic”.

Neurodevelopmental.  My thoughts keep moving back to the MRI.  I am finally ready for whatever information it may hold for us, and it is very difficult to wait until May.  I had a frank conversation with a friend about it the other night, and Kiran’s feeding therapist asked if we had scheduled it today.  When I questioned why she had asked – if she had any concerns – she quickly assured me she didn’t…but then said it would just be interesting if there were any abnormalities around the feeding parts of the brain…but then again quickly said she was just curious.

I don’t think it was just curiosity.  I get the sense a lot of his medical and therapy providers are starting to wonder if there is more to his story than we know now.  And the more time passes, the more I start to wonder, too.

So.  I’m processing.  I’m processing fears and emotions, possible scenarios….

I think I am far more equipped for whatever it tells us now than I would have been had we done it any sooner.  So even though I sometimes berate myself for not having done a brain MRI as an infant or in the last year….I remember this.  I wasn’t ready then.  I’m ready now.

It’s the waiting until May that may drive me crazy.

Generally speaking, today couldn’t have gone more smoothly. Kiran did really well during his echo, with mama’s songs and daddy’s stories to keep him calm. He was definitely more aware of everything – and a bit more curious and concerned – but he calmed down quickly whenever he got riled up.

Dr. R said everything looks good and stable with his heart. He didn’t see a change in the size of his right ventricle or thickness of the right ventricle wall. No real change with the conduit – still just minor leaking which is to be expected. The plan moving forward will be less invasive monitoring until something changes. He was thinking rather than going back in the cath lab, our next closer look could be an MRI of the heart, which still allows them to measure pressures. All around just really positive news here!

GI Doctor was mostly an update and some questions. She is going to refer us to have a consult with an entire feeding team – GI Doctor, SLP, child psychologist, etc. – to determine where he is with his feeding and if/when a more intensive feeding program would benefit him. She said they are generally done around age 3-4 and when skills are pretty good. We will see what the team says when the time comes – it will likely be at least 3 months out.

Endocrinology was just updating. We didn’t have any concerns, and she wasn’t seeing or hearing anything that would indicate any gland issues. She did draw labs, and it went surprisingly well. It helps to ask for the best – I am certain this is the first time ever they’ve gotten blood from him with ONE poke! He was just a total rockstar. I know I say that every time, but I am just amazed at how cooperative and easygoing he is. Every time. He just amazes me.

Dr. R. is putting a referral in to the Center for Disabilities and Development. We had been followed by a specialized nurse at the hospital, but that ends at age 2. That will be a whole other assessment with regular follow-up appointments, but we are looking at probably a six month wait for them too.

So. Kiran continues to be medically stable, and his biggest concerns continue to just be development and feeding.

I’ll take it.

I had to make four phone calls yesterday, all related to Kiran.  I have been on the phone five times already this morning, six if you count the one phone call not pertaining to Kiran.

Sometimes, phone calls alone could easily make up a pretty solid part-time job.

I hate phone calls.  If I could drive to all of these places and simply talk to someone face-to-face, I would.  Something about talking on the phone has always bothered me.  I have to be in the right mindset to handle it.  There have been many days – especially early on in this journey when this many phone calls was the norm in a given week and not the exception it is now – when I simply couldn’t.  I put phone calls off often.

I’ve grown significantly in this area.  Does that count as a way-my-life-has-changed since having Kiran?  It definitely has.  Phone calls are a necessary part of life for us.

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Kiran has been on a waitlist for a Medicaid Waiver – the Health and Disability Waiver – since his first week of life.  We were told the waitlist exceeded two years.  In December, we were finally able to have the assessment done to determine if he would get a spot that had opened up.  Last week, we found out he was approved for this spot!  This is exciting news!  I am still waiting on a callback to determine the accuracy of all of this, but, in addition to the Medicaid coverage he has already been receiving, this waiver provides a lot of good extras: respite care, special equipment, home and vehicle modifications, etc.  Respite care is a nice benefit right now, and, depending on the trajectory of Kiran’s development, it may be nice to be able to get a medical stroller or wheelchair at some point … he is getting heavy and walking still may be a bit of time away!  Regardless, I am thankful he was given the spot, and we now have access to more benefits for him.  It’s been a long time coming (and boy, respite care would have been EVEN BETTER when he was a newborn!)

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Tomorrow is Kiran’s big appointment day in Iowa City.  We will be leaving at 5 am to arrive in time for an early morning echo.  Then we meet with his cardiologist, gastroenterologist, and endocrinologist.  I woke up with a lot of dread in my heart for tomorrow.  Kiran is definitely a lot more “with it” and a lot more nervous about things medical.  Last week, I had a stomach bug (24 hr. one, thankfully), and I put on a mask and gloves to be able to say goodnight to him….Let’s just say the uncertainty, fear, and tears that happened when he saw his MAMA like that makes me nervous for him tomorrow.  I hope some of the new calming techniques we have learned and utilized from OT will help us get through the day…and some good distracting toys!  I know the endocrinologist wants labs done, so that will likely be the most challenging part of the day.

Specific prayer requests: That we can keep Kiran calm and happy throughout a rough morning of appointments; that they have no trouble getting blood from him and can do it on the first try; that all news received is good news.