Catch-Up

Oh hey. So, the last 4 months...

We moved! We drove across the country at the beginning of August to our new digs in DC. The trip itself was fun. My sister joined us to help out, and we made stops in New Orleans and Atlanta, where we celebrated Aberdeen’s birthday with the Georgia crew. The move as a whole though was really hard. We spent just under two years in Texas and dealt with a great deal of medical upheaval during that time. By the time I was starting to feel totally settled there, we were up and running again. Getting Abby established with yet another new team, dealing with some new environmental allergies for Abby that resulted in an uptick in vomiting, and adjusting to a bit of a culture shock (DC is BUSY) left me feeling extremely overwhelmed...hence the radio silence. Sorry about that. I’m feeling much better about things now. We’re past the initial appointments with Abby’s providers, got the allergy thing figured out, and are well established at therapy and such now. 

Abby is doing SO. WELL. I don’t want to jinx anything by saying this, but honestly this is probably the best she’s ever done. She’s had a nice break since her last cranial surgery, and her development has really taken off. She now knows her ABCs (and even vocalizes quite a few of the letters in addition to knowing many of the signs), numbers, colors, has officially mastered the transition from laying down to sitting (which has been a huge hurdle), can pull to stand from sitting on the floor, and is flourishing overall. She got glasses back in August, which are too cute, and she’s enjoyed all of the visitors we’ve had lately. She had a blast on Halloween and signed, “trick or treat” all throughout the neighborhood. We spent a lovely Thanksgiving in Williamsburg, and have been participating in lots of holiday fun.

Because things are going so smoothly, we’re going to try this thing called "just living life" for a bit. Crazy, right? Lol. I’ll pop in here and there, but probably won’t be updating here nearly as often. I’ll make sure to chime-in with any big, exciting news, but will leave you for now with lots of pictures from our last few months:

Coke Museum in Atlanta

Georgia Aquarium

Abby's Elmo-themed birthday party

Happy 3rd Birthday!!!

Washington Monument in the background

Her new accessories

Lincoln Memorial

Back at it again

Fall fun!

Halloween

Thanksgiving in Williamsburg/Jamestown/Yorktown

Winter fun!

Happy Holidays!

Story of a Heart Mom

I know that I have woefully neglected this blog lately, and for that I am very sorry. I will do an update post soon (I promise). In the meantime, The Mighty has published another one of my pieces, and I wanted to share some backstory on the "Story" -

I wrestled with what I wanted to do with this piece for months.  It was my first attempt at a picture book, and I spent a considerable amount of time working on illustrations (digital composites of watercolors and photographs), hand-lettering, and revising, revising, revising. A lovely friend offered to edit it, and I felt like it was polished to super-sparkly status. But something about it never sat quite right. I wanted to tell a story that said, "My child is complicated, but my child is valuable. She has worth, and feelings, and a purpose." I wanted to prove that point by telling Aberdeen's story, from Aberdeen's perspective. Ultimately, though, what I was writing were MY thoughts and feelings, and it didn't feel right to assume that what Abby thinks and feels mirrors what I think. After getting some really good advice at a writer's conference, I decided to rework this piece to more accurately reflect what it was already trying to say. It's probably not as sparkly anymore, and it definitely doesn't follow the "rules" of a picture book, but I feel good about it. It's still her story, but it's also my story, it's also Jameson's story - it's our family's story. Even though my plans for this piece changed considerably from what they were at the start, I'm still extremely proud of the work that I put into it, and thankful to all that took a second to read it and give me their thoughts (for some, that was like 20 times). I have other pieces that I'm currently trying to get published, but this one (for now at least) is going to stay in internet land. Enjoy.

The Story of a 'Heart Mom' - The Mighty

(I also included a few of the other illustrations I worked on that weren't featured on The Mighty)

Apprehension

Life

Anniversary Updates

It is the one year anniversary of Aberdeen's second heart surgery - the BIG one, the scary one, the one that was a last ditch effort before having to talk transplant. I am happy to report that her most recent echocardiogram showed NO regrowth following her operation. Most of her heart is still very thick and may be problematic at some point, but the obstruction that was causing her major issues last year is still gone and her gradient is within normal limits. Feedback from the craniofacial team was also positive, and ophthalmology said that her optic nerves looked great (which means no more intracranial pressure - the shunt is doing its job. Woot). They did give us a prescription for glasses that we're going to get filled once we get to DC, but we're pretty well convinced that they are just going to take Aberdeen's cuteness factor to the next level. It felt so good to receive such positive reports as we get ready to pack our bags and move across the country again.

