Thursday, February 25, 2010

2 years ago...

--2 years ago today our life got divided into "before diagnosis" and "after diagnosis."

--As much as we try not to let her diagnosis define us, to some degree, it does.

--2 years ago our life spiralled in a new direction...one we didn't plan on.

--2 years ago we got a crash course in Type 1 Diabetes management. After 4 days we were sent home to care for and, most importantly, keep Sydney alive. It was more terrifying than when we took Morgan home from the NICU.

--2 years ago today I wanted to open a can on the nurse who, upon being admitted, asked if Syd were an organ donor in the event she passed away.

--I realize it's protocol but when the mom is sobbing and the kid doesn't know what's going on yet and the father has yet to show up at the hospital COME BACK LATER...ya not ok. Use tact.
--2 years ago Sydney, literally, was dying. Literally, in every sense of that word. W/out treatment and intervention, she would have died. Not that day or the next. But, her doctors said, w/in the next 2 or 3 months she would have been gone. That's not me being dramatic--I am not a dramatic person to begin with--that's me telling it like it is.

--2 years ago Syd's doctor was reassuring us we did nothing wrong to cause this auto immune disease.

--2 years ago I didn't believe him.

--Today, I do believe him but it doesn't always take away some form of guilt.

Any diagnosis will resonate in our minds forever. Certain events make an imprint that can't be erased. I'll show you what I mean. I'm going to type a word and you will remember things about the event. "First Kiss." "9/11." "First job."

See what I mean? So, when you find out your child has a disease that can't be cured. One that could claim her life along with a host of ugly complications--you're going to remember that day.

To read my blog post from when she was diagnosed, click HERE. I periodically go back and read this post. I still remember it so vividly--some things fade over time--but I remember most of it. I remember how naive and unfamiliar I was from being blindsided with Type 1 Diabetes. Back in September I did a "random thoughts" post about her diagnosis and more details I remembered. It's HERE.

I can't believe it's been 2 years. I can't believe how many shots and pokes she has had during this time. The other night I was laying in bed and I realized that Syd tests her blood sugar, on average, 300 times a month--and every one of those pokes result in a blood sugar number that Loren and I have to analyze. Her fingers get poked and bleed 300 times per month. Every month. Forever. It was a little slap in the face to realize--or re-realize--this.

For a brief time our world stopped. And when it began again, we were headed in a new direction. We were landing in Holland. I realize most of this commentary is me walking through my thoughts. Thinking "out loud." It's such a big day for those of us who deal with this or any disease.

Maybe some of you are reading this and don't understand why I'm making a big hoopla out of it...why it's an emotional day for me...and that's ok. I pray you always will wonder and will never have to know a day of diagnosis. The day that will forever remind you of "before" and "after." With that said, enjoy the pics.

~These were the last pictures taken of Sydney before dx. These were the day before we got the news. It was Grandma Linda's birthday party. I knew something was up with her. I knew she had an appt the next morning. I thought she was getting sick with something. It really bothers me looking at these pics and realizing what she had for dinner with no insulin in her. Sloppy Joe. Mandarin Orange Jello Salad. Chips. Regular Soda. Cake. Ice Cream. What did her blood sugars do that night?


~This pic was a little while after dinner and cake. She looked off. She probably felt terrible inside. But we didn't know the storm that was going on in her little body. The next morning I almost cancelled her appt. I thought her doctor was going to think I was crazy that I was concerned because my daughter liked to drink alot of water. But that night she woke up 3 times to go to the bathroom. Maybe it was just a bladder infection? It would get treated. She would get better.


~But that's not quite how it happened. She got dx with Type 1. We were sent directly to the hospital. We learned how to keep her alive. We learned how to hold down a screaming 4 year old and give her a shot. We learned how to tell her, while tears ran down her face, "No, your blood sugar is too high for a carb snack, but how about some cheese?" I wouldn't do her shots til closer to the end of our stay. I remember the nurse telling me it was time I do them. I remember the first time I tried. Loren was holding Syd down. She was screaming, "please mommy don't. Please don't hurt me mommy. Please, I don't want a shot mommy." I stood for a couple minutes, crying. I was using a needle to pierce her skin. It took every ounce of courage I could muster to give her that first shot while she screamed. It was hard. Very hard. But, just like brushing your teeth, pretty soon the shots became second nature for all of us. (When I compare it to brushing your teeth, I mean in habit--not simplicity. There isn't much that is simple in T1.) We did learn something quite valuable...

