I seem to be in deep denial about Kiran’s appointment tomorrow. I keep pushing it out of my mind – and even now, while lying in bed thinking about the week – I seem to glaze over the fact tomorrow will, in fact, be an Iowa City day.

Kiran is getting a cognitive evaluation done tomorrow at the Center for Disabilities and Development.

I have no idea what to expect.

How do you assess cognitive ability for a developmentally delayed not-yet-3-year-old?

I know enough to know the results will hurt this mama heart deeply.  I know it will bring the all-familiar grief cycle back to the beginning again.

I also know, in my heart of hearts, the results don’t matter. They don’t add or subtract from Kiran’s value in any way. Nor do they change who he is and what he brings, not only to my world but to all who know him.

But man, I dread and push off and deny tomorrow is here. I am not looking forward to it.

I seem to be living on the verge of tears lately.  This week, the wheelchair, feeding, constipation, this life … has been overwhelming me.

I am currently sitting in a running car, Kiran chewing on his keys in the backseat, tears streaming down my face, in the library parking lot.

Why?  Because we need to go to Hy-Vee, and while I was lifting his wheelchair into the back, it occurred to me the random bruises on my arm are, indeed, due to the way I lift his chair.  And then I couldn’t stop crying.

This life is bruising me, and it is leaving me tender.

How do you tell someone who is reaching out to you – who wants to be a friend to you – that you have no idea how to even socialize anymore?  That most times, you feel so alone in this life, your throat physically hurts from the need to scream?  How do you help someone who knows nothing of this world understand what it is like on the daily?  Without sounding … like this?

Without making them feel pity for you or making them uncomfortable…. WITH finding common ground somewhere, somehow, when you can’t think of how anything could possibly be the same?

And yet.  A six year old, daughter of a classmate of mine, peppered me with questions about Kiran today.  It has kept me thinking all day.  Because I am in tears, constantly, thinking about whether or not Kiran will have friends when he goes to preschool.  What will that friendship look like?  How can I help him facilitate this important piece of his life?

Here is what I think the 3 and 4 year olds need to know: He has a special heart and a special brain.  He is different.  He gets around in his special chair (look at the cool light up wheels!), and he has different ways of talking to you.  But you know what?  He likes to clap – like you!  He likes to laugh – like you!  He likes music – do you?  And he likes friends, like you.

And that’s the best I can do for him.

Right now, for me?  I want what I can’t have.  I want someone to tell me this wheelchair transport business gets easier.  It will.  But as it does, other aspects of life will be getting harder.  I want someone to tell me Kiran will eventually not need the chair or an alternate way to communicate.  It’s possible.  But none of us can predict it with any certainty.

I want to feel normal.  I don’t lead a normal life.  But Kiran simply sees that that continues – I have never felt normal, so it’s not as if I’m missing something that once was.

I am just struggling.  Today.  This week.

But we will make it to Hy-Vee.

 

Three weeks was more than long enough to have to fold and unfold Kiran’s wheelchair every time we went somewhere.  The Mini Countryman is a small car.  It is also a leased car that has to go back in early October.  The seat to the wheelchair had to sit in the backseat next to Kiran, while the frame fit in the very back.  With all of that, plus Kiran, plus his diaper bag, car toy basket, etc in the car, we had to be very creative to fit things like, you know, groceries in there too!

For those who don’t know, my dad loves researching and looking at vehicles.  He had been doing so for several months, and we had had many conversations about what I would be looking for when the time came.  A couple weeks ago, after looking at a Honda Element in person – and figuring out the wheelchair does fit in the back, fully together and upright – I decided for sure that was the vehicle I wanted.

Interesting life twist.  During my senior year of college, the car I had bought at 15 was no longer proving reliable.  My parents encouraged me to buy a new car.  I LOVED the Honda Element.  A new one was waaaaay out of my price range.  I went with the next best thing: a Scion xB.  I don’t know what it is, but I love a boxy car.  So now, more years later than I want to admit, I have purchased my dream car.

I mean, maybe not exactly.  It’s black.  It’s not a fun color.  And it’s a 2011, so it’s not anywhere near new.  But it is a car I have always loved – AND it is working really well for Kiran and me.  I no longer have to bend down to put him in his carseat.  The back opens up like the back of a pickup, so it makes it easier to lift the wheelchair in and out.  And – from home to car to anywhere accessible and back to home – I DON’T HAVE TO TAKE APART AND FOLD THE WHEELCHAIR ANYMORE!!!

