Serendipity

Wowzers

What a relief it is to have such caring friends and family.  But stop it.  Stop it already.  Quit it with the worry and the tears.  When you talk to me about my son, don't let the water well up in your eyes.  I can see when your face turns red, and then I worry for you.  I don't want to.  I mean that in the most loving, sincere, genuine way.  I love you for your worry. But I can't handle it.  So stop.  

I consider myself to be a strong woman. I don't like people to see me cry. I don't like seeming weak. This probably stems from a bad relationship had in my late teens.  Due to his issues with addiction, it met its demise by the time I was 21, all for the best.  I learned a lot about myself, and more about my family and my friends. I made some horrible decisions that I regret to this day.  Ones caused me to cut ties with friendships I thought I would've had for the rest of my life. I learned that the first time you cry in pain, they'll never forget that.  Your loved ones will never be able to erase how bad you hurt.  

It is because of this knowledge, that now, in my later years I try to mask any suffering and pain.  I know now it's different. I know that our struggle now is not a result of my poor choices. But I don't want people I love to worry. I don't want them to be in pain.  I've been complimented about my optimism in the face of our challenges.  I'm like that only because I've been in a place in my life where I have been the exact opposite, and it got me nowhere.  It will get you nowhere to worry, so please, please, continue to lift me up with your happy thoughts, your powerful prayers, and your advice.  It is impossible for me to tell you how compelling these are, as there are no words to describe it.  

Serendipity - an aptitude for making desirable discoveries by accident.

I left the DMV today after taking my Indiana driving test.  Who knew you had to retake the test when you moved states?!  I even had to study.  Good Grief.  I passed though - woot woot! I guess its officially official that I'm a Hoosier.  As I left, I wondered what I was going to make Toby for lunch.  After only a week of getting Toby's Celiac Diagnosis, I'm still a bit overwhelmed at the concept of making buckwheat pancakes, and rice flour bread.  So, instead, I've been trying to replace his usual favorite fare (French Fries, Mac and Cheese, Pretzels and Cookies) with store bought gluten free options - until my brain can wrap itself around the idea that I have to home make my own bread now.  (I know they sell store bought gluten free bread, but I can't stomach the price - this just drives me to learn something new - bread making!) 

Our first homemade GF mac and cheese was a success!!

I recalled, from doing my research, that Penn Station only uses their deep fryer for their natural cut french fries, and thought about how much Toby would enjoy a fresh batch (or a fresh single french fry, his usual limit). Pulling out the of DMV parking lot, I asked my good friend Siri to lead the way to the closest shop.  You'll never guess what happened next.  Just three miles from my starting point, I made the left hand turn into the mini mall plaza, and saw the sign with the red letters I had been searching for.  But right next store, something better stood out. 

This.

Serendipity's Specialty Foods.  I was told there were a few shops in my area that sold gluten free ingredients, but I hadn't had time to research them yet.  I didn't even know the names of the stores.  Until Now.  I had been lead to a treasure trove of gluten free fixins! Can you even believe it!

All of those orange labels, that's all stuff I can use!  You might as well start calling me Betty Crocker :)

If you recall, I had attempted some gluten free shopping when I first heard our diagnosis.  I went to Jungle Jims.  If you aren't from our area - Jungle Jims is a zoo.  Almost literally. 

I get why foodies like this place.  I totally see how the bouty of international fare can be exhilerating for those that like to cook. For me, I hated it.  It was too big, too loud and there were WAY too many people.  Everyone just get out of my way, and let me shop in my asile, as slow as I want, picking and reading whatever I want.  Get off my back. 

Can you tell I wasn't really fond of our experience?  So this.  This place.  Serendipity's.  What a welcome site for sore eyes.  I was greeted as soon as I walked in with a warm smile and a pleasant hello.  She asked if she could help, and I explained to her our recent diagnosis, and that I was just starting my adventures in the GF world.  She seemed excited to help, and lead me down an aisle filled with GF mixes, ingredients, candies and snacks.  This.  This was a lot more my pace.  I can handle this.  She even handed me printed out, GF recipes they kept stored in plastic containers at the front of the store.  I can definitely do this.  

I walked out without any physical fare (I was on track for those french fries remember!).  Instead, I left with a new appreciation for, and longing for learning.  I wanted to get home and research recipes and meal plans.  The thought of shopping for my ingredients doesn't seem so overwhelming now.  What a precious gift God has lead me to, peace of mind, yet again. 

