Monday, August 17, 2009

Yes, But I'd Be Lying

**Disclaimer this is a venting/sad/emotional Shamae post. Read at your own risk. If you do choose to read. Feel free to click play on this song below and carry on.**


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Sydney starts kindergarten a week from today. This post may sound like a bit of a downer but don't get me wrong, I am so excited for Syd to be starting school and, most importantly, she is so excited. But...there's always a but...I am scared. I'd be lying if I told you otherwise. Unless you've lived the life I suppose it's difficult to comprehend what it means to take care of a child who has Type 1 Diabetes. It is daunting and grueling and tiresome, and frustrating, and scary, etc etc. I've had lots of folks ask how I'm dealing with this and, usually, it's the same generic answer--mostly because it's hard to tell if people REALLY want to know how you're feeling or if they are just making small talk and don't give a rat's rear end how you are feeling--I usually answer with, "Oh I'm nervous, what mom isn't nervous to send their 5 year old off to the big world of kindergarten? But we will be just fine." This is the rest of the story...

Yes I may say that, but it's a lie. I've mentioned before that writing on my blog is rather therapeutic for me so consider this a therapy session. I called Sydney's school back in March to make arrangements to go over her 504 plan. I wanted to give them a heads up that Sydney would be attending school this fall and that she has some special requirements with her Type 1 Diabetes. The school was nice...always friendly. They also always give me the same answer, "We will call you to set up the meeting." Well it's a week before school starts and I've still gotten the run around. I finally called today and was quite firm that I can't send Syd to school until we have a 504 meeting. It is supposed to be set up for the end of the week where they will get a crash course in diabetes management and, on so many levels, I'm scared. My blog is a great place for me to show my feelings and so here goes...

I'm scared to send Syd to school. I've been slaving over basal rates and boluses. Carb counts and finger checks. Pump changes. Insulin changes. Night time checks. Prescription orders. Doctor visits. Documenting all her blood sugars and carb counts. And, after all my efforts, I still feel like I'm fighting a losing battle. I have studied and read about Sydney's disease. I am proficient in how it works and, in theory, what I need to do to keep her healthy...and I still feel like I'm failing. Sometimes it hits me, like a brick in the face, that this is our reality and her diabetes isn't going away. Those days are rough. With the impending doom of kindergarten approaching, those days are happening more and more. Why can't I just be able to send her to school without worrying about her going low or high. Passing out. Seizures. Recess. PE. Snacks. It's so much to think about it makes my brain feel like it's melting. I'm tired.


And now, after all of this, after all my efforts and tears, I am supposed to send her off to school. To people who barely know about this disease. I can't manage it well-- and I am supposed to trust THEM to do it? I'd be lying if I said I was comfortable with this scenario. Of course then my shoulder angel says, "yes but so many kids are going to school every day and managing." Then my shoulder devil takes over again. I don't want to let go. I've been the one who has learned it all because I love Syd more than anyone. Despite my best efforts, I can't control this disease and now I am supposed to trust these people who barely know her and obviously don't care enough about her to set up a meeting on how to care for her? I am supposed to, quite literally, put her life in their hands? I'd be lying if I said this thought doesn't terrify me.

Sometimes this disease is so overwhelming. I feel like I'm drowning. The waves are crashing higher and higher and I can't see the end to the storm. Of course then I have dear friends/family who throw me a life vest and it keeps me floating a while longer--helping me get through just one more of life's storms. The problem with the diabetes storm is, while it does calm down after a while, it never goes away and right now I feel very inadequate to be raising a Type 1 child. I can't swim; therefore, I am inadequate to be dealing with Type 1 Diabetes at all, let alone in school.

The logical part of me knows that we will get through this and the unknown is generally scarier than the actual event. We will be just fine. I just needed to vent, cry, blow off steam. So, that's it for now. Therapy session over. Don't worry, upbeat Shamae will be back tomorrow.

17 comments:

Wendy said...

Be a tiger.

I will start praying for you guys immediately. You can do this...it feels like you can't, but you'll surprise yourself!!!!! And, in the end, Sydney will win...because you WILL NOT let her lose.

I'll be out here in cyber land doing anything I can to help you win this race.

Furniss Family said...

I know it's hard enough to send you kids to school, let alone if they need some special requirements. How frustrating!!! She is a cute, smart little gal and I'm sure she will love school though :)

Meri said...

I am struggling over what to write. All I can think is, I am in the same place right now. I also know that what you have written strikes a chord in all of us Diabetic Mommys in Blogland.

I'm listening. I understand.

We'll make it through!!

Sending love and good thoughts your way!

Rachel said...

I've been there. When Tristan started pre-k 2 years ago, I thought I was going to go crazy worrying. Honestly, everything turned out perfectly fine. We've had 1 incident of really low blood sugar in 2 years.

It's frustrating that the school is giving your the run around. Keep at them, you are in charge. Not them. What I do every year is not only have the 504 meeting with the school administrator but I also have a private meeting with his teacher before orientation day. That way, I get the teacher to myself and I get to explain what to look for in Tristan and what the requirements are. What they can and can not do. Have you meet the school nurse yet? I would suggest that you do this as soon as possible, this will help "knock down" some of those fears.

Try and stay positive. Sydney will be fine. She will love going to school and hopefully, the people watching her will take good care of her.

