Making A Wish!

 

 

Today a large envelope arrived in the mail addressed to Hank. Inside was colorful sheets with the cover page having a large Blue Star affixed to it. Hank has been selected to Make A Wish through the Make A Wish Foundation. Cue the tears.

 

First off, I am extremely grateful for this opportunity and excited for Hank to have this experience. Secondly, I am absolutely broken that we have come to a place where my little boy could even qualify for this. I am still processing the past week filled with sadness and something about this seems all too real of a validation of how hard things have been. Bittersweet. Bittersweet, always.

 

I am unsure how we will help guide Hank in this process as far as to what he will wish for. Right now he is obsessed with BBC documentaries about Antarctica and penguins and helicopters - so something that has relevancy? No Idea. I am, however, so excited to slowly begin to explain to Hank what this whole process will be.

 

I want to share this one (heartbreakingly beautiful) excerpt from a letter they send to the parents as it summarizes so well what this whole Wish is about:

 

 "Hold your child's hand and reach for the stars together. Forget adult worries, thoughts of bills, hospitals, and treatment plans. Allow your child to reach for the wish that will come true. Reach for HOPE, STRENGTH, and JOY!"

 

 

 

 

 

The Waiting Days

The anxiety sets in around bedtime. The moon is contrasting the darkness and yet, unlike the naivety of children, you know better then to make a wish. You've been here before, all too many times, and you know there is nothing but time. Today is a waiting day; a long, slow day that will exhaust you more emotionally than any physical activity ever could.

I had this kind of day before Hank underwent his first surgery, before I met the woman who would ultimately give us an autism label, and also while I, for the first time, had a neurologist explain our new life path with epilepsy. I stressed and grieved and played out every scenario possible when awaiting his genetic results that ultimately shattered us.

Here we are again. Waiting.

Waiting on the results of another large curveball thrown while we weren't even trying to step on the field.

It is time to wait for a phone call with a result, or a new plan, or an appointment so this can all be discussed in person. It is the kind of day where you want to be in the comfort of home, but will force yourself out into the world in a defeated attempt to kill the time. Every ringing phone will send your aching heart into a panic as will every moment that the call doesn't come.

I remember vividly the sincere difficulty of waiting as a child and I long for the joy that was usually the result. It was finally 3:00 and school was out, eventually December 25th would come around, and without a doubt my birthday came every year. When did the wait in my life start always signifying such sadness? You don't have to answer that - I'm just asking to kill time.

It is a day in the life; one that moves as terrifyingly fast as the waiting runs slow. I reflect upon the days of waiting we have overcome before and muster up just enough optimism to be reminded we have done this before, we will do this again, and this is just what we have to accept. I however, can not wait, to give my precious boy a hug after school.

 

"Somebody told me this is the place
Where everything's better and everything's safe."

 

 

People always seem surprised when I am asked about my favorite  place in Europe and I reply "Amsterdam." While they may immediately assume I am a pot-head, the truth is I adore that city in particular because it simply connects with me. I love everything about it but most importantly the way it makes me feel. (no, not a contact high. ;))
 
This post isn't about Amsterdam though, but rather the places that give that "Amanda in Amsterdam" kind of feeling.  The kind of place that brings happiness without effort. There is a tiny place about 20 minutes from my house that does that, and despite all the ways it could be discredited as small or just a pond, the fact is it makes me happy. It makes my family happy.
 
You know that stressful feeling towards the end of the day where it is early enough you know you should get stuff done, but feels late enough where you are just over it all? That was my Tuesday at 5:45. I didn't have a dinner plan, my kids were cranky, and I was ready for us all to be in bed. Brandon suggested we go to Stratton Brook State Park, and finally my night was looking promising. We picked up a white pizza (bacon + spinach) from the best pizza place in my town and headed to the "beach."
 
This is exactly what we needed. This little pond has lots of sand, endless trails, picnic tables, cleanliness, and the perfect toddler water (it is so shallow with no drop offs!) Hank loves the independence of running into the water, and I love sitting and watching him. No, but really sitting down is a rare and wonderful thing. This makes for my favorite place for play-dates during the summer and also for random family pizza nights.



I couldn't love this photo any more.




toddler feet. squeeee.

Theo is getting curls! (also, that is him fisting pizza he stole right from the box!)



Brave and happy ,Hank!

 

A rare occurrence of myself actually in a photo.

 

 

What is your favorite local happy place? Comment and let me know :)

 

Safe Travels,

Amanda

 

Peaks+Valleys: a Hank update.

 

This blog entry will be a grab-bag of emotion. While I couldn't be happier to share a few of these things,  for others I simply have a pit in my stomach at the thought of writing these words and solidifying their truths.

 

Here goes nothing.

 

A little while ago, about 15 months to be exact, we went on to the wait list at Connecticut Children's Medical Center department of Developmental Pediatrics. The current waitlist is about 2 years, so I won't complain about the 15 month thing. The appointment itself went fine and Hank had fun (it was all play based.) The results, however, were less than ideal. There is a referral being done to a genetic neurologists for "syndrome testing" and also to follow up on a large concern that Hank may be having nightly seizures. Some kids get all the luck, right?

 

But why stop at seizures and syndromes, surely there is still plenty more we can throw at him?

 

While we still await the official summary, the spoken prognosis given to us for Hank's speech is extremely small and possibly non-existent. They have recommended fitting Hank with an AAC (augmentative and alternative communication) device. The goal is to provide him with a form of expressing all of those incredible thoughts running around in his mind.

 

And I fully support this.

And I am genuinely excited at the prospect of having him be able to converse

and to ease the frustration he feels daily.

