Wednesday, July 20, 2011

Emotions

There are so many emotions involved when one of you children is ill.  Seeing what I've seen Sophie go through in the last few weeks has really taken a toll on me emotionally.  Diabetes has already forced me to dig deep and find strength inside of me that I never knew that I had --- I wonder --- is there any left?

Sophie's diagnosis came less than a year after Nate's so I'm pretty sure I was still numb so I was not able to feel the emotions from another diagnosis.  I'm feeling them now.  Just like before I find it quite easy to put on a smile for my sweet girl but give me one stolen moment alone and I am a bawling mess.

The good news is I've been here before and I know I will find my way out.  It's dark but there is always light at the end of the tunnel and I'm pretty good at seeking it out.

As I sit here in the hospital with my daughter it has become clear how amazingly ok I am with Nate's type 1 diabetes.  Don't get me wrong, it took a long time to get here but here I am. Somewhere along the way I accepted the fact that Nate has type 1 and he IS going to be ok.  More than ok --- he is going to be amazing.  I think reading Phil Southerland's book, Not Dead Yet really helped me realize that there is so much Nate can accomplish despite having diabetes.  Yes, he may have to work a little harder, dig a little deeper and bolus a little more but I know he can and will.  In my eyes it has already made him so much stronger than any other 3 year old I know.  Just think how awesome he is going to be at 10, 16, 21 and so on.

I struggle with Sophie's dx a little more I think because of diabetes.  Let me explain.  Although diabetes can be a bitch!  I mean BI-ATCH!  I know that I can work my ass off and keep Nate in good health --- I'm not saying we don't have bad days, highs, lows or all the struggles that come along with T1 but after almost 2 years I feel like I have come to terms with the diagnosis and know that we will all be ok.  I'm guessing that right now Sophie's diagnosis is so hard because we are right in the middle of the trenches fighting as hard as we can to get her better.  The hardest part is there is NOTHING THAT I CAN DO. 

NOT ONE THING.

Her disease cannot be controlled by me.  As hard as I fight for her health her disease has a mind of it's own.  I know we preach that insulin is not a cure for T1 but we can work hard, not sleep, count carbs, weigh food and keep these kids as healthy as possible with all of our hard work and it just doesn't work that way for Sophie.  It makes me so mad!!!  And sad!!! And I think I'll go beat the hell out of a pillow now.

I truly hope this post doesn't offend anyone.  Please know that I know as well as anyone how hard T1 is and would never, ever want to make it seem easy.  It's not.  Period.  It's just that I feel like I (occasionally) can control Nate's health with all of the hard work we put into his D care.  Sadly, there is nothing I can do for my sweet Sophie to keep her healthy and strong and that makes me MAD AS HELL!

Okay --- going to beat pillow NOW.




25 comments:

Lora said...

I get it. Were not handcuffed to watch them suffer. We can treat a low or correct a high.

You are one strong mama, thats for sure, but I hope things ease up on you guys.

(((IMMA SENDING HUGS))) lol

Alexis Nicole said...

I am crying reading this. You are right. No offense taken.

As much as I HATE the lows and the highs and the inbetweens we can treat or correct them.

I pray the doctors find answers and can help Sweet Sophie feel like herself again.

Remember that text a few months back?
CUCKING FOHNS!

Here when and if you need me. Love you!!! (((((Hugs))))

Sarah said...

Laura-I am in no way saying this is a solution, but did you get my message on FB about my good friend from college's experience with crohns? I think like d with time you'll find ways to better manage it, but you're right at this moment in the midst of it all while you're fighting at the beginning in the trenches it's hard. I'm thinking about you guys and your sweet kiddos, knowing that things will get better...they just have to, right?
Take care :)

Meri said...

Exactly. With diabetes we can act. With sweet Sophie I know you have to feel so helpless. Nothing that you can DO. And as mothers we want to do!

Love you!

Rachael said...

My thoughts and payers are with your so sweet family. I'm not a mom, but I can only start to imagine what you are going through. You are so brave! Hang on there and know there are people thinking about you! Wish I could do more! <3 you!

Anonymous said...

