Holding Tight

Ever since Aidan was born, and we were given the news that his life on this earth may be very short, I have held tightly to everything that is associated with him.  I'm not even close to a hoarder, I am actually a minimalist at heart - but just about everything Aidan touched, every little memento, everything he wore or was wrapped in... I have kept.  This urge to cling was only magnified when Ty was born and he was given the same diagnosis.

I grasp firmly to such things so that I will always have all the memories, not just in my mind but in some form that I can see and touch.  Gotta cover all the senses, right?!  Yes, I take tons of pictures.  I also religiously fill out their baby books as they grow.  I have stacks of stuff set aside for scrapbooks.  I have files and folders of every paper that bears their name.  And on the topic of names...

One of the most important things I believe a person carries with them is their name.  A name says "I am here!  I exist!  I mean something to someone!  I am someone".  Aidan's name is often spelled wrong.  I see it spelled Aiden all the time, and I know it is an easy mistake to make.  But it is Aidan.  I know if Aidan hadn't been born with a life threatening condition I would probably never even flinch at all the times I see his name misspelled.  Yet, I know he has no voice.  He can't speak up and say "Hey!  That's not how my name is spelled!"  I feel it is just one of the many ways I speak up for him, making sure his name is spelled right.  It's a way I can hold tight and preserve a special part of him - his name.  I know, in the grand scheme of things a simple switch of an A with an E might not mean that much to most people.  Like I said, I hold tightly to all that is Aidan and Ty (and Cole of course!).  This is his name!  He will always be known, always be remembered, as AIDAN!  

Recently we had to say good-bye to someone who meant the world to Aidan and Ty.  Their physical therapist, Dolores, lost her short battle with cancer last week.  Ty and I attended her prayer service yesterday evening.  Saying good-bye is never easy.  Saying it to someone who was such an integral part of the boys' life was heartbreaking.

I am thankful that Jason and I were able to take all 3 boys to see Dolores shortly before her passing.  I couldn't imagine not having had that moment.  She held Aidan, she held Ty - and they knew her.  It had been weeks since they had seen her yet they knew her voice.  She held their little hands just as she always did when she first came into our house.  It was her first time meeting Cole, as she had been diagnosed shortly after his birth.  I had always imagined she'd be there with us, every Tuesday - not just for the boys' PT but also there with us to appreciate Cole's weekly developments.  It's very hard to think that she will never walk through our door again, greeting the boys with her soft & gentle voice.  She was like a Grandma to them.  She had been their physical therapist since they were born.  She was important to our family and I know she meant the world to her family!

Aidan (16 months) & Ty (2 months) practicing head control!

Dolores with Aidan & Ty :)

On nice days, Dolores made sure we got the boys outside!!!  Ty's working hard on the exercise ball!

Thinking about Dolores and the crucial part she had played in Aidan and Ty's life made me realize just how tightly I hold on... Having a piece of the boys' life slip away has been very hard.  She genuinely loved them very much.  It hurts to lose someone who has seen Aidan and Ty for the little boys they are!  She was never one who tried to 'fix them'.  She just let them be who they were.  She played with them, she enjoyed them, and they in turn loved her to pieces.  For that, we are forever grateful.

What we call Sunlight Therapy!!!

Dolores helping Aidan hold himself up on the exercise ball!

I don't think it's any secret that our biggest mission in life is to make sure Aidan and Ty have the best quality of life possible.  I thought about this the other day... and it occurred to me that 'Heck, I want the same thing for Cole!' Don't we all want the best for our kids?!  Shouldn't we all have the goal to make sure we are giving ourselves the best quality of life?!  Lately I have been realizing more and more that a happy family will make for happy children =)  Our entire family has to take care of ourselves, we all have to be healthy and well-cared for.  Jason and I have to be kind to each other, we have to love each other - this is the best gift we can give to our children.  A happy home will give them the best quality of life!  THAT thought is something I have been holding to very tightly lately...

We have Aidan and Ty involved in a few different therapies. We have never wanted to "make" the boys do anything they didn't enjoy.  Sure, sometimes they have to work a little harder than other times.  But we would never have them be involved in anything they didn't truly like.

They recently started aquatic therapy - they LOVE it!  And after searching and researching for months, I think we have finally found a chiropractor who will be great for them!  This is something new we are trying out.  I've heard great things from other parents about the power of chiropractic care in helping with seizures and boosting immunity (among other things!).  Plus, this is right up our alley in regards to being as natural or homeopathic as possible :)

I want to share some pictures of the boys during some of their therapies.  They always work so hard at whatever it is they are doing.  Aidan tends to work hard while smiling, Ty often puts up a fight but works hard nonetheless... I love their two different personalities...

Aidan (18 months) & Tyler (4 months) in their pool in our bathroom!  Relaxing!!

Aidan at the chiropractor - we have rarely seen him lie face down before - and he was SO relaxed!  He loved it!!

Ty getting his back rub ;)

Ty at aquatic therapy.

The boys working on holding things in the water!

Aidan practicing sitting on the steps at the pool!  What a sweetie!

Aidan trying another new thing in the pool - and Ty 'swimming' laps!

Art projects at home during PT!

Ty getting messy with some shaving cream!

Aidan making his mess!

Swirling paint in the shaving cream.

Making a fishy!

Ty holding the pencil and swirling the colors around.

And of course, the best therapy of all -- playtime with Mom & Dad and all the brothers!!

Aidan and Tyler's Fundraiser has begun.  The proceeds will help us in many, many ways... I am always on the hunt or researching ways to improve the boys' quality of life.  In Mom terms, I am always finding new ways to make or keep them happy :)  Any toys, therapy, services that we can do & that will help the boys, we will surely try!  

The Fundraiser is by Scentsy -- if you like great smelling stuff, then you are in luck!  We are so thankful to all who love and support our boys.  We have a few new adaptive toys that we would like to get for the boys, so  are very excited for this fundraiser!!  Plus, it will help us keep these therapies going (swimming, chiropractic care,  and horseback riding someday soon!)

Check out their Fundraiser Page - https://jenmakesscents.scentsy.us/Buy?partyId=36401820

If you do order sure you see the Tellinghuisen Fundraiser up at the top so that you know the proceeds will go to the boys!!  Feel free to spread the word =)

Upcoming...

Mother's Day!  Wishing all you amazing Mothers a great day!! I'll be posting pictures soon of the precious gift I got from the hubs and my boys!  I am one lucky Mama!!!