My tiny bookworm

Fiesta at Mission San Jose

Mother's Day trip to Dallas with Nana and Uncle Justin

Hiking with Auntie Jubie

Visiting with Grandma and Poppa

Father's Day fancy dinner

4th of July

Our first and last trips to Texas Children's Hospital

Overall, Abby is really doing well right now, and it has been so nice to have a quiet few months on the medical front.  She is hanging out at about 33in and 25lbs, and will be three in just a few short weeks! She is still all about Elmo, throwing balls, and reading books. She adores our two, big, dopey dogs and thinks that most people are generally hilarious. She recently acquired a few more consonants, which has already helped her make strides in her speech, and I feel like her motor skills have been really coming along. We are so proud of our goofy, adorable girl and can't believe that at this time last year things were so tenuous. She exudes so much joy, and I'm just so happy that things are going well for her right now. Kid deserves the break.

Trying on clothes that belonged to Mommy and Aunties

This outfit is Popsicle brand!

Things seem to be falling into place with the organization of Aberdeen's care in DC (knock on all the wood), we have secured housing on base, and hopefully everything with the move will go as smoothly as humanly possible (knock on wood more times). We're all excited about the prospect of having four seasons again and are optimistic that the DC area will be a good fit for our family. Aberdeen, the dogs, and I have never lived on base, so that experience should prove interesting, but I like the idea of being able to walk along the Potomac once weather permits! We will definitely miss a lot of things about Texas though. It has been great having a few family members reasonably close by and Abby's therapists and providers here have been wonderful. We are sad to say goodbye to our friends and our lovely home, and I, for one, will also miss the abundance of delicious Mexican food. 

Hanging with the dinos at the Witte Museum

In other news, my letter to my pregnant self was recently published on TheMighty.com!
https://themighty.com/2017/07/letter-to-self-child-born-with-noonan-syndrome/
I am in the process of querying literary agents with my picture book manuscripts and praying that someone will give my work a chance. I have been having a lot of fun getting plugged into the children's book community and look forward to making more connections after our move!

To Myself Three Years Ago:

Dear Very Pregnant Self,

I am writing to you from the years ahead because I have a few things that I need to say to you – a few things you need to hear. You may feel like this letter is shaking you by the shoulders, and that’s good, because Lord knows you won’t listen to anyone but yourself. In just a few short weeks, this seemingly endless period of your life will culminate in you bringing a beautiful baby girl into the world. Although, if I’m being honest, those weeks probably won’t seem very short to you either - sciatica, amiright?  Those doctors of yours have worked tirelessly to prepare you for what’s to come, but as it turns out, ultrasound is not a perfect science, and that baby is already throwing curveballs that no one will see coming. NO ONE can prepare you for what’s to come, including me, but what I am here to say is that YOU CAN DO THIS.  YOU WILL DO THIS.

When that baby comes out, with her head all dented in, and her heart failing (I did mention curveballs, didn’t I?) a very large part of you will want to shut down – you will want to shut off your brain from the immense hurt and shut off your heart from everything around you, including that sweet, broken baby. BUT. DON’T. YOU. DARE. Do you hear me? You will sing to that baby through ugly tears and you will hope against hope that she clears every hurdle she comes up against, because that is what she deserves, and she is counting on you for it.

Because, here’s the thing: I am looking at that baby right now, as we get ready to celebrate her third birthday. That’s right, she’s going to be three! THREE! And she is absolutely magnificent.  She has inherited your insatiable, obsessive love of books, has her Dad’s completely ridiculous, class-clowny personality, and she has somehow managed to develop the stubbornness of both of you combined. Best of luck with that. She is, simultaneously, completely her own person. She has a smile that lights up a room and a laugh that LIGHTS UP THE WORLD. There is no other sound like it, and if you want to hear that laugh, if you want to feel it fill you from the top of your head, all the way down through your toes, you must believe that you can get through this. 

I will not tell you that it won’t be hard.  It will be impossibly hard. Your resolve will be tested to its absolute limits, and you will feel yourself crumble to pieces over and over again. But you will stick those pieces back together as best you can, and you will make it through another day. And another day. And another. I will not tell you that it will get easier. Though some things WILL get easier, some things will actually get harder. Handing your baby girl off to brain and heart surgeons after two and a half years of getting to love her will be harder than when she’s three months old. I want you to know this though – listen, because this part is important: there will be more good days than there are bad, there will be more laughter than there are tears, and there will be more joy than there is sorrow. 

You will be transformed through this process. You will learn to stand up for that amazing little girl, and you will learn to stand up for yourself. Yes, you, who balks at the mere idea of confrontation, YOU will become a fierce advocate for your daughter. She will light a wildfire within you that even Smokey the Bear will stand back and admire. She will make you a more complete person.

One last bit of advice: You will need to take time for yourself.  You will need to breathe.  You will need to admit when things are too hard. As much as she needs you, you need her that much more.  As much as she will break you, she will also be the one that fixes all of the broken bits of you. But, Bethany, you CAN do this, and I repeat: YOU WILL DO THIS.

