What Dreams May Come

What Dreams May Come

This morning I woke up and thought the previous 48 hours were a dream. Then I saw the mini meter on my nightstand and Middles sleeping peacefully on the other side of the bed. I so badly wanted it to all be a dream.

I continue to check Middles blood sugars first thing in the morning, before meals and postprandial. Today his numbers did not spike above 149 and he woke up at 93. He was away from me over the lunch period so I could not check and he was not comfortable taking a meter with him to a friends house. He doesn’t want his friends to know until he hears it from a doctor.

I have not allowed him high glycemic index foods. Yes I know people with Type 1 diabetes can eat the cupcake but right now I am going to try my best to limit the fast acting carbs and let his pancreas rest (not giving him insulin yet). I’m trying to avoid the spikes and preserve beta cell function.

If newly diagnosed people go through a “honeymoon” phase I would say Middles is still in the “engagement” phase. I know the storm is coming (although I pray hourly that for the first time in my entire life I am wrong).

Middles fell asleep in my arms last night while lying in my bed with me. He was crying and voicing all his fears. His last words before sniffling himself to sleep were “at least now I get to attend Texas Lions Camp.” Texas Lions Camp is a week long sleep away camp for kids with diabetes. Sweetstuff will be attending for the 3rd time this summer and Sugarboy will go for the first time this year since he is now old enough. The problem is – camp is full. There is a waiting list.

My first prayer is that I am so very very wrong.
If I can’t have that – maybe there will be someway to get Middles into camp.

High 5

High 5

Day 27 Health Activist Writers Month Challenge

Yesterday’s prompt: (Im a day behind – life got in the way)
5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

5 Challenges 

1. Improving our families diet – While I am sure to always educate others that my kids, although they have Type 1 diabetes, can eat everything everyone else can – that doesn’t mean they should and I shouldn’t either. When my first child (actually my youngest child) was diagnosed with Diabetes I didn’t understand that there were different types of diabetes. I only knew about a type that restricted a person’s diet. My first thought when I was told Sugarboy had diabetes was that he couldn’t eat the chocolates I bought him for Valentines day. Of course I soon learned the differences between the types of diabetes and Sugarboy was able to devour his chocolates on Valentines Day. Still to avoid huge sugar spikes we try to reduce the amount of processed sugars we all eat. It is hard to say no to Reese’s Peanut Butter cups though.

2. Allowing my cwd to go for long periods of time to friends homes or events without me. Diabetes is a difficult monster to understand and trusting just anyone to notice symptoms of low blood sugars or trust my own offspring to notice their symptoms and take appropriate actions or ask for help has been a challenge. Sweetstuff gets it and does a very good job checking her blood sugar and taking appropriate actions. Sugarboy is young and when he best busy helping Green Lantern save the world symptoms and blood sugar checks often get forgotten. It will come with time – their better understanding and my ability to trust them.

3. Remembering to first say good morning, good afternoon, & welcome home to my kids – then ask them to check their blood sugars. As a parent of children with diabetes it is the first thing I think of when I wake up, the last thing I think of before going to bed and nearly every hour of the day. I sometimes forget to be a mom first and a diabetes care manager second. It helps that my daughter is as sarcastic as me and if the first thing I say to her when she gets home from school is “How were your sugars?” she will respond with “I had a great day how was yours?” (Love that she speaks my language)

4. Allowing others to help – I am a bit of a control freak. When I say “bit” I mean I need to control every aspect of my life if at all possible – if given the opportunity to fly the 747 I am about to board I would even though I have no flight experience. Allowing others to help is really the second half of a larger challenge which is asking for help. For over 5 years I insisted on being the parent that checks the kids blood sugars at midnight and again at 3am even though my body was screaming for rest. Finally this last February I asked my husband to help and take over the 3am checks. Asking took a great deal of strength – it took a great deal more not to criticise his actions regarding the checks and allow him the opportunity to learn. 

5. Maintain my faith. I was raised a Lutheran. I was a watered down Christian as an adult. I attended church occasionally, made most the big holiday services, took my kids to Vacation Bible School and volunteered to help out. I believed most of what the Bible told us – the whole Noah’s Ark thing has always been a bit of a stretch though. When Sugarboy was diagnosed I felt so broken – even though it was his body that was broken. I asked for help and I truly believed I felt the Holy Spirit come to me, wrap me in his arms and give me strength. For two years my faith increased, I began a stronger believer. I witnessed to others about the glory of our God. Then on April 19th of 2009 my only daughter and my first born was diagnosed with diabetes. I was seriously like WTF to our Heavenly Father. I’m not as angry now as I was then but I’m still not speaking to him very often. I am bitter and I question the methods of the madness. I am not saying that I don’t believe – I honestly don’t think a person can be as p***ed off at someone as much as I am and not believe at the same time. My philosophy right now “Faith is not the absence of doubt, it is the ability to believe in the presence of it”. I don’t doubt the existence of God – I do doubt his motives. I was raised to understand that HE either makes something happen or allows it to happen. Therefore – he could end the madness for us all. 

