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!


Lessons from a Wheelchair

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.

New Wheels

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.


Random Updates and Thoughts

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.

Letting Go

A thing happened today that has never happened before.

For the first time since Kiran has come into my life, while I have been physically with him, I let go.

Usually, when I am with Kiran and someone else wants to get their hands on him, I am never able to fully let go of the responsibility.  I am hyper-aware of his location at all times.  I am aware of the hair-grabbing, the slobber running down his chin, the loud noises he makes.  I feel like I still need to be in charge.  I feel like I have to run interference.  I feel like I have to be responsible for every action.

Now that I think about it – I feel that I have to be sure the person holding him is okay.  Is comfortable with him.

I attend church pretty regularly with my people, and even during the service when Kiran is passed from lap to lap, I have never been able to fully let go.  I am always shushing him, aware of when he has someone’s hair in his slobbery hand, asking if they want me to take him.

He is my responsibility.  He is mine.  I am the mom.

Today, I was able to let go.  I handed Kiran off, and I was able to relax into my seat and engage with the sermon.  I was conscious of it happening.  I literally said to myself “It’s okay.  He has him.  Kiran does not have to be your responsibility every second.”

And I knew it was true.  Kiran was in the lap of someone who loves him, who I trust with his care (This statement is true of so few people.)

I let go.

I am proud of myself.  This was a huge step forward in the name of self-care for me.  I am taking other important steps forward lately – some important ones this week, even.  It has taken me over two and a half years, but I am realizing the importance of also caring for me in all of this.

I am learning to accept help – even ask for it – in ways I haven’t been able to until recently.  I am learning to acknowledge the guilt I feel for taking bits of time for me – but do it anyway.  I am learning that every moment doesn’t have to be scripted and therapy-approved and working toward some ultimate developmental goal – that it is okay to just giggle and read books and blow bubbles (without all the added “have-to’s” I always throw in from therapy).

I am learning, in small but important ways, to let go.