What an awesome thing you do for yourself, your kids, all of your friends, strangers, etc... This is so helpful to all listed and I'm sure a great outlet for you and your sanity/well-being! I can relate to your perspective on nate's medical "hiccups" and your newly found ease with that. I am in 100% agreement with your idea of a positive in everything! That is so powerful and is what gives you and therefor, your strong kiddos the strength and will you all have! In a way, you can say 1positive from Sophie is your new outlook on Nate! That is so powerful and a great perspective that mothers across the board understand to some degree I think. Motherhood will bring out strengths you never imagined and you are such a gift to sharing your new strengths & new outlooks with us all! What a great teacher you are with your open & honest look into your emotions, feelings, thoughts, etc you share so openly! I can only imagine how many you've helped with similar experiences and no confidence in the "positive" hidden under all the "negative" aspects.

Reyna said...

Aw Laura. Funny how I came to the same realization after Joe's near cranial vascular lesion diagnosis. My perspective shifted. I became grateful for what I could control and that was huge. You, my friend, could never offend any of us. Love you and thinking of you and Sweet Sophie today.

Penny said...

Offensive? Never? Caring like only a mother can? Absolutely. You are a wonderful Mama to both. And this post touched a nerve, cause there is nothing I can do for Maddie's autism after a while. She will always be autistic. And yes, iknow G will always have diabetes, but it's different.

Jaclyn Smith said...

I haven't stopped thinking about you guys, pray for you often and totally get what you are saying. You are awesome, never forget that, and I don't have to tell you that you will make it through to the other side. Easy to say that when you are outside the tornado looking in, right? Sending prayers and love your way.

Shannon Davis said...

Laura- You are so right about it all. AS tough as it is and as hard as it is we have treaments and the ability to work on the D Monster. I am so sorry you are suffering this way with Sophie. I wish I could make a wish and all of it would go away. remember I am here if you need me! Big hugs. -PS Jackson and Joshua wanted to know if they could video chat with Super Nate...

Tracy1918 said...

You are amazing, Laura. I'm sorry you're having to go through this. But I am so grateful that Sophie has you. I know it might feel like you aren't doing anything for her, but when you see that smile on her face it is clear that she has a mom taking excellent care of her! Wish I could give you a big hug ......

Becky V said...

We never have to like the diseases that afflict our loved ones. The most important thing is to keep going on. And you Laura are showing all of your children how to do just that - take what you are handed and keep on living life. That said, I find it is OK to cry with my kids when times are hard - when it really sucks and they are crying - it is OK to be sad about it. And then, you just keep going. Praying for a cure for UC, Crohn's and D.

Denise said...

It sucks to feel helpless but you are hardly just sitting by watching her suffer. You are a great momma and you are giving her all the love and support to get through this and doing all you can to find solutions. Thinking and praying for you and sweet Sophie. Big hugs to you guys!!

Hallie said...

Oh Laura... HUGS. I get it. No offense taken at all. T1 sucks. It does. But it's not the same as UC or other things like it... It's just not. Loss of control is frightening. It scares the HELL out of me. So I can only imagine what it's like. You go hit that pillow. Cry an ocean of tears. Do what you need to do. (Just say to yourself, "Imma gonna go dodat right now!") But always remember that you are not alone. There is a light in the pit - even if it's really small. And I'll always be there, day or night, with an outstretched hand to pull you up when you need it. LOVE YOU! DNQ!

FeltFinland said...

Just be catching up on Sophie - really hope she is feeling better. Big hugs to you all. Amanda

Denise aka 'Mom of Bean' said...

So true...there's so much we can DO with T1 to actually help and manage it. With Crohn's, not so much. It's heart wrenching to see someone we love go through something when we can only offer support and love, instead of being able to DO something.
HUGS!!

lukesdday said...

You're right about T1 at least being somewhat controllable - there are much harder conditions to deal with. So sorry you all have a tough one on your hands, and hoping for the best!

Diapeepees said...

Thanks for that perspective. I totally understand about having a least the semblance of control with diabetes vs. your daughter's struggles..

Amy said...

Thank you for coming here to your personal space and gettign it all out, knowing people might not understand. The dichotomy between the two diseases must be frustrating. Has to be head-banging-on-the-wall, punching and screaming into a pillow madning! But the thing is, God chose you to be Nate and Sophie's Mama because He gave you the strength knowing you would tap into it and run the race . . . sprinting at times and at others buckling down for the ultra-marathon. He chose you because He believes in you. We believe in you. We love you!!!!!!!