I realized a couple months after her dx how lucky we are to have a disease that has a treatment plan. There was a time, not too long ago, where Type 1 was a death sentence. There was a time where I would, today, be visiting the headstone of my daughter who passed away shortly after dx because there was no treatment. We are very blessed in that regard. Now, we just gotta find that cure! :-)


~She was a pretty happy little girl in the hospital if we weren't giving her a shot. We had non stop visitors and realized how loved we were. Syd got gifts and activities to keep her busy while mom and dad were in information overload.


~My sweet little girl at the hospital. She is brave. She is strong. She is a little hero.


And so, on this day 2 years ago, we landed. Our flight attendant said, "please unbuckle your seatbelt and, Welcome to Holland"...

By Emily Perl Kingsley

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.

22 comments:

Wendy said...

I just love you and this post in amazing! Way to go brave Sydney (and brave mommy)! 2 years!! Bitter sweet..Remember how amazing you and your whole family are Shamae. Remember how many women and children the both of you have helped in SO many ways. Remember that your words have touched so many lives. Big fat hugs to you and especially to Sydney today! Enjoy your day knowing that you have not let diabetes win!!! I could write so much more but id rather say it to your sweet face on Friday. HAVE AN AMAZING FUN FILLED DAY!!!!! xoxo

Tracy said...

Congrats on 2 years! Happy and healthy!

(((HUGS))) to you and your family today!

Jennifer said...

Wow! What a wonderful post. The thing about Italy and Holland is just beautiful and spot on. I am almost in tears! Thanks for this post. I am so lucky to "know" you!

Meri said...

SO I just blubbered for an hour as I wrote a post on my blog. I composed myself and thought..."I'm glad to get the crying out of the way...now to start my day! But I better catch up on my friends blogs before I shower."

Sheesh! Turn on the water works again! What a post Shamae. I feel every emotion in your words. I can't imagine holding her down and giving her a shot. Your courage is heroic.

(((HUGS))) on this day. I am blessed to know you, and fight this battle by your side. Celebrate Syd's life today! And maybe punch a pillow imagining it is that nurses face that asked you about being a donor. (PUNCH IT HARD)

Amy said...

Happy 2 year Syd and Shamae!!! Where has the time gone??

Beautiful post...had me crying my eyes out!!! Our 2 year is next month- I always forget that our girls were DX so close together!

Lora said...

I go back and read my "story" from time to time too. Not sure why because I always cry about it.

You are a great mom. Sydney is lucky to have you. And so are we. Even though I WISH we could have all "met" in Italy...the "trip to Holland" wouldn't be the same without you guys.

Anonymous said...

It's interesting that you are now using the 'Welcome to Holland' story. I have used that for years in my work with disability, never knowing it would be used one day by my daughter.

I'm proud of you, Loren and Sydney. And not to leave out Morgan...she is a very good sister!
Love,
Mom

Donna said...

The Italy / Holland story is just perfect! My husband and I often talk about how what is normal for our family is not normal for a "normal" family. LOL We experienced it first when we had twins.... we questioned why everything had to be so hard... we had to do EVERYTHING two times. We didnt get to experience like other parents what it was like to only have one baby, and we felt the loss of that - it was very overwhelming! The Jacob was dx'd and we thought - "can we just go back to just having twins - that was EASY!!"
Happy Anniversary to you and Sydney - and congratulations on your biggest accomplishment which is keeping her healthy and happy! =)

Jenni said...

I hope YOU realize that this disease that is raging inside of your sweet baby girl is being taken care of by YOU! YOU are simply amazing Shamae! I have known many people with this disease....and not a single one has put forth as much effort and courage as you have for your daughter!!!! Don't ever forget that! She will grow strong and healthy because of YOU! I love you both and am so proud of your guys for all you have done....not only for Syd, but for the world in educating this disease. YOU are simply amazing to me!!!!

PS--I would be honored to do photos for you again! :)

phonelady said...

Happy anniversary syd and shamae !! that is a milestone . I remember the two yr anniversary of my sons dx and boy did that sure feel good it was like okay we made it this far we can do it no matter what !!that is such a good feeling !!!

Wendy said...

Holland is a beautiful place.

I'm so happy to know beautiful people like you to explore it with.

2 years...it seems like so long...yet just yesterday at the same time.

I'm so very proud of you. And so incredibly honored to know you.

Hugs to you 2day!!!!

The Lane Family said...

Once again I have to say that you are an amazing family with two amazing little girls and one who is truly amazing for how she is dealing with a life changing disease.

Thank you again for the poem about Holland..because for me I have learned that Holland is a nice place too, different but oh so beautiful!!!

Heidi / Jack's Pack said...

I love how you made the analogy to "first kiss," "9/11" and "first job." It's so true how our individual diagnosis days will be forever etched in our minds.

