Homeschooling: A NEW ADVENTURE

Now I know homeschooling isn't for everyone, but EVERYONE has an opinion.

My opinion is I want my children to be home, safe, learning, and their moral compass set before we branch out and bombard them with the outside world.

Now this isn't to say I shield them, we do go to Taekwondo 3 times a week, and attend church when we can with my crazy work schedule and strongly encouraged our oldest to go to summer camp.

We did pre-school at home, and unit studies during the medical adventures with the baby, but this is going to be full on 100% invested school time scheduled out. 

Big sister is going to be 6 and is SO excited she can hardly contain herself.  As I prepare school supplies and she sees her books and the equipment she is READY!  

Our days are going to be unique because with my works schedule I will be getting home from work at 8:45am and laying down for a nap after breakfast with the kid...

 Dad is going to do a Minecraft math/science/worksheet lessen or watch Magic school bus/sid the science kid/documentary with them while I sleep,..

Around 2pm I will get up and do the formal portion of the day using the Abeka kindergarten program for the big sister and easy peasy all in one homeschool for the middle sister.

This schedule is going to run from Monday to Wednesday(adding Taekwondo on wed, nights),

Thursdays are Therapy days for the middle and little in the morning with Teakwondo in the afternoon

Fridays are Taekwondo in the afternoon and we will do a field trip or Home economics type day along with the formal schooling for the oldest and middle sisters...

This seems crazy and jumbled but we are excited :-)

We are ready for our kids to jump into more learning and hopefully get the emotional health of our oldest back to what it used to be.  Her anxiety has skyrocketed since her brother was hospitalized and so anytime you mention her going somewhere without us she freaks out and is inconsolable for hours afterwards.  Every child deserves to be heard and she wants to learn, but specifically said she wants to do it at home...so to those who don't agree with this approach she's our kid not yours...to those who understand and are supportive, 

Thank you.

School officially starts September 5th, 2016 for Team Needles!

Curriculum came in the mail..."it was like Christmas presents..." said by the big sister :-)

What Comes Next?

Here we go again...

Looking for answers, we have a list of symptoms, the referrals are being sent...

Neuropsychologist...Check

Behavioral MD...Check

Pediatric Gastroenterologist...Check

Thyroid test...Check

Safety bed being searched for by DME...Check, Check, Check (3 medical supply companies :-) )

Call into insurance to see about coverage of needed safety bed...Check

Starting our first full homeschooling year...yes check for next week 

And book completely launched...as if the rest of life happenings wasn't enough!

All these words running through my head,

 AUTISM,

 LARYNGALMALACIA, 

NEUROMUSCULAR DISORDER, 

LARYNGAL CLEFT,

 HYPOTONIA,

CELIAC, 

SAFETY BED...

what could possibly be next for us?

We have an active and absolutely awesome little man who is having some anger and self-harming issues, we just got done discussing these with his doctor today. 

On top of the feeding tube and all the testing he has gone through we are noticing some regression in the strides he has made to date orally and so upon further consultation with the ENT we are possibly being directed to Seattle Children's Hospital.  

Another set of new doctors, but our hope is that because their specialty is children we will get the answers we need, and most of all DIAGNOSIS! 

That magical term that makes it easier to help our son fight and possibly win the health battle we have been raging since he was 5 months old. 

Yes, I said WAR.

That is what this last 1+ years has felt like. 

And I want to win it for my son, or help him find the care he needs to at least live safely with what he has.  

The crazy part is our oldest child has been the "typical" one, nothing abnormal or delayed other than asthma and some anxiety from the events of the last year with me being at the hospital separated from the family with the baby. 

 But if the Laryngalmalacia is a factor her "asthma" that the doctor's have never been willing to classify as such could mean she has a very minor form of it along with the other 2 kids. 

Finally it would be something that answers all the questions and is livable, and would tie all my kiddos together and give us answers for her chronic symptoms and her need for inhaled steroids for 8 months of the year. 

God, help me I am exhausted lol.

But I have to be like Dory on Finding Nemo,

"just keeping swimming, just keep swimming, just keep swimming, swimming, swimming..."

Because as parents, not just parents of kids with medical complexities, PARENTS! period that is what God has called us to do...Take care of these children to the best of our ability, you WILL be given the strength when you are just physically and emotionally exhausted and don't think you can do it one more minute. 