You know where to find me if you need to talk/vent. I've been there, I completely understand.

Mel said...

HUGS MAMA!!!! I wish Syd the best at school and hopefully you'll be less stressed as the weeks go on and she does well.

KLTTX said...

Shamae - I just wanted to let you know that I am thinking about you. I hope that the school finally gets their act together for the meeting. Do you know if any other kids at the school have diabetes? I assume they are at least somewhat familiar with the disease from other students. Is there a nurse on staff that you should talk to as well.

sarefamily said...

Shammy- you have always been the mamma hen, long before you were an actual mom. You are great at it. It really is your calling and you go above and beyond in everything that you do. Syd will be fine because she has you. She is such a smart girl and handles her diabetes so well. She knows when she is low and can check things on her own. I think that in school she will do great because you have taught her so much about her disease. I love you and wish I was closer!!!!! I truely can't believe that you have a kid old enough for school. It blows my mind!!!!!

Erin said...

You amaze me. In every good way that word can be conveyed. You are talented, smart, strong, & it's obvious you love your daughter to the moon and back. Remember, all the medical experts know what they know (or in this case, they might not know) but YOU are her mother & you know her the best. Trust your instincts & follow them, the Lord gave them to you for a reason. Don't those guys at school off the hook, push them to be as good as you baby.

Stringham Family said...

Shamae-
I don't even know what to say. I'm in tears thinking of the struggles that you as a mom have to go through. Every mom has struggles and worries about their children, but you have so many more to worry about. I don't even begin to comprehend what you are going through. I can't imagine the feelings that you have. What a hard thing to go through. If there is one thing I do know about you though, you are so strong and so amazing. If anyone in the world can find a way to deal with this, it's you. My prayers and my thoughts are with you and Syd every day. I wish so much that there was more I could do or say to comfort you, and make it all better. I wish more than anything in this world that there was a cure for this terrible disease. I can't tell you how much I hope for a cure for Syd. She is a sweet little girl. She has so much faith and hope and you and Loren have done an amazing job raising her thus far and teaching her about this disease. I think because of that she will be ok, but that doesn't stop the worries. Hang in there! You are strong, and wonderful! If there is anything I can do to help, please call or email me. I would love to help! We all get down, so don't ever think that you always have to be upbeat and positive. It's ok to cry and show your weaknesses. I love you and Syd!

J.R. and Michelle said...

All I can do is cry with you, (which I am by the way), pray for you, and call your names into the temple. If I knew the email address of any member of the staff of Syd's school I would forward your blog address to them. There is no way they could read that post without feeling connected to you, and Syd both. It would make them care. Sometimes people just need to be reminded to slow down and see the person, and not the # on the roll call.

Nicole said...

WOW, I'm so there with you!! I'm so sorry that I don't have anything comforting to say to you at this moment because I'm so there with you. I have not even started to deal with all my fears and anxiety about Cara starting school in September. Thanks for sharing, it is so helpful to see that others are going through all the same feelings and emotions. I'm glade to have shared this therapy session with you!

Becki said...

I'm so sorry Shamae. I can imagine that I would feel the same way. I will pray that everything goes smoothly for you guys!

The Lane Family said...

Shamae,

First off I think the pictures are amazing of Miss Syndey, she is such a beautiful strong. little girl and I am sure that she is and will be an inspiration to so many people.

Second, I do not know what you are going through but I do know that as a mom we do not like our kids to be sick or to be "different" than other kids. We thought them to be happy and to be able to learn and grow and enjoy what life has to offer without the struggles of a disease or condition. I know you do not believe you are doing a great job but from what I see in the blog with pictures and the many adventures you have I think you are doing well and taking every step you can to allow Sydney to have as "normal' of a life as she can.

I know this will be hard to watch Sydney go off to school and you worry about how things are going and how her sugars are going.Especially when they seem to not take you serious when you call. We will keep you in our thoughts and prayers and trust things will go okay.

Crystal S. said...

I swear you know exactly what I am thinking, and exactly what I have been dealing with this last month, and Brenner hasn't even started school. Luckily I have two more weeks to prepare myself, which probably wont happen (ha, ha).

Like Nicole said, thanks for sharing, it is so helpful to see that others are going through all the same feelings and emotions.

I too am glad to have shared this therapy session with you! I'm thinking of you!

wendys said...

I can't say I fully understand everything you are going through, because I don't have a kid with type 1. I understand the worry about somebody not taking good care of your kids in your place. Don't take this the wrong way, but have you considered homeschooling or the Idaho online school for a few years. It might dissapoint Sydney but it would relieve some of your fears.

I remember in third grade there was a boy with Type 1 in my class. I was really jealous that he got snacks during the day and I didn't!

Krystal said...

I love you and Syd so much. Syd is strong, just like her mom...Everything is going to be okay, I pinkie promise!

Rissy said...

Shamae, I just have to say that even though you feel like you're inadequate at dealing with this disease, I'm completely impressed with how well you manage the entire process. I work with a lot of diabetic patients and it seems that the families really haven't done much for them in helping them learn and deal and manage. You do SO MUCH for Sydney and she's one tough little girl! She's lucky to have such a great mom who is always doing her best to make sure her sugars are being managed. It's tough! We wish you all the best with Sydney starting school. Good luck! She will do great!