Embracing Life & the Child with the Disease

Here Comes the Anxiety

I usually write about little stories that happen to us or about D or updates on appointments or accomplishment or mile-markers.  I always try to stay positive.  I know there are multiple hardships with the disease and I try to keep myself focused on how life is still good, because it is.  But I’m just going to share my thoughts/questions with my d-moms or those of you T1ers who live it.  I am a very anxious momma today and must thow something out there. 

In three days, we will hit 8 months living with D and it’s time we start thinking about an insulin pump for Ryan. October 21st is D-day . . . or actually, it’s P-day (Pump day).   I have pushed and pushed and been so aggravated at the process of getting him on a pump, and now that we are almost there, I’m anxious.  And I’m not anxious about the learning curve (okay maybe a little) . . . and I know there will be one.  I’m not anxious about which one to choose . . . and I know an important decision is to be made in which I have conflicting opinions.  It’s about him wearing something on his body that will be a reminder when I see it that he has a disease. 

I hope my d-moms don’t take offense to that last statement.  I am NOT ashamed that Ryan has diabetes.  We don’t go to the restroom in a restaurant and take his sugar and give him a shot before meals.  We don’t go over in a corner and discreetly take care of his insulin when we are at a church dinner.  We don’t excuse ourselves sneak off to another room when we have company at our home when it’s time to have a meal together.  We politely just do business as if it’s totally normal right at the table, right where we are seated . . . because it IS normal for us.  I have even been known to leave used test strips sitting on a table while we eat at a restaurant and not even realize I’d done that until the meal was over;  I’m pretty sure you won’t find that in any manual on proper dining etiquette or even sanitary eating practice.  So it’s not a matter of being ashamed or trying to hide the life we live or that Ryan has a disease.

It’s that device that will sit in a pouch at his waist and be connected to a site on his belly or the pod that will be affixed to the back of his arm (still undecided on which pump) that I fear . . . yes, I did say FEAR.  Every step we have made in this 8 month process whether it be good or bad, easy or hard, has sent this momma into an emotional gushing or tailspin.  And there is something about that visual that gives me a sick feeling in my stomach. 

For example, I can be at Kohl’s in shoppers euphoria at the deals I am snagging , completely in a zone, and be interrupted by the out-of-control loud giggles and laughter of my boys entertaining themselves while I get my bargain fix.  As my eyes scan over the small male figures as I count off silently in my head “1,2,3” (taking inventory of my boys, of course), my vision becomes momentarily locked on that bag, that gray D-bag Ryan has draped over one shoulder falling down to the opposite hip holding a meter, strips, lancet device, a Capri Sun, Smarties, icing gel, a 15 carb snack and two kinds of insulin and I have that feeling again, that feeling that washes over me like a cold bucket of water and I hear that voice in my head while there is an ache in my heart, “My son has a disease.”

Now it doesn’t happen all the time.  As a matter of fact, it doesn’t happen very often at all anymore.  But it’s those times that it does, when there seems to be no reason for it and it totally catches me off guard that seems to knock me on my bottom.  I fear that with the pump.  Right now, for us, it’s just that bag.  He has a shot four times a day and four-six finger pokes then nothing he wears says there is anything different about him.  And no one notices the bag but me.  It’s just a gray bag that to a stranger could be holding a game system or books or any sort of thing a boy would like to carry and have with him.  But the pump could be a totally different issue.  I read Penny’s entry “Community in My Community” and wondered if I was ready for such a step, for the stares that most likely will come along with a pump (although you MUST read this entry because it will touch your heart.  Thank you, Penny, for sharing). 

Ryan is anxious to get the pump.  He can’t wait.  He’s so ready to be done with the shots and have a cool device that gives him his life-source.  And I have been reading and trying to educate myself as much as possible so I have questions to ask while the Animas, Medtronic and OmniPod reps are there.  And I guess that’s why this is looming in my mind is all the reading about the different pumps.  And the thought keeps coming to my mind, “Are we ready for this?”

I’m not depressed.  I’m not angry.  I’m not overwhelmed with grief like in the early days.  I’m just anxious.  I’m simply being real, vulnerable.  Letting you in to see where I really am so you can offer up some wisdom (hint, hint for you d-moms who have been here where I am) and ask for your prayers for courage for this “green” d-momma.

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Comments on: "Here Comes the Anxiety" (7)

  1. Every single person I know is hesitant to get the pump. And every single one who gets it, later say, “How did I live without it.” I know that I had the anxiety you do. I went through the worry of the constant reminder attached to our kids. But the end result is the kids are happier with it. And anything that takes the edge off for them, is awesome in my book!

  2. From Quarterly Endo Appointment: “God is good. Gives us what we need when we need it . . . usually not a second before. Yesterday, I drove away thinking it’s okay that he has diabetes. I don’t like it; nope, not one bit. It’s not my plan, not even close. But for some reason, it’s HIS plan. And since it is HIS plan, I want to focus now on trusting HIM as much as I did my endo today . . . trusting that since this is HIS plan for Ryan’s life, my life and our family’s life, that God IS going to take care of Ryan and use him to do great things through, despite and/or because of the disease.”

    No, I do not have a child with diabetes. I have no idea the feelings you have felt or the things you have gone through. I cannot offer any profound advice. However, I have been keeping up by reading your blogs. I love that you are honest with yourself, and honest here as well.