(An Aside: I just realized I never bragged on my dad for this.  We got the wheelchair on a Wednesday.  Two days later, that Friday, my dad took the day off and built a ramp up to the front door, so we could easily get in and out of the house.  Kiran and I are so, so loved, and we appreciate this more than I can say!)

It was a good decision.  I am definitely still getting used to its size (the Mini is tiny in comparison), and gas costs are going to increase a bit…but ultimately, this should prove to be a good, reliable around-town car for us.  Ultimately, I feel good about it.  It feels good to move forward in ways that make our reality just a little bit easier, and this vehicle certainly does that, on a daily basis.

Appointment days like today are always tiring. But man, it is so worth it when all the news is good news.

We were hoping to say goodbye to one specialist today. Technically, we did, because she is leaving Iowa city. However, Kiran will still need to be followed by endocrinology to assess pituitary gland function. We watch this due to his optic nerve hypoplasia (small optic nerve). So far, all of his labs have come back normal, and we have no concerns. Hoping to hear the same in a few days about the labs he had drawn today.  We thought we might get to be done with this specialist because his brain MRI showed the pituitary gland is structurally normal, but we learned today that isn’t an accurate indicator of proper function.  So, we remain monitored – but we get to go to a year here, too, instead of every six months.

Kiran’s echo went really well, and we now know to always request Roger.  We have had him twice as our echo tech, with someone else in between.  Roger is a calming presence and has abundant patience.  It made a huge difference with how at ease Kiran was, and he was a rockstar throughout.  Roger also takes more time to explain what we are seeing than any other (save one) tech we have ever had.

Cardiology.  Not only did we get our year card, but Dr R feels with what he has seen, Kiran may be years away from surgery.  Like – when Arif said he was hoping for second or third grade, Dr R said he was hoping for even longer than that!  The initial age we were given as a possibility was five, so I will take third grade, hands down!  Of course, this isn’t set in stone by any means – things can and do change – but wow, what great news about the stability of Kiran’s heart function!

Getting labs drawn always breaks my heart, and today was no different.  We requested the j-tip, which is lidocaine administered without a needle. It is basically injected through the skin using a forceful puff of air – best explanation I can give. It’s fairly new at the hospital, but Kiran has had it one time before, when putting an IV in for his MRI.  It seems to work well for him, numbing the skin before having blood taken.  He still cried and sweat a bit – poor turkey – that continues to be the hardest thing.  Kiran is not a big crier, so it tugs hard at the heartstrings when he does.

Kiran’s feet looked really good, and we asked the orthopedic surgeon if he had any concerns about his hips.  Clinically, he felt his hips had good range of motion and flexibility, and he had no concerns.  This dates back to the developmental pediatrician at the CDD telling us three months ago that she had concerns about one of his hips possibly being out of socket or misaligned somehow.  Given both his physical therapists and now his orthopedist have checked him out and do not share this concern, we feel we do not need to follow up with a hip x-ray.  Always good to knock one concern off the list.

All in all, what an exciting day!  We have been so lucky to not have any medical concerns with Kiran for a good length of time now, and it seems that continues to be the trend. So we just keep trucking along, doing what we do.

We are back in Iowa city, at the Center for Disabilities and Development, later this month for Kiran’s cognitive evaluation. In September, we come twice: once for his regular feeding clinic follow-up and once for genetic counseling and testing.

In October, we meet with the neurologist. This will be our first appointment with one, due to the results of his brain MRI. A big reason we were hopeful to be done with one speciality (endocrinology), but no such luck. So, we just add another specialist onto his list of many.

In November, we follow up with genetics. This appointment may change due to the testing schedule. December is genetic eye doctor. And January is another visit to the CDD for the Neurodevelopmental Clinic.

It feels like a lot right now. May they all bring good news – and more knowledge – like today.

WE GOT OUR YEAR CARD!!!!!

I will update more later, but the big news of this morning is we get to go one full year before seeing cardiology again. Kiran’s pressures and heart function all looked great, with little change from January.

Huge. I cannot believe how far we have come.  So thankful his surgery was so successful, and his heart function has been near-normal for almost two years now!