NikDuck said...

Oh Laura, I get it and no offense taken at all. I actually thought the same thing as I read through all your updates on your little girl. There is nothing you can do like with diabetes we do have some "control". Thinking of you today and praying you find your way out of this dark tunnel. Take all the time you need to grieve. There are so many people rooting for you and Sophie. This disease needs a cure too that is for sure!

Heather said...

I can't even imagine. No offense taken here, at all! Hold your head high, you are a great mommy. There are so many people supporting you. Love you lots, girl!

Nikki of Our Diabetic Warrior said...

No need to apologize! I'm going through the grieving process myself (with my son's diabetes and celiac). I find my hope, guidance and comfort from the Lord. When I can't do it on my own, He carries me. My prayer is that you can find strength through Him too. Sending HUGS!!!!

Electronic Medical Records said...

It is very ill affecting on the mind to know that your child is unwell and the level of ill health becomes depressive when it is something serious.But believe me there are many like you who are braving it out for years now.

sfincham said...

Laura, don't apologize for your statements. I think what you are going through is probably one of the toughest things any parent has to endure. There are so many D-mama's in our own circle that have multiple diagnosis of Type 1 and we all just "awe" in the strength they show us each and every day. The fear of a second diagnosis (of anything) always looms over those of us with more than one child. The BG test on the sibling just "to be sure" stuff that is talked about with shame by a lot of us moms of Type 1's. Then the stories from those who are trying to make us feel better after diagnosis, you know the ones. My favorite one told to me was my aunt who told me of a woman whose daughter had some hideous accumulation of ailments that required her to get up every night and beat on her child’s chest to keep the muscles from freezing up and suffocating her. This of course was suppose to make me feel better…told to me like I should just buck up and grin that this insulin thing is easy if you think about it. I've written before about my step-daughter who has survived cancer and how I would never compare cancer and diabetes in the first place, but when you do...if survived and IF it doesn't return...well my step-daughter has the same guarantees of waking tomorrow morning as you or I, my Type 1 daughter doesn't. Apples or oranges, they are all fruits whether you peal it or eat it whole. Nate at this moment isn't suffering, so your mind makes you go to that place of guilt. Of thinking you've taken something for granted after Nate's diagnosis, that Sophie is in so much pain, that you can't just get the equipment and work the formulas and walk away from the hospital, give up a little bit of your life and move forward. That not sleeping, having a juice box in reach at all times, is so damn easy now. That Sophie is that kid, that story someone told you about how much worse it could be. Of course it's worse...it's another reminder of how fragile life is, of how all of us take health for granted, even after a diagnosis. Your life course was turned with Nate’s diagnosis, and now it has turned again. But you've had practice now...you know it's not hopeless, you know to panic will not help. You've simplified and cleansed to handle Nate's Type 1, now you will continue to simplify and cleanse further to take care of Sophie. The anger keeps you alert, I used anger to get through the first year of Ellie's diagnosis, and without it I would have been a pathetic mess of sorry. Use your anger to get through this next challenge…this next source of scary, this horrible life challenge. I wish and hope for you and your family every day. Keep sharing your feelings and the events, I think you know that we are all here for you and we absolutely understand your feelings...and what we don't understand Laura, you will teach us. We love you, chin up and forward you are an amazing mom and person! DO NOT EVER FORGET THAT! XXXOOO

Natalie Hodge said...

Hi I'm a new dmom of 11 year old kennedy, we are three weeks in, I am a mess, but trying to keep it going. I am also a pediatrician, and an obsessive one for perfection in the way that I take care of all of my patients, so I am in for big trouble with this unpredictable disease. Thanks for writing, I have gone so far as called up all the artificial pancreas researchers in Santa Barbara and am inquiring about integrating med device data with my EMR so I can remotely monitor my daughter's blood sugars from afar. ( It sounds crazy, but I've already called up my software developer and spoken with Omnipod CEO about an integration.)

I see you are an omnipod dexcom fan, we are leaning that way as well. What are your top 5 tips for the week you go on omnipod?