There may be some that read this last challenge and feel sorry for me, get angry at me, think that I am a blasphemer, think that the devil (I do doubt his existence) has taken hold of my soul. Please don’t feel sorry for me – it is a journey and like most journey’s I will come out stronger on the other side. You can be angry but I would question YOUR faith if you are angry at someone for acknowledging their struggles. I probably am a blasphemer – I do love Depeche Mode’s song Blasphemous Rumors – I do question God’s sense of humor. And as far as the Devil – well if he does exist he can kiss my arse. I am a good person and an intelligent person with Free Will and I’ll be damned (tee hee see what I did there) if the Devil thinks he can have even a portion of my soul. If you don’t like what I’ve shared feel free to pray for me – you don’t need to tell me you are praying for me – if prayers work (and I still believe they do) I don’t even need to know you are praying. I can offer a suggestion though – if you would like to pray for me – consider praying that I find that sense of peace and love I had when Sugarboy was diagnosed. That felt wonderful.

5 – Small victories:

1. Starting a Dblog. I had wanted to share my thoughts, fears, struggles, successes, moments of wonderful, etc etc etc for a long time. I didn’t have the courage to do it until the end of January and it has given me great joy.

2. Became involved in the DOC. Prior to starting my own Dblog in Jan I would frequently read a few other blogs. Not many but I had my favorites. I never openly followed the blogs and I never got involved with twitter. I didn’t even know their was a large DOC on twitter. I would occasionally post or read posts on the Children with Diabetes forums and I had my handful of other Dmoms that I would interact with on Facebook. I thought I had all my bases covered. I didn’t realize what I had been missing until I attended my fist DOC DSMA Twitter Chat. All of a sudden I was connected. I interacted with people thousands of miles away – even across an ocean. I realized that I wasn’t alone. All at once I was allowed to make jokes about diabetes, say FU to diabetes, and exchange frustrations and knowledge about diabetes with people who understood. I began to feel normal in the normal that I had known. (does that make sense?) 

3. I am allowing my Sweetstuff to attend a two night sleep over camp out with her girl scout troop and I won’t be there. (granted the girl scout troop leader is also a Dmom so I know Sweetstuff will be in excellent hands) This camp-out without me is a huge deal for me – see control freak paragraph above. 

4. I have started to exercise. That may not seem like a victory to those that are vigilant about exercise but for me it is huge. It’s not that I’m lazy. I work my bum off most days. It is that I rarely allow time for me to take care of me. Like the time I take to write on this blog – I wouldn’t normally ever allow myself this much personal time. I would instead focus on cleaning the house or working. I have come to realize I can take better care of my family if I also take care of me. 

5. Letting go of hate. There have been times in my life that I have held on to hurt feelings long after the event occurred that resulted in my hurt feelings. Keeping that hate or hurt allowed others to live rent free in my head. In the last year I have made  conscious effort to let go of past anger and hurt. I won’t say that I have forgiven those who hurt me or my kids but I have forgotten and moved on. 

Dream day laced with guilt

My Dream Day Would Be Laced With Guilt

Day 14 Health Activist Writer’s Month Challenge

Prompt – Describe your ideal day. how would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

I have struggled with this prompt in my head all day – well actually for a number of days since I read ahead. Many would expect me to write how my dream day would be a day in which my kids did not have diabetes. Of course I dream of that day but while I believe it is coming I don’t believe it will be in the next 5 years. Others may also expect my dream day to be one I spend having fun with my family – the thing is I get a lot of those days and I treasure them already. Earlier I started to type out my dream day as a day I get to meet all the wonderful people I’ve ‘meet’ in the DOC (diabetes online community via twitter and blogs) since I got involved. So many have already helped me learn, cope and laugh – too meet them in person would be oh so wonderful. Yet none of the above mentioned days are what I really dream of right now.

The day I dream of causes me to feel the dreaded “guilt” because the day I dream of would be all mine. I don’t often (ever) take a break from the diabetes care for my kids. Notice I didn’t say “get” a break. My dear husband recognises how hard I work and acknowledges the fact I don’t get enough sleep. He understands why sometimes my patience has run out and my temper is quick. He has recently encouraged me to ‘take a break’. I just don’t.