Every day, I feel so very grateful that diabetes is no longer a death sentence! I have to believe that we WILL find that cure!!!

Reyna said...

Shamae,

Good to "meet" you too! This was a beautiful post. I cannot even imagine having to hold Joe down to give injections etc. That would've done me in...as if everything wasn't hard enough at diagnosis. I remember the "how about a meat and cheese roll-up?" offerings for snack while he was on shots - ugh...that is when Joe would get pissed. Trying to negotiate food with a stubborn 3 yr old was NOT fun.

The Italy/Holland story is a beautiful fit and I LOVE it used in telling our story.

Jessie Phillips said...

Holland? We are in HOLLAND?!?!WHAT THE HELL!?! I THOUGHT THIS WAS HAWAII!?!?! haha just kidding. Hey, so is it wierd for me to say I am sorta glad Syd has this disease? I don't mean I'm happy she gets shots, and has to endure crazy sleepless nights, and not being able to eat or do what everyone else does, but because she has helped inspire me. Because through this YOU have inspired me, and I know I am supposed to be your bff because Syd has this. I mean I don't have a kid with Diabetes, but it's like I just know you need me ALMOST as much as I need you! I just know that when we were in heaven and we were friends there too,and we knew what our life would hold, that I looked at you and held your hand (when you were about to come to earth, cuz you are of course OLDER than me :)and gave you a hug and said...Shamae YOU CAN DO THIS! I'll be there after it happens and it will be ok! Wow that was alot of blabbing and going off, but anyway....I LOVE YA! I LOVE SYD! I won't say HAPPY ANNIVERSARY or anything, but just know the rest of your life I'll be there to support and help you however I can.

Jessie

Jessie Phillips said...

Holland? We are in HOLLAND?!?!WHAT THE HELL!?! I THOUGHT THIS WAS HAWAII!?!?! haha just kidding. Hey, so is it wierd for me to say I am sorta glad Syd has this disease? I don't mean I'm happy she gets shots, and has to endure crazy sleepless nights, and not being able to eat or do what everyone else does, but because she has helped inspire me. Because through this YOU have inspired me, and I know I am supposed to be your bff because Syd has this. I mean I don't have a kid with Diabetes, but it's like I just know you need me ALMOST as much as I need you! I just know that when we were in heaven and we were friends there too,and we knew what our life would hold, that I looked at you and held your hand (when you were about to come to earth, cuz you are of course OLDER than me :)and gave you a hug and said...Shamae YOU CAN DO THIS! I'll be there after it happens and it will be ok! Wow that was alot of blabbing and going off, but anyway....I LOVE YA! I LOVE SYD! I won't say HAPPY ANNIVERSARY or anything, but just know the rest of your life I'll be there to support and help you however I can.

Jessie

Hallie said...

So I read this at school and was totally crying my eyes out!

Great post. I can relate to so much. That emotion is so raw. I hated the holding her down part too. The crying for you stop. Finding the strength you didnt know you had.... THAT DAY is something we won't ever forget and will hurt every time we think of it. I'm just hoping that one day it will start hurting less.

Congrats to you on 2 wonderful, difficult, healthy, courageous, strong, loving, sad and happy years! I'm so glad to have met you and to be able to share this journey with you!

love and hugs!

Jessica said...

Oh, Shamae. What a great post. Thank you so much for doing what you do here and sharing this.
You are an amazing, strong woman and mother.
HUGS, and congrats on the two years!

Priscilla said...

Amazing. Knowing how you feel about needles, I can't imagine you on that day. But as you said, it gets easier.

You guys are tough. And a great example. Here's to many more years!

Jessica said...

You have a way with words Shamae! I love the little excerpt at the end....it can go for anything....

Misty said...

Shamae, I am just getting to "know" you, but after reading this post (and after wiping away my tears) I felt like we were long time friends. My daughter Ally just had her 1 yr anniversary on February 10th and I felt like you were writing the thoughts right out of my head! I enjoyed reading it:)

LauraBro said...

thank you for this post. Two years I bet has seemed like an eternity- I admire you mama for learning so much about your child's disease (is it okay with you to call it that?!)- a lot of parents don't go to all the work to make sure their child is as good as possible. I know a family whose son got diagnosed with Celiac Disease (like my David) and they just ignore it saying they can't afford to eat gluten free and their son is having seizures and BIG problems. I cried at the holland analogy- I may use it on my blog--it really is a mourn to lose good health and normal life- but I'm grateful that it keeps me remembering what's most important and it also gives me the opportunity to REALLY serve my children as I work hard at helping them stay well. thanks for your post!