 

However to get to that place, I still have to grieve some. Hearing "Mama" is one of the greatest joys I have experienced so far in being Hank's mama and I need to accept that may just be all he verbalizes to me in his own voice. I will still hope, pray, and wish that he is able to speak one day, but I will also prepare myself for the potential realities.

 

So for now, it is just hard. It is a lot more money, a lot more therapy, and a lot more battles ahead to get to this next phase. But I know us and we will find a way to make this okay.

 

I do want to end this on a positive note, because although this last week has brought some seriously heavy crap our way, it has also been a big week for Hank with some good things!

 

Hank no longer takes a pacifier. We were waiting for our trip to end and for the routine to settle back in before gently pushing this and thankfully, he handled it all much smoother than we had expected!

 

Want to know something even better?!

 

Hank is in underwear full-time! I will give credit much more to Brandon for this because I had no motivation to really dedicate to this. Hank + Daddy had a whole day of success the first day and the momentum just hasn't stopped. 5 days later and only 2 small misses! We have done outings, car rides, and even naps, and all dry!

Thank you, pretzels, for being his motivator. (Yes, true story.)

 

So there it is. A week with quite the peaks and valleys. At least there is a balance, right?

 

Thanks for reading, and for the good thoughts headed his way :)

 

Safe Travels,

Amanda

 

 

 

 

 

 

Father's Day Gift Ideas

 

 

Depending on how your Mother's Day went, you may be wanting to spread a little love towards your husband this year for Father's Day. I, out of the kindness of my heart, have narrowed the list down for you with the best things out there. You're Welcome.

 

 

This, is the best thing I have ever see.

 Obviously my train obsessed Hank bought it right away for his daddy! Perfection. Buy it here.

 

 

 

This personalized keychain rocks.

 

 

 

and  This, if the Dad in your life loves golf.

 

 

This Cufflink Box from Pottery barn in fantastic.

 

This shaving brush and shaving cream are a daily-used favorite gift from last year.

 

 

For the grilling kind of guy. Personalize your Steaks this summer with this.

 

 

 

 

 

Happy Father's Day Shopping!

 

 

Safe travels,

Amanda

 

 

Oh, EO. Essential Oils - Part One!

I fell into essential oils about 6 months ago or so. I had heard and seen the term “EO” all around my crunchy groups but was never really interested, as it seemed just a little too crunchy for me. However, Hank went through a really rough period with sleep a while back. It was really bad, as in waking up for hours on end and completing ritualistic patterns endlessly. He was exhausted (as were we) and it was painful to see him like this. We tried everything, and even had an appointment to shell out $1,700 for a sleep study at an autism study center. When I heard a few things about these oils and their ability to assist with sleep, I was more than willing to give it a shot.

     Okay, for the record I am obviously not claiming that Essential Oils will cure autism or even make a drastic difference for anyone. I definitely know people who have tried EO with no real luck. For us however, they have been a golden supplement. I purchased some and when they arrived I made a “sleep potion.” The first night was a little better, with the second and third nights increasing his amounts of sleep. Within a week Hank was sleeping like a typical 2 year old, and I was forever an advocate for the use of essential oils. It wasn’t that it put him to sleep, as much as they allowed him to be more calm and accepting for sleep to come, if that makes sense. Hank loves “yummy feet” and requests it every night before bedtime. We simply rub the rollerball mixture on their feet and rub their feet together. Easy. Effective.

 

 The Sleep Potion:

• 1/2 parts "Calming"
• 1/2 parts "Tranquility"
• A few extra drops of lavender

Both calming and tranquility are blends made by Native American Nutritionals*. Calming is a blend made with Tangerine, Ylang Ylang Complete, Orange, Blue Tansy, and Patchouli. Tranquility is a blend comprised of Orange, Tangerine, Patchouli, Lime, Ylang Ylang Extra, Lavender, Blue Tansy, German Chamomile, and Citronella. I mix it into a roller ball that we rub on the boy’s feet before bed. There is nothing too strong in these blends that makes me feel the need to dilute, however adding some fractionated coconut oil could easily be done

We use a variety of EO in our house, on a daily basis. From sleep potions to cleaning, there are an endless amount of uses! Stay tuned to learn more, as I will be doing plenty of additional entries about all our uses!

 

Safe Travels,
Amanda

 

 *I exclusively use Native American Nutritionals for my EO. I could go into a bunch of reasoning, but just imagine me scouring the internet for a few too many hours of research, reading reviews, and talking to some EO experienced friends. Basically I like them best because they have amazing quality therapeutic grade oils, great costumer service, and no middle man pyramid sales.  They are pure and organic oils with a great sourcing philosophy backing the company.

 

Nursing at 8 months!

Theo is a total rock-star at nursing.

No really, a rock-star. As in, up all night, no sleep, boob-obsession, rock-star. I say to my husband that I am over breastfeeding him probably once a day. I feel so touched-out. I wish desperately for him to sleep longer than two hours. I want to try on clothes in a fitting room without having to make sure my breasts are easily accessible. After nine months of pregnancy and eight months of exclusively breastfeeding, I want to just have my body be, well, mine.

 

 

 

 

But kids are amazing at finding ways to make you forget the bad stuff. This is the dangerous thing that makes people have more than one kid, why Santa still brings Christmas gifts to the naughty, and  this is why I still nurse my ever-demanding baby. I am doing what is best for him, yes, but also for me. Breastfeeding allows me to experience selflessness, love, dedication, devotion, and my son's gratitude every day two hours.

Oh, and I DARE you to tell me to cover up.