    The only thing I can say is this: (again, please remember my naive perspective)
    If you are not ready for the pump, is it now or never? Can you have a little more time to be sure this is right for all of you? I know these seem like very basic questions. I am just thinking about you as a fellow mother. There are times when things happen we have no control over, and then there are other times when we have a choice.

    I loved what you said in your previous blog (quoted above). That thought can be applied for so many things, and I just wanted to thank you for your words. I feel that thought applies for this situation as well. You are such a wonderful caring mother, and I hope you receive the type of encouragement and uplift that you give so many others when you write from your heart!

    Thank you so much for sharing.

  3. Hello Amy – I want to tell you that every single D-Momma out here has been where you are right now. County myself in there too. So, first, know that you are not alone. My gal pumps with the OmniPod and it tends to be a more visual pump – people take note of it. I am still slowly getting used to the stares and coming up with a wicked one-liner for those who STARE – the best I have right now is ‘Yes, I had her iPod surgically implanted in her.’ That shuts them up and leaves them with mouths open. But I digress….
    It will all be OK. I have a feelin’ sister that you will love yourself some pumping! And the reminder of the pump will be that we have technology to keep our kids alive and how blessed we are, right here, right now. I cannot tell you to have anxiety, that’s part of being a D-Momma. I can tell you that you have a community that can help you and support you. It really will all be OK.
    Thank you for the link to my blog, I am honored my D-Momma-friend!

  4. Always in my prayers I pray for you, individually, and sometimes I see the anxiousness in your eyes and sometimes you cover it up-even to your momma. Just always know that I am behind you and praying every step of the way!

  5. Teresa L. Murphy said:

    Well, Amy, here’s my two-cents worth. . . again coming from someone who has almost NO experience with diabetes and NONE with children who are affected!! It just seems to me that, in this day-and-time, “different” is really the “IN” thing–tattoos, piercings, unusual hair styles and colors, funky clothes, etc. I don’t know how much of “the pump” would show, but GEE. . . .let Ryan design something to decorate it and just “GO WITH IT!!!” People are always going to stare at/about something; it’s just human nature. As far as it being a reminder that there’s something wrong with your child. . . he already has the D1 bag (right?) and just think of the “pump” as the MODERN approach–your family being really “hip” and up-to-date!!!

    I can’t imagine how difficult all of this is for ALL of you, but you are such a “trooper” and you’re raising the boys to “take charge” and be positive about the problems life brings their way. I, among many, admire and respect your courage and determination!! Hang-in-there!!

  6. I remember being at the pediatrician’s office before Caleb was officially diagnosed, and the doctor making light of having this contraption permanently affixed to one’s body. I remember it so clearly because I could not believe how casual she was about it. She was referring to another patient of hers and said,”she wears it and runs right along and plays”. As if it’s no big deal.

    I could not get Caleb on a pump fast enough! If we left the hospital with one maybe I would have been happy. Caleb was pumping in about three months and I could not wait. Every event necessary – completing the form of medical necessity, getting insurance approval, having it shipped and THEN setting up training – was painfully long for me. Hello, my name is Lorraine and I seem to be the odd one out – no reservations whatsoever. 😉

    Even so, I remember coming home from training, Caleb pumping insulin for the first time. It was a party atmosphere. We were all so very, very excited. Nevertheless, there was this finality to it all. This “for the rest of your life” part that took away a bit from that enthusiasm.

    So yes, I understand what the doctor was saying. Caleb does just run along and play. But please, don’t make light of this ma’am. You don’t live this each and every day of your life. Tubed or tubeless there is this thing attached to our kids that pumps life into them. It’s not “no big deal”.

    Good luck Amy. Let your heart or gut guide you. You and Ryan will make the right decisions. And you know I’m here for you, as are so many others, as you go through this transition.

  7. Amy, first let me tell you again how amazing you are.

    I have only a nephew with diabetes and he is on the pump. Now he is a teen and I think it was kind of like “the next step of growing up” or being more independent. I haven’t experienced it myself, but I think it will be helpful to both of you. As far as you saying: I’m simply being real, vulnerable is beautiful. You are supposed to be. This is the best gift of conquering this with Ryan. I think you are supposed to have those “moments” to put things in perspective, but don’t look at it in a negative way-of what “people” will think or struggles he may have. Look at it every day you can, with optimism of maybe making his life a bit easier sometimes. I have been through several “scares” with my kids growing up. I have lost hair because of worry, I have had many sleepless nights. There were times I was full of worry, only because as the mom, wanted to take all the pain and health problems away. The fact is, this is one reason God allows medicine, doctors who believe in what they are doing. You’re an amazing, involved, educated mom about your son’s D and doing every darn thing there is to prepare for a life to deal with it. As parents, we have to make the hard choices as you are now. I hope that you receive information to make you feel more at peace with it.
    Please realize there are times you will still worry…have your “shoppers euphoria” with the vision locked but hear the giggles, see the smiles, hug them every chance you can. You are so blessed. They are so blessed.

    I do feel bad you have to go through things like this sometimes, but I think about the impact you are making with your words, your experience, I think about the impact you are making on three wonderful young men (your boys) and I can’t help but feel proud of you, sincere love because of who you are.

    You are always in my prayers. You are always in my thoughts. I pray God will continue to bless all of you. love you.

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