I have a difficult time asking for help. I mean a really terrible awful time asking for help. It isn’t a pride thing (most of the time), it isn’t entirely that I don’t trust others to do as good of a job as I do (if what I do is a good job – there are others who are much better at it), it isn’t that I couldn’t get away – we would have resources for me to utilize if I wanted to get away. It is that I am a control freak and if something ever went wrong when I was ‘taking a break’ I wouldn’t no how to forgive myself (also a big problem I have). I trudge along feeling tired, alone, incapable even though I don’t have to feel those things. Granted my husband would make a gazillion mistakes (sorry babe if you read this) but it wouldn’t be his fault. When Sugarboy was diagnosed I took the reigns and haven’t relinquished them very often, and even then only with multiple phone calls and texts. I haven’t given my dear husband too many opportunities to learn diabetes management like I know it. I learned by trial and error and if I don’t let others try how would they know.

So going back to my guilt laced dream day – If I really had a dream day it would be all about me. No kids (insert guilt here) and no husband (again insert guilt here). I would leave my phone behind and my computer too. I would pack up some comfy pants and tank tops, the latest edition of the Outlander series (due out in 2013), my ipod (with the next Lord John book downloaded on it to be used during the drive down), my sunglasses, a pair of shorts, my sonic care toothbrush ( I love that thing – makes my mouth happy), a package of Red Vines, my camera and my flip flops. I would get in my van rented two door convertible sports car (brand doesn’t matter) and head off to the coast (about 4 hours to a fairly decent one in Texas).

I would leave early (late) enough to arrive as the sun was coming up over the waves.
I would stop at a Starbucks and order a venti non-fat cinnamon dolce latte with only 3 pumps of syrup and no whip. I would park at the hotel that I would be staying at that night, grab my camera and take my latte for a walk on the beach. I would find a quiet place and start writing in the sand – words like anger, guilt, regret, sadness, and mistakes. I would let the tides take each emotion away leaving me light hearted and free – at least for the day. I would smile at strangers jogging and vacationers coming down early to set up a good spot for later day fun and I would know that I didn’t have to talk to them.

I would return to the hotel and ask to check in early and since it is my dream day they would say “certainly and also we upgraded you to a king Jacuzzi suite with a full ocean view”. I would run a hot jacuzzi bath (brush my teeth since they would be gross from driving all night) grab my book and sink into a luxurious bath complete with lavender and eucalyptus scents. I would have a tall pitcher of ice water with cucumbers perched near to keep me hydrated.

After the long relaxing bath and a number of chapters filled with my friends Jamie and Claire (main characters) I would slip into the complementary hotel robe and call down to have the nail specialist sent up. I would sit on my private balcony listening to the waves and seagulls as the nail specialist rubbed my feet, legs, arms and hands, buffed out all the dry stressed skin, and painted my nails.
My breakfast would arrive next; fruit salad, spinach quiche and black coffee. It would still be well before noon so I would sink down into the extra plush bedding and close my eyes for a mid morning nap.

When I awake it would be mid afternoon. The sun would be high and hot. I would slip into my shorts and a tank top, fill my water bottle, rub in some sun screen and head to the shore. Id toss my flip flops in my shoulder bad with my water and camera and I would start walking. Id stay just close enough to the tides that my footsteps leave slight indentations that are quietly washed away. I’d walk for miles – thinking, not thinking, singing to myself, not making a sound, listening to the waves whisper to me, snapping pictures and listening to children playing (not my own so I don’t have to worry about sun screen, riptides, or jellyfish), I’d watch people fly kites, rent jet skies, hop over the tides and fish. Along I would know I don’t have to do any of it, I can just walk. I would turn back when my water bottle is half empty.

In the late afternoon I would again curl up on the bed but this time I would read. I would read without a phone ringing, the dryer beeping, the kids arguing, dinner calling to be made, or the dogs barking. I would love reading but I would feel a bit sleepy so I would dog-ear my page and close my eyes. I would wake to my dinner being brought in on silver platters. Grilled salmon with mashed potatoes and asparagus, fried calamari, brushetta bread, and a pomegranate ginger martini. After savoring every bite desert would be served – chocolate moose cheesecake and a cappuccino.
After dinner I would head down to the shore again with a towel and again my book. I would read until the sun fell low and the twilight made it difficult to read with straining my eyes. At which point I would lie back at watch for the first evening stars with the whispers of the tides reminding me that it is ok to take time for myself.

I’d return to my room, take a hot shower, pull on my comfy pants and tank top and crawl into bed – setting the alarm to wake me in time to head home before my kids woke up in the morning.
During this entire day I wouldn’t check a blood sugar, wouldn’t count a carb, wouldn’t talk about school, kids, or housework.