 Cry your tears and wipe them away with your fears for the moment. Hug those babies and have a super goofy dance party in the living room or make memories with an adventure because it could always change at a moments notice.

I am guilty more often than I should of letting my emotions and fears overwhelm me and it makes me LOUD, it's embarrassing to admit; but I am trying to change that. 

So I say those things for me just as much as I do for those reading this. Parenting is messy!

But I am finding the beauty in the mess, happy in the tears, joy in the exhaustion of it all...it's going to be okay, answers I can feel it are on the way.

GO TEAM NEEDLES!!

          

          

Wild Hare

My Belly Has Two Buttons is now available on Amazon.com for e-book sales, and in a matter of a few days will be available for paperback sale.

It doesn't seem real...just a few months ago I was writing the manuscript, feeling led to write something, anything to explain what my son was going through. What I hoped for him.

I hope that he feels confident and safe, not embarrassed or ashamed.

I had no intentions of publishing this year and possibly just keeping the story to myself and sharing it with him if things ever got hard for him, but for some unknown reason I was having my sister start illustrating it regardless just to see what it could look like. 

 And then I was scheduled for surgery and had more time to "myself" recovering than I had in the last two years at the doctor's orders...scanning the feeding tube sites on Facebook and I kept seeing so many parents searching for children's books. Not just any children's books, Feeding tube specific, and modifying books they already owned by drawing a g-tube on the tummy of a character so their child felt a part of it.  

I found myself researching publishers and even speaking with one in Virginia, but finding that either they didn't take first time authors or the cost was WAY out of my realm of possibility and they might not use my illustrator's amazing pictures (Rebecca Robertson)...but then I remembered a childhood friend had published a book in the last year so I looked up her book publisher and then contacted her to get more information. 

Jesse with Publishing our children's stories was the woman who made what seemed impossible possible.  I was so excited to hear her ideas and see what the publishing process entailed. I found the funding and had the support of my family in moving forward with this crazy adventure and now almost 4 months later it's going to be a reality!

I tell you all of this not because you should follow EVERY wild hare you get in life, but that in our circumstances things don't normally come easy, and most especially in the last year I've felt like my little family is fighting a war that we won't be able to win with health concerns and finances. But for some reason this book is SUPPOSED to be written, maybe not for me or my family specifically, but maybe for another family who's child is struggling to feel like they belong somewhere or to encourage that mom in the waiting room of the hospital while her child is in surgery getting his or her feeding tube...

I hope this book can also get people outside of this community asking good questions, and to better understand just what we as Tubie Parents do every day. That they can look at us and our kids and say "I get you" "I am proud of you" "I don't pity you, and I want to know how I can be supportive"

This journey is sometimes very isolating, I think that is true with any child or family member who has a special need.

Let's stop allowing these families to isolate. Engage them and encourage them in any way you can. And feeding tube families; be willing to answer and not be defensive I know how people can and have been when they find out a child has a button, It can be very abrasive, but we need to remember they don't know what's gone on, they obviously are curious and if we take the time to respond it will only benefit any future encounter they have the next time with a Tubie.

So I hope you all look forward as much as I do to the paperback launch, there is just something about knowing that I will hold in my hand the object I've been picturing in my mind. It's scary! I've done things I never would have had the courage to do, like invite local medical professionals to the Book Launch Party in my town, make a video book trailer and post it on YouTube, contact news stations/newspapers/book stores/magazines to see if they would be interested in helping raise awareness. I've even now had an offer to become a mentor with a program called The Power of Two. Its to help other parents who are new to Pediatric Feeding Disorders. Give advice, help them find the courage we know is in them to fight and advocate for their child. I am not an expert by any stretch, but I am excited to possibly help someone learn how to find their inner warrior because having my kids has certainly brought out mine. 

So all you Tubies, Warriors, and knowledge thirsty people; lets change the world and put ourselves in Nico's  shoes for just a few minutes and enjoy "My Belly Has Two Buttons" and hear him tell you about his 2nd button and all the things it does for him, but doesn't limit him in being an active 2 year old.

Thank you

Meikele Lee

 https://www.facebook.com/meikele.lee