My heart feels vulnerable this week.

At preschool drop-off this morning, one of the first moms I met was brave enough to ask me what Kiran’s diagnosis is.  She asked if it was okay to ask, if it bothered me that she was asking – Oh, how it makes my heart happy when people ask questions!  I understand it takes courage – I do – I even struggle with being brave enough to ask others, and I know how much I want people to just ask questions if they want to know about Kiran.  I just wish it was easier to explain him, sometimes.

Hurry up, genetic test, and please give us a diagnosis.

I almost feel more overwhelmed by my to-do list now that I have free time to tackle it than I did when I didn’t.  I think it is because three years worth of stuff I put off is now making its way onto the list.  Suddenly, I have time to meet with my agent and up my life insurance coverage; I have time to take the cats to the vet for exams and shots; I have time to buy a new pair of jeans I am in desperate need of – Kiran being in preschool is also proving to be very expensive, because I have time to do these things.

I am nervous about filling out Kiran’s medicaid review correctly and had to call for some clarifications this morning.  I think I was supposed to let them know when the divorce happened – and although I did mention it when I made sure to change the address, no one steered me in that direction.  I have no one helping me with this stuff.  I feel like somehow we slipped through the cracks with this too – I have never had a social worker or anyone walking alongside me to make sure I do everything right.  Maybe, now that I have all this time, I should figure out how to make that happen.

I also continue to be baffled that every single person I talk to regarding this sounds … mean?  Exhausted, for sure, and I get that.  But… impatient and just all around not pleasant.  I hate making these phone calls for that reason.  I am now on a list to get a call back from a worker after Kiran’s case is reviewed so…. something to look forward to, I guess.

I’m going to give myself some props for tackling things this morning, though.  I have done what I need to today and all I can regarding Medicaid at this point.  Considering where my headspace is today, I call that a success.

Baby steps.  It’s what we do around here.

Kiran’s dresser got turned back over today.  So the diaper changing station is back on top.  I can’t remember when exactly we flipped it over in the first place, but we have been changing Kiran’s diapers on the floor practically his entire life.  And when I transitioned him into a toddler bed and made his room more big boy than baby, I set up a discreet diaper changing area, with everything he needed in a basket tucked under the table where all his special/superhero stuffed animals are kept in a line.

I hurt my back this week.  Well, I actually don’t even know exactly what happened, but I woke up with intense pain in my lower back on Monday morning.  By Wednesday, when it wasn’t any better and literally almost every motion hurt (and I have a high physical pain tolerance), I went to the doctor.

I hate everything about that last paragraph.  I hate going to the doctor, and I hate being a patient.  I hate having pain that makes me feel like I can’t do the things I need to do for Kiran.  My days involve a lot of lifting – Kiran is over 32 lbs, and I lift him multiple times a day.  I also lift a wheelchair in and out of my car several times a day.  When your lower back hurts, these tasks become considerably more difficult and a lot more painful.

I realized a lot this week about the importance of taking care of myself and working to prevent things like a hurt lower back.  I can’t afford to not be able to lift Kiran or his wheelchair.  I certainly can’t afford for something worse to happen than just pain for a few days.

So.  I am focusing even more on how I lift.  I always have focused on this, and I know the appropriate ways to do it, but the back pain certainly helped me really understand the right way (Hint: It’s the way that doesn’t hurt.)  And I am doing my best to get him up off the floor for diaper changes, thus the flipped dresser.  I don’t need to also be getting up and down off the floor, with his 32 lbs, multiple times a day.

I’m not as young as I used to be.

Also, it made me emotional today.  I didn’t expect that, but I started crying while changing his diaper this afternoon (It probably didn’t help the song Thy Will by Hilary Scott was playing at the time.)  I think, in some ways, NOT making these accommodations was my way of not completely accepting our reality.  I think I have always held onto this (super) temporary mindset.  And flipping the dresser, making a diaper changing station a focal point of his bedroom once again, is an acceptance that, though it may be temporary, this part of our reality isn’t changing anytime soon.  I honestly don’t even see it on the horizon.

But we are doing what we need to do.  I have to take care of my body so I am well enough to take care of his needs.  And right now, diapering is a need he continues to have.  And my back needs to not hurt, because me as mobility device and as lifter of his other mobility device are also needs he has at the moment.

Some days, some of these needs are just hard.

Day three of preschool.  I am finding preschool drop-off to be the most difficult thing about this entire experience.  I know in the classroom, they are very good at including Kiran and facilitating friendships with his peers.  But *I* don’t know how to do that.  When all the kids are running around and playing tag and doing whatever most preschoolers do….

I am thankful – I do not feel Kiran is aware of his differences.  I don’t think his heart is breaking like mine is.

Even I feel so different.  I was brave the first day of school at pick-up and introduced myself to the two moms who were there first.  I haven’t introduced myself to anyone else yet.  And already, yesterday, I felt so outside the conversations they were having – “Of course she doesn’t like the doctor – you only go to the doctor when you’re sick!”