So this is why my dream day would be laced with guilt. If I wanted to do this – I could. I make my own insulin and so theoretically I could take a vacation from diabetes. (Insert Sally Field “I could run from here to Texas but my daughter couldn’t she never could).  Prior to finding the DOC I would only feel guilty about taking a vacation from diabetes because my kids can’t, now I have grown to care about so many in the DOC that I would also feel guilty because they can’t take a vacation either.

My doctor, my husband and my family tell me I need to take care of myself to be able to take care of my kids. I’m sure they are right but would my dream day really be beneficial or would the guilt, anger and frustration I would feel after taking such a day be detrimental to my well being.

This day can never happen while my kids, friends and so many others fight the battle that is diabetes because I won’t rest until everyone else can too.

So much for not knowing what to write

So this is my third attempt at a blog. I started one years ago called Crazy is as crazy does but forgot my login and password after not having posted in over a year – so much for that – blogger couldn’t help me because I didn’t even remember what email I opened it with. Then about a year ago I started one called Several Shades of Crazy but again didn’t post and forgot login and password, forgetting this one makes me a little sad since I loved the name of it. So here we are again – third time’s a charm. I’m fairly pleased with the title of this blog Momof2T1s – I use the same name for Twitter – not that I have logged on to twitter in the last 2 years. No I am not normally so disorganized and non-committal – wait yes I am. Anyway – this is my newest and hopefully successful attempt at blogging.

I opened the account yesterday using an email that I use frequently so that shouldn’t be a problem to remember. I haven’t set up much as you can see – no gadgets or whatever – I don’t even know what a gadget is, something like a widget possibly that I learned about in my undergrad years but never have been able to purchase – or maybe I learned about widgets while in technical training for the Air Force while learning how to be a contracting agent. Either way I’ve never actually seen a widget. I digress. So I opened the blog but then sat wondering what I would have to write about. I read a few other blogs and the bloggers I read seem to have all there ducks in a row so I was feeling like maybe I would be in over my head. Then today happened – almost seemed orchestrated so that I would have something to blog about. (disclaimer – I see that there is a spell check available but wanted to warn readers ahead of time that I really am not a fantastic speller. Please forgive me if I miss a misspelled word.)

So back to today. If you haven’t read my ultra short bio let me give you an abbreviated portion of my already abbreviated bio. I am a happily married (98 percent of the time) 30 something year old mother of three. I have two dogs (one small and fluffy the other fat and furry) and two cats (one old and grouchy the other young and insane). Two of my children have Type 1 Diabetes – thus Momof2T1s. My youngest child (son now 7) was diagnosed at age 2, my oldest child (daughter now 12) was diagnosed at age 9 – two years after my youngest was diagnosed. That fact always surprises people, they (the people I referred to) always assume my oldest was diagnosed first. Lesson one in Diabetes – there is no rhyme or reason for 90 percent of the crud that goes along with it. My middle kiddo (son now 9) is just that, a middle child – stuck between an older and younger sibling that both have Type 1 diabetes and both are in advanced classes in school. My middle child really could use a blog all about him – It would not be difficult to find topics to write on.

Again back to today…

Today started at 1am when my alarm went off to wake me so I could check blood sugars (for those that are not a parent of a child with diabetes ‘CWD’ or a diabetic yourself – middle of the night blood sugar checks are common place. So at 1:00 in the morning my alarm sounded, it didn’t sound with a fun song from the radio like normally because one of my lovely children likely played with it so instead of one of todays pop hits I woke to static. So I stumbled into the master bathroom to turn off the alarm – yes I keep my alarm in the bathroom thus assuring I will get out of my bed to turn it off and take care of business. If my alarm is next to my bed I will be able to hit the snooze and/or off button in less than a half second while still asleep. After turning off said alarm I started to undress rather than exiting the bathroom to check blood sugars. I turned on the shower and grabbed a towel. I fully intended to get ready for the day. In no way will I ever suggest that being the parent of a CWD is more difficult or even close to as difficult as being said child, however I do sometimes suffer from diabetic brain (possibly like how some men suffer from sympathy pregnancy when their wife is with child – is that a real thing?) I realized my folly just prior to getting in the shower. Thus I turned off the shower, redressed and instead of checking blood sugars I feel back into bed. (The guilt of this and other times like it plagues me frequently). When my next alarm sounded at 6:00 in the morning I shot out of bed realizing my 1st mommy fail of the day and rushed to check sugars. Youngest at 67, oldest at 234. Thank goodness for guardian angels.