Wow.  It has been a week for summer.  This mama has been flexible with schedule and revamped things around a lot these last several days, so Kiran and I could have some really great experiences.  My latest mantra: “This is our life.”  Best I can explain – The motto helps me let go.  Kiran has to have solid structure in his days, especially around his feeding schedule, because he is tube fed.  But.  I can get creative, we can feed on the go (and we do this, lots)…and sometimes, as long as he does okay, I can go a little longer in between or push meals a little closer together, so we can live. our. life.

We have been doing a lot of breakfasts on the deck.  The mornings have been so nice and cool and lovely these past few days.  We tried out a splash park for the first time.  Kiran and I got in our friends’ pool for his first swimming experience of the summer last night.  It was five minutes (it was cold) but we swam!  We have had family dinners and the Help-A-Heart picnic.  He experienced Taste of Hope, his first time sitting in his wheelchair at church (and he paid more attention to what was happening in the service), and fireworks!  He really saw the fireworks this year, and the noise didn’t bother him.

Mostly, it has just been an exhausting, on-the-go, fun, exciting week.  We have done so much and really enjoyed summer.  I think I realized how quickly it was passing us by, and there are so many things I want to experience with him…so I just started making it happen, rather than waiting for the perfect time/day.  With him, it will always take a little more work, a little revamping, some creativity, a lot of energy.  But man, it’s so worth it.

I am dreading Wednesday.  Kiran’s big appointment day in Iowa City.  We will see endocrinology, have an echo, see cardiology, and see his orthopedic surgeon.  I don’t just dread the hospital day – they are always long and exhausting – but I am anxious for the cardiology appointment.  He is giving no indications that anything has changed, but when you go six months between appointments, it gets a little nerve-racking.

Look for an update Wednesday evening, where I will also outline his many upcoming appointments.  We will be Iowa City bound 8 times in the next 6 months.

So.  Today, we keep enjoying summer.  Two more July days!

Everything will take just a little bit longer.

You have to watch for even the smallest bumps on the sidewalk.

The looks of curiosity you once got in public have quickly turned into looks of pity.

It brings out a new anxiety with every new location you visit … also, a new righteous frustration when places aren’t easily accessible.

It is the blessing you were excited it would be.  Absolutely.  It is the most supportive seating Kiran has ever had, and it works very well for feeding and transporting.

But it’s also hard.

For those not on facebook (or not friends with me), I don’t think I can say anything better than I said on the posts yesterday and today:

Yesterday’s post: “I get a front row seat.  Your story is unfolding, and I am so lucky I get to tell it from a mother’s perspective.  You see, your story is my story too.  Our stories are interwoven and unable to be untangled from one another.  You are mine, my sweet darling boy, and I will always be yours.

You have taught me how love and fear and joy and mourning all coexist and cannot exist without the other.

Time marches on.  Transition is coming.  Tomorrow is an important day in our story.”

Today’s: “This is the first day of the rest of your life.

New wheels.  A new way of navigating our world.  We will figure it out, together.”

It’s here.  The wheelchair is here.  And today was a day of unexpected tears – tears of joy and tears of sorrow; tears of excitement and tears of fear.  It was emotional and important – a “big day in the life”.

The life I am so lucky to share with my precious boy.

 

Just when I feel like I am relaxing into a certain rhythm with Kiran, I feel like I get inundated with change.  With facilitating change, mostly.

You know what’s hard?  It’s hard when your trusted, beloved providers have the audacity to have a personal life.  Tongue-in-cheek, of course.  But – as I am navigating changes on the horizon – I want his team members back from maternity leave!!! (Currently two – his beloved pediatrician and his beloved physical therapist – are home with new babes)  It has been interesting how once clear-cut protocols become not so when the people I have grown to trust aren’t readily available to answer questions or fill out forms or just be the calming, reliable presence they have been his entire life.

Seriously.  When you have a good medical and therapeutic team, they become more than just your team…they are a sort of family.  We are lucky.  It’s one of the pieces I am currently working to choreograph – Childserve wanted to offer us new therapy times this fall (which we need, to work around new preschool schedule), but they offered us times with new therapists.  NO.  I respectfully but firmly responded with the fact our number one priority is keeping the therapists he has, because I absolutely believe we are with the best now.

I am already struggling with the loss of ones who have worked with him his entire life.  The transition to preschool means the loss of 3 of the 5 early access therapists who have been working with him – 2 of which have been working with him for over two years of his life.  And we are transitioning from another therapist at Childserve because she is moving onto a new position.