Yeah.  Our life is so different.

I know this is only our first not-even-full-week of preschool, but I just feel like I am failing at being the mom of a preschooler.  I just have no idea how to navigate this new area of his life.  I feel awkward all the time – I feel so outside.

I am hoping today helps.  It’s their fall party at the end of the day, and his dad and I are both attending.  Hopefully we will meet some other parents.  And hopefully my entire goal with his costume this year – to normalize the wheelchair and make it something fun for his peers – will be met.

I knew this transition would be harder for me than for Kiran.  He seems to be rocking it and loving it, and I am so thankful for that.

The swallow study today did not go as anticipated or as we would have hoped.  Kiran showed some silent aspiration with thin liquids and even with larger drinks of nectar thick liquids.

We were advised to go back to nectar thick liquids and only do thin liquids in a therapy setting.

We were really hoping to hear we could do thin liquids safely everywhere now.

We had (we thought) successfully moved to thin liquids at home with Kiran. We were going to start out at preschool with half-nectar thick liquids until he got acclimated and were then hoping to do regular water there too.

So, this feels like two steps back. I keep reminding myself that really, it is simply steps we are taking to keep Kiran safe.

It just changes everything. We believed (as did our feeding therapist who has been working with Kiran for a year and a half) that Kiran would always cough when he was aspirating – and most of the time, he is very successful in clearing his airway.

Silent aspiration is scary. What they saw today was liquid going into the airway with Kiran showing no symptoms. He didn’t cough at all when it happened.

It’s a long road ahead when you keep having to turn back around. We journey, together.

I had a lot of anxieties leading up to today, but really, I was surprised how well it all went.  I only cried a little – and it wasn’t at dropoff!

I am lucky that Kiran’s early access physical therapist who will continue with him through age 21 is also my good friend.  She was in the classroom with Kiran today and sent a couple pics and nice messages, so we got to see him partway through the day.

His preschool teacher also sent a message midday to let us know everything was going well.  And we got a nice email from the school nurse after the day was over to let us know his first lunch at school, via tube, went well.

He was happy when I picked him up and TIRED.  I will be curious to see how long he naps this afternoon!  His teacher said the day went well.  He had no fussiness or fits (These are few and far between at home, but I am happy to hear that is translating well to the school setting).  She said he was really tired, and they thought he might fall asleep in the swing at recess (He didn’t!).  She said he definitely made a few friends.  She said no one (apparently OT and Speech were both there today, as well – he got to see all his therapists on his first day!) was happy with the seating at snack time but they ordered a cube chair tray since he sits so well in that chair.  Thankfully, we have a cube chair tray, so we will send it along to school on Thursday for them to utilize until theirs arrives.

Makes me feel good to solve a problem.  I’m still relevant!

At pickup was my first interaction with any of the other preschool parents.  I introduced myself to the first two who walked up.  One is the mom of twin boys in Kiran’s class, and she made a point to turn around and have her boys interact with Kiran when we headed toward the car.  That really made my heart happy.

Overall, honestly, it went so well today.  I’m still dragging my feet as far as this being a *permanent* situation, but I will get there.  It is going to be so, so good for Kiran, and honestly, everyone today made his first day really easy on this anxious mama.

Day One, done.  No preschool on Wednesdays.  Back at it Thursday morning, on our way to making this our new normal.

And hey.  Kiran is three.  He is a preschooler.  We made it.  I am so, so, SO thankful we are here, together.

Happy Birthday, baby boy.  Yes, you are three, but you will always be my baby boy.

Three years ago today, at this very moment, I was in active labor and scared to death.  I was so scared to bring you into this world.  I knew you were safe in my body; I didn’t have that guarantee once you came out.  So many unknowns were swirling around in my brain.

And three years later, today, at this very moment, I am scared to death.  Because now, in two days’ time, I have to send you out into this world.  I know you are safe – as safe as you can possibly be – when you are in my care.  I can’t control your safety when you are not.

Being a mom is hard.  It is our job to protect and love and keep safe … and it is our job to know that we can only do that so much, for so long.

I can’t believe we are here.  I can’t believe you are three.  I can’t believe you are about to be a preschooler.  I can’t believe you are three feet tall and over thirty-two pounds.  I can’t believe you’ve had three surgeries and three caths and three gazillion doctors’ appointments.  I can’t believe how far you’ve come in your therapies and I can’t wait to see how far school takes you.

You are so good at giving hugs.  They are sweet sometimes, but you have also learned how to manipulate by using your hug power.  Oh, we are getting in the car seat?  I don’t want to; I’m going to hug mom really tight so maybe she won’t make me.  You are a charmer, and you know your own power.

You are getting so good at taking steps while being supported.  I am still in awe every single time, because it took us so long to get here.  I love how your knee-bending is still exaggerated and so purposeful.  I know how much harder your brain and body have to work to do this, so I am just amazed with every step.