Your help 

Your help has been insurmountable.  Your outreach has been inspiring in more ways then you know.  I know I haven't been able to write back everyone yet, or acknowledge offers of help, but I'll get there!!  Mostly its because I can't think of the right words to type, I'm just not sure how I can adequately portray the thoughts in my head.  All of the positive reflections happening. Just know that I hear them, and I'm so very grateful you took the time to write them. 

I'd like to share with you some of the outreach that has been sent my way. 

"My 16 year old daughter was diagnosed with Type I Diabetes when she was 2. When she was diagnosed, the standard treatment was a mixture of insulin shots and a diet of 3 meals and 3 snacks every day at the same exact time (timed to the rise/fall of the insulin). She was fragile to me when we came home from the hospital after her diagnosis. I was obnoxious, I asked every restaurant for the nutritional content of every menu item, freely lectured them that it is required by law if they did not have it available. I was insane. But soon, counting carbs, timing snacks, poking her with a needle and pricking her finger became normal. And second nature. I still pray every day that they find a cure. I worry EVERY DAY about her health and her future. But I know there is always hope. She is tough and smart and mature because of her plight. And it's made her family stronger too. I know you will experience the same & Toby will grow up to be a strong, smart, empathetic person because of his journey. Hang in there and know that there are so many others that can relate to everything you're feeling right now." 

"It is hard sometimes as medical person to see the concerns, worries, and thoughts the family goes through. You are giving all of those worried about their own children a sigh of relief that they are not the only ones."

"Hello Stranger!  I promise you are doing thing right!!!!  They will uncover What's going on with Toby.   I feel I neglect [my daughter] a lot due to [my son's] problems so I make a point to take her on dates.  Just her and I we do what ever she wants!  She eats it up!  If you ever need anything let me know, I understand the stress you are under!"

"I just wanted to tell you that my heart goes out to you.  I read your blog. And it breaks my heart.  My heart goes out to you, doing all you do, as well as taking care of another child. I'll be sending good vibes your way.  And if there is anything we can do, please let me know."

"Just read your blog entry and wanted to let you know I'm thinking of you guys. Your words are so touching and brought tears to my eyes. Can't even begin to imagine. Stay strong. You are an amazing mommy that clearly loves her babies more than anything. Take care."

"I read your experience about the blood sugar stuff. It hurt my heart and I can't imagine how scary that was...again it made me think of [my son] and all the frustrations and difficulties we had when he had his first surgery at 9mo old and we had to stay in the hospital for almost a week to get his blood sugar stabilized. Just wanted to say hi and "introduce" myself and let you know I'm here if you ever need to chat with someone who gets it or if I can help you in this process at all. It's hard and scary and confusing and exhausting and having an extra set of ears to listen and run stuff by was really helpful for me so just wanted to offer that up! Hope all is well!"

"First off I want to start by telling you that your blog is AMAZING!!  You have truly inspired me in so many ways.  Your honest outlook is so refreshing!  I wish I had good information for you that would help lead you to the answers you need, but my daughter's story is different from Toby's story. I feel for you and the pain you feel for your little one.  We also visit the doctor very frequently.  I think and pray for you often as I know that the fear of the unknown is the worst part.  I always felt like if I have the answers I can deal, but just give me the answers!  I hope that you get the answers you so desperately want.  From reading your blog you seem to be such a wonderful mother.  Your strength is incredible as I can't imagine how hard your days must be.  Like I said I know our stories are not the same, but I empathize with how you feel. 

I will continue to pray for Toby and your family.   I look forward to your blog posts as they provide me much strength on the hard days.  Toby sounds like such a wonderful and brave little guy.  It sounds like you got a special blessing from God as well.

PS - I had a nurse at the hospital give me this poem about kids with 'special needs.' At first I was taken back as I didn't feel my child had 'special needs', but then I realized that special needs can mean so many things.  Many of which may go away and many that stay with a child forever, but regardless it helped me to appreciate everything about her and my son too.  I still get this out from day to day to help me through. "

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Ok guys.  Can you even believe it.  This is just a sample of the many notes and comments that have been sent my way.  All of them empowering me more and more to stay positive.  Celiac Disease is a good thing!!  We can handle this!!  I  keep praying that this is all it is, and we have a while until we are sure, but with your help, my worry is being overshadowed by my joy.  The pure joy of loving life any way you are dealt it.

Thank you all, so very much.  And thank you for listening. 

Lindsey