On to breakfast, since the youngest was at 67 I didn’t dose him insulin prior to his breakfast. I also allowed him waffles with syrup and made him smoothie. This breakfast contains about 75 grams of carbohydrates. Normally with a blood sugar below 70 we would give 15 grams of carbohydrates, wait 15 min and recheck the blood sugar. Since it was breakfast time and 67 isn’t terribly awful we moved forward with breakfast breaking protocol. Remember how I said I didn’t pre-dose since he was a little low – well that is also outside the normal routine. Thus at 8:30 – two hours past when he ate breakfast and an hour after he began school it dawned on me that I didn’t dose him for his breakfast. Queue call to school nurse to inform her of my second mommy fail and ask her to check my sons blood sugar at that time rather than waiting for schedule test time. I estimated that he would be in the 500’s (very very bad number – normal is 70-120), I asked her to please get him a water bottle and give him a no-carb snack for snack time. When I checked back with her 30 minutes later I learned his number was indeed over 500 – 518 to be exact. Second dose of guilt for mommy today.

Guilt sucks. I can see how guilt has value – a person commits a crime, feels guilty and confesses – thus justice will be served. However as parents we often feel guilt not because of an intentional wrong doing but as a result of a perceived failure. A child is behind in reading thus the parent may feel guilty for not reading often enough to the child when he or she was younger (yes this is me too and I will likely not address these specific feelings of guilt in this blog). Seeing a picture of the food pyramid may spark feelings of guilt by the parent for not providing the recommended servings of fruits and vegetables everyday (also me although since this deals with nutrition there is a good chance we will revisit this). A parent works long hours either outside the home or possibly in the home as a domestic engineer and when asked by his or her children to play a game the parent tells the child he or she is too tired or has work to do (also me on more occasions than I care to admit). My point – even as parents of typically developing children that do not have special needs (cognitive or medical) we are surrounded by opportunities to feel guilty; add in the responsibilities of a parent of a CWD or special needs child and we have guilt overload. I tend to forgive myself fairly easily noting that I am only human but I don’t bury the entire hatchet – I leave the handle sticking out so when days like today come along with two large FAILS all the past guilty feelings involving diabetes, fluency, playtime, nutrition, etc. come slamming into me and knock me flat on my bum.

Normally on days like today after putting the kids in bed I would retreat to my shower. It isn’t a super fancy shower but it does have a bench built in. I would normally sit on said bench while the hot (nearly scolding) water pours down on me. Sometimes I would cry, sometimes I would just sit trying to clear my head by focusing on how badly I need a pedicure (I’ve only had two pedicures in my life – I’m very ticklish). While those 45 min do help calm me and do provide some therapy I felt like I needed another outlet. Maybe other parents of CWD fight similar battles. Actually I know they do, I’ve been to the forums, I’ve read the blogs – I am not alone. Maybe those parents that post and comment find a level of peace from sharing. Insert Momof2T1s blog here. I am hoping I will provide something for others. It may not be helpful information. It may not be knowledgeable information. You may not even find it funny even when some of it is meant to be funny. But maybe someone will find peace in knowing there is someone out there more screwed up than them (see profile pic – when I get one).

Post Scriptum – (Only Latin I know)

Today happened to be a day that I was volunteering with my local JDRF chapter presenting a Kids Walk to Cure Diabetes at an elementary school. The students and teachers at the school were great and I was on fire with my presenting (some days are better with presenting than others based on level of exhaustion, student behavior, migraine level and amount of coffee consumed prior to presenting – that seems normal right?) My nurse at my son’s school kept me updated regarding his blood sugars. His sugars responded well to his insulin correction and he did not develop a headache (common side effect of high blood sugar for both my son and daughter). So near the end of the day when I had just finished presenting to the 4th grade a student approached me while his class was lining up. He told me that his dad told him that Type 2 diabetes was worse than Type 1. I responded by saying they are equally bad. Regardless of which type of diabetes a person may have they have equal chances of developing complications such as vision loss, kidney and liver failure, heart problems and nerve damage. I assured the student that with proper care and the good choices regarding medical care, nutrition and fitness a person with diabetes will likely not experience complications due to diabetes. The student thanked me and left with his class. On the way home I spent time contemplating if one type of diabetes is worse than the other. As a mom of two kids with Type 1 I feel somewhat biased and believe Type 1 is worse because people have it for a longer period of time (diagnosed earlier in life normally). However, people with Type 2 often have Type 2 for much longer periods of time prior to diagnosis (some may have it for a decade and not know) thus leaving them a higher risk of complications. Do you have a thought regarding which is worse – is one worse?