You are playing with your voice, and I occasionally hear a word that sounds like “mom”.  You especially like to play with “mmmmmm” “aaaaaaaaa” “mmmmmmm” “aaaaaaaa” over and over again, so I know it’s only a matter of time before “mama” gets put together consistently.  You have started to get more frustrated with not being able to fully communicate, but it is never much of a guessing game to know your moods.  You emote well, little man, like me.

Everything about life with you is special.  It is always a lot, but you are so worth it.  I have so much joy, and my heart is full to bursting.  Being your mama is the most important and best thing I have ever been in my entire life.

You are my favorite human being.  You have my whole heart.  I love you more today than I did three years ago.  And I will love you more tomorrow than I do today.

Happy Birthday, Kiran, my ray of light.  You are truly my sunshine.

Overwhelming.  Check.  Long.  Check.

But also, not as overwhelming as I thought.  And long because our current team and future team wanted to be sure all our questions were answered, which I appreciate immensely.  We were definitely a part of the discussion today – a valued part – which makes all the difference in the world.

It is so bizarre saying goodbye to two therapists who have been on his team since he was an infant.  And to two others who have been on his team for the last eight months or more.  I am learning how frequent these goodbyes will be.  Sometimes, they are for good reason and due to our decision, but in this case, they kinda just suck.  We have had such a strong, dedicated, and caring team for Kiran for these first three years of his life.

I feel good about the transition to the school-based team, though.  It makes a difference when you can sit around a table with everyone and realize that they all truly seem to have Kiran’s best interests in mind.  I can’t imagine this transition if I wasn’t working with people I felt that way about.

I feel blessed.  There are still some logistics and communications that need to happen with the school nurse regarding g-tube feedings and emergency plans, but other than that, I am about as ready as I will ever be for this.

First IEP meeting of many.  Check.

Today was busy.  Positive busy, but busy.

Driving to Childserve, I heard a song that is currently on the Christian radio station often.  It is about saying goodbye to loved ones with the knowledge we will see them again.

The first line to that song is “Everybody’s dressed in black”

I don’t know if this was just a way to release some of the emotions and stress I have been feeling the past month (or more) or what, but as soon as I heard that line, I started crying.  It took me back to the outfit I was wearing the day my brother died.  I can picture it, clearly.  I never wore that outfit again.  I gave it to Goodwill shortly afterwards.  For me, I just couldn’t imagine ever putting it on again.

Then my mind went to a poem I wrote about that day, a poem that incorporated what I was wearing as a detail that remains vivid for me.

And then I remembered the very first poem I wrote after losing my brother.  I wrote it very soon after, sometime between the day we lost him and the day of the funeral, because it was read at the funeral.

I won’t take the time to locate this poem now, but I believe I titled it “To My Children”.  One of the first things I grieved was the fact my future as-yet-unborn children would never know their uncle.  This is how much I wanted to be a mom, that this is where my mind immediately grieved.

And then, this afternoon, during my drive to Childserve, I imagined what the interactions would be like today, between Aaron and Kiran.  They would have yelling contests, and it would be hard to choose a victor.  They would have loved each other.  It makes my heart burst with joy and pain to think about how much they would have loved each other.  Kiran is so much like Aaron, something I incorporated into that poem seventeen years ago “Be more like your uncle, children.”  I will never have to use that line on Kiran, because his easygoing nature, his acceptance and love of all people, his attention-seeking mannerisms….he has SO MUCH Aaron in him.

I miss my brother today.  It is so strange, sometimes, when the wave of grief comes back to pull you under again.  In the midst of all the busy and all the transition and all the emotions here, now, that I am living … Today, I cried because I miss Aaron.  Because I wish I could witness what I know would have been such a special relationship between my brother and my son.

How a single thought can break my heart while simultaneously making me smile continues to be beyond my grasp of understanding.

I would never trade the joy in order to rid myself of the pain.

It’s a long road ahead, but we journey together.  Missing pieces and all.

There were things I wanted to write about last week.  I don’t really remember the feelings or thoughts I was having in those specific moments, but the writing didn’t happen.  I was out of commission with a long-lasting bug that was no fun at all.  For three days.  I really, really, really hope the last two weeks are not indicative of this cold/flu season for Kiran and me.  Yikes.

Back in the swing of things today and had to hit the ground running.  Dropped off preschool registration paperwork – finally – it’s been filled out for a couple weeks now, mostly – and only cried on the walk back to the car.

When you have an extensive to-do list because you’ve been in bed for three days, it is easy to push aside the emotions and just keep moving forward.

Kiran has his IEP on Wednesday morning.  It feels overwhelming to me.  We have an amazing early access team that I truly feel have Kiran’s best interests in mind – and, after meeting with the preschool teacher and associates, I truly feel they do as well.  That helps.  I am hoping it will feel very collaborative and accommodating.  Nothing has given me reason to think otherwise.  Still, it’s daunting going into it.

Just keep moving forward.  It’s a long road ahead, but we journey together.