Remember how I don’t deal well with change?  Remember how the last 3 years of my life have been filled with very little BUT change?

Some exciting stuff: All of Kiran’s wheelchair parts are at Childserve, so it just needs to get put together and we schedule a time to get get it and learn all about it.  I never thought I would be so excited about my son getting a wheelchair.  It.  is.  TIME.  Both of his strollers just aren’t really cutting it anymore – and one is difficult maneuvering most places.  He is getting too tall for his high chair.  He is too heavy to carry – I made the mistake of carrying him into Target the other day because I just needed one thing – and yes, I made it out with just the one thing – but it took me longer to find it than I thought, and by the time I was headed back to my car, I thought my arm might actually fall off.

I don’t know how temporary or permanent the wheelchair might be, but I do know it is the right move for now.  I do know that we need it – desperately – and I am stoked.  Plus I can’t wait to see the light-up wheels.

This is proving to be a rather random post, so here are some other things going on:

Kiran has officially been placed at the neighborhood school nearest my house, the one we visited.  I am very glad we will be in that classroom, though I am still super panicked every time I think about him going to preschool.  I still have time.

We are moving forward – slowly – with genetic testing by doing the whole exome sequencing.  This will require a counseling appointment with forms and parents’ blood drawn, and that appointment will take place in late September.  Results will take 2-3 months.  Maybe by the end of the year, we will know something more about Kiran.

We have been referred to a neurologist – I confirmed this – and I should be getting a phone call this week to set up an initial appointment.  I am anxious about this – in both the positive and negative direction.  I want to know more information about what we are seeing in the MRI and what it may mean for Kiran, but I am also scared to hear this information.  It is not unlike the entire rollercoaster ride every diagnosis and new bit of info has been for the past three years.

Kiran continues to progress in his strength and skills – we are seeing such good progress from him in his therapies.  A couple exciting things: After his dad and I discussed this, we asked our team – and they agreed – to put crawling back on the table as a skill to be worked on.  We had largely stepped away from it, because it seemed he might skip that developmental skill, but we are seeing so much more strength and stability in the hands and knees position and a greater willingness to put weight through his arms.

A big cognitive/receptive language breakthrough this past week: Kiran is beginning to understand the concept of “helping hands”.  I had used that phrase regularly for about a week or so when I reposition his hands on his drinking cup (He always places them in such a way that you can’t really get the cup to his mouth to drink easily.): “Oh, we need helping hands”.  Then, a few days ago, he was very distraught about having his mouth washed after a meal (teething pain) and kept pulling the rag away from his face.  I said something like “Oh, where are your helping hands?”

I am telling you: I saw the wheels turning in his mind.

He paused and looked at me for probably something like 5 seconds but it felt like 20…AND THEN HE BROUGHT THE WASHCLOTH TO HIS MOUTH AND HELPED ME WIPE HIS FACE.

I could have cried.  It is always so exciting and so cool to see him make these connections.  He is learning.  He is growing.  He is progressing.  He is the sweetest.

Oh.  And we transitioned to his toddler bed.  I moved all his furniture around, got him an awesome Iron Man canvas for his wall, and just all around made his room into a big boy room.  I love how it turned out, and he has been a rock star with the transition.  He definitely was taking it all in and seemed a little unsure the afternoon we switched it all around, so I made sure we spent some extra time in there together before bed that night.  He did awesome.

This is probably all over the place for many reasons, one of which is Kiran goes for his summer vacation time with his dad tomorrow morning.  He will be dropped back off with me Monday morning.  We cancelled therapies for Thursday, because he will be with his dad on an overnight trip out of town.  This means I will go four entire days without seeing him.  That is a first.  And it is one I am struggling with.  I am fighting the urge to go into his awesome big boy room and climb into his toddler bed with him – only when I checked on him a bit ago, his legs in his brace are literally jackknifed up onto his pillow opposite his head, so there isn’t space for me.

So much change.  So much transition.  So much to think about and plan for and arrange.  I know life with him may never feel truly settled, as ever-changing as it is, but I will be very glad when we get through some of these big appointments coming up, when our team members are all back at work with us, and when the preschool transition is complete.

In the meantime, I won’t dwell on pushing that fast-forward button.  Time is moving plenty quickly – too quickly for me.  So as much as I will be glad to be out of this stage for many reasons, I am also really enjoying my summer with Kiran.  He’s kinda the best.