With much love and admiration,

Your Future Self

When Dreams Evolve

First of all, Aberdeen is doing great. We are fully back into our normal routine, with three weekly therapy appointments and the occasional specialist appointment thrown in.  She's essentially back to where she was pre-op skills-wise, which is amazing, and we're working on getting her some new tools to help her progress even further.  Although signing has been an amazing communication builder for us as a family, most people don't understand the signs Aberdeen regularly uses.  To help her communication become more universal, we are in the process of getting her a picture-to-speech electronic device. She will be able to select the image of something she wants on the device, which will then translate the selection into spoken word.  She has to be able to scan through many images to make the selection she desires, so getting the hang of the device may take some time, but we're hopeful that this method will help eliminate the frustrations caused by others not necessarily understanding what she is signing.  Fingers crossed!  We're also going to have her new ankle-foot-orthoses (leg braces) adjusted a little, and are messing with the set-up of her gait trainer again to help her gain more confidence moving around.

We are still on track to see her specialists in Houston in the late June, early July timeframe.  Hopefully nothing will require an earlier trip out there. Her incision has healed well this time around, and though it has graduated to being a pretty angry looking scar, it is closed and moving in the right direction.  Thank goodness! Her hair is growing back in and her tantrums have decreased significantly.  Forward progress all around. The muscles around her left eye are definitely still in need of some time and healing, as they don't want to stay open much, but hopefully this will continue to improve.

Abby has been a lot of fun lately.  She's very into Elmo, loves her books, thinks being outside is super fun, and regularly requests that we have music playing.  Even without a communication device, her signing is becoming clearer and more direct, and she attempts to vocalize words more and more frequently.  She has started hiding her toys and making us find them (very much on purpose), engaging in pretend play, and getting into all sorts of mischief.  She got into her crayon stash and few weeks back and scooted all around the house scribbling on the walls.  I know this is not the sort of behavior that most parents find ideal, but she had never attempted anything like this before, and we were elated.  It was such a great inchstone, maybe even a milestone, that I left some of her scribbles up and have even considered framing them, lol.  We've made it out to a few of the San Antonio sites lately in preparation for the oppressive heat of summer kicking in, and have been having a grand old time.

Family trip to the bluebonnets

Enjoying the spring weather

Easter!

Checking out the deer at the park

Sea World Elmo experience was one for the books

She could not have been more excited...

Until she got to meet Elmo, which was altogether too overwhelming.

Thankfully the noisy sea lions fixed everything

Love my people

We're also gearing up for our big move to DC!  Working on getting housing lined up as well as a plan for Aberdeen's medical care.  I think we have a really good idea in the works right now, but we'll see if everything falls into place the way we hope it will over the next couple of months.  If it doesn't, there are luckily a lot of top-notch medical facilities in the DC area, so we have some backup options.     If you have contacted me about connections in the DC area, and I haven't gotten back to you yet, I apologize immensely (sometimes I am seriously the worst about responding to messages), and fully intend to participate in email debt forgiveness day on April 30, so you may be hearing from me soon. Better late than never, right?  Right?

In other news, I have thrown myself headfirst into an exciting new endeavor.  In the last few years, I've had to realize and accept that my dreams of performing are always going to have to take a backseat to Aberdeen's care. It just isn't something I can really do within our current life framework. While I sometimes mourn that part of my life, as it was and is something that I am truly passionate about, I am ready to let my love of creating take me in a new direction - a direction I can absolutely follow while providing Aberdeen the attention and care she needs. Since I was a child, writing has been something that I have cared deeply about and has been an important part of my life.  Whether it was jotting down little phrases that came to me during the day, chronicling our journey through this blog, or composing poetry, writing has long been close to my heart.  I was never sure that I really had it in me to pursue it in any sort of formal way though.  However, as she has changed many things about me, Aberdeen has given me the inspiration to actually give writing a chance.

In looking for books about medically complex kids, and kids with differing abilities, I've noticed a pretty large gap in the world of children's publishing. I've been gathering ideas for some time now, and have written a handful of manuscripts for picture books focused on this world that has become such a part of us, and I will be sending them out into the universe soon.  I'm hoping to provide a written voice for these amazing kids' stories that resembles the language and imagery that I've always treasured so much in children's literature.  I have no idea what will come of these in the long run.  I'm going to give the traditional publishing route my best effort, but if it doesn't seem to be a subject or style that the publishing world embraces, I am determined to still see them into existence in some manner.  I have a few networking opportunities coming up and am genuinely excited about where this part of our journey may take us.  I will let you know if anything big happens on this front, but since Twitter appears to be where a lot of the process happens these days, you can now find me there as well: @BethRLocklear