You don’t know the half of it

Last November, JDRF  the leader in research and advocacy for type 1 diabetes put out some videos called “You Don’t Know the Half Of It“.   They showed interviews with people or children with type 1 diabetes who talked about what it’s really like,  the things that people don’t see and don’t really understand about this disease.   Jason said the video’s were depressing, and I agree, they kinda were. 🙂   But really, I think that was the point.    Those smart people at JDRF know that most people only see the outside of the disease, and they really wanted to show the darker side, the hard things about living with diabetes that people wouldn’t ever see.

But these videos got me to thinking that even though our struggle here is with diabetes , I know that so many people are struggling with different things.   Our family has received a crash course in type 1 diabetes, but in turn we know so little about the cystic fibrosis, the fetal alcohol, the ADHD, the autism and the congenital blindness – and the list goes on – that my friends and their children are dealing with.    I many have gleaned a tiny bit of information from articles I’ve read, and picked up a few insights from spending time with these children, but do I really know the half of what they are dealing with?   Probably not.

And can I tell you something?   I RESENT it very much when kind-hearted people have told me what I should be doing for Sarah, and are sure that if I just did this one thing her diabetes would be easier to manage.  Thankfully this hasn’t happened very often, and to be honest I’m not sure why I get upset.   Maybe it’s because diabetes already hurts and I already know that there isn’t an easy way out and I wished this person really knew what they were talking about and what we were going through.

But then I kinda of cringe here, because I know that many times my pride has deceived me and allowed me to believe that I have some special insight into other people’s problems and have allowed thoughtless opinionated words to come out.  It’s makes me sad because I don’t want to be that person, I want to be wise!!!   I love that verse in James (James 3:13-18) when he says, “Who is wise and understanding among you?”  And guess what, wisdom isn’t pointing the finger because I’m harbouring selfish ambition, or being proud and therefore critical.  And it’s certainly not telling others what you think they should be doing.   James says wisdom from the Lord is  “first pure, then peaceable, gentle, open to reason, full of mercy and good fruits, impartial and sincere.”  

I heard a quote recently that made me laugh – it was “Not my monkeys, not my circus”.   I liked it because I know how easy it is to get drawn into things that really don’t have anything to do with me.   And in most cases, especially when it concerns other people’s children,  I need to remember that I don’t know the half of it.

 

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Challenges

I had a bit of an emotional day yesterday.  And no, it wasn’t because of Ava, it was because of Sarah… or I guess because of her diabetes.    Since we’ve been home and the care for Sarah has shifted from Jason to myself, I’ve been going at it for two months now, but it struck me that this is not going away… ever.   And it just seems so huge.

I guess it’s just that some days it’s just so over-whelming.   Like Thursday night when I made dinner and then sat down to figure out the carbohydrate count of the meal… for some reason it just ended being so complicated and I just couldn’t figure it out and dinner was delayed and it was extremely frustrating.   And then there are the days when Sarah doesn’t want to check her blood and flinches when she gets her needles and I just want diabetes to be gone and I just don’t want Sarah to have to deal with it for another day.

I’m so grateful to my friend Kim who was doing some research on Type 1 diabetes on Thursday and sent me some pins and then I went looking for some myself.  So I’m not sure if she found these or I did… but I like ’em…

heros

And this one, the definition of bravery….

i_do_what_i_have_to_to_survive_by_atouchofdestiny-d4ddgdy

And of course this one…

babydiabetes

Hahaha.    But once again God is faithful and He gives us the peace and the grace to deal all the ups and downs of diabetes.   Through the times when Sarah’s sugars are out of wack and we don’t know why, or when we think about the upcoming seasons of candy and treats and having to find a way to make it all work for her, without making her feel stigmatized or left-out, and without making her resent her siblings or them resent her.  Sigh.   Oh the challenges life throws our way.

And speaking about challenges, please pray for Aleeda and her mom Tanya.  Aleeda is our little friend from Sick Kids who received her new heart at the end of July, but is still in the hospital dealing with some feeding issues.  Before her heart transplant she was doing a combination of oral feeding and being topped up through her ng tube at night.  But now the doctors have decided that she needs a g-tube, a surgically placed feeding tube that will go directly into her stomach.   I’m excited because I actually have a plan to go to Toronto on Monday to spend the day with Tanya and Aleeda and our other friends at Sick kids, so I would really appreciate your prayers just to ensure my health stays good between now and then so I don’t carry any unwanted bugs to Aleeda.

Please also pray for little Leo, another one of our cardiac friends who is having major surgery done at Sick Kids on Monday.  We are so grateful he will be in good hands!

I’m so thankful that I serve a great God who knows all about challenges,  and has promised that He will give me everything I need.   That why I love this verse,

2 Peter 1:3 His divine power has granted to us all things that pertain to life and godliness, through the knowledge of him who called us to his own glory and excellence,

I can just rest in His promises.  Praise God.

Amen.

Honeymoon

What a beautiful day today!  Too bad it deteriorated into a thunderstorm tonight.  And apparently in our good old Ontario fashion, we are going to be experiencing high humidy tomorrow…  already, although it’s only April.  But it’s Ok, as long it’s not snow.

And I had to write tonight to say that Sarah is doing good.  Her blood sugar did spike last night along with her fever, but at that point we didn’t know if she had any ketones in her urine (because she was fast asleep) so we held off on giving her extra insulin and then waited until midnight to check her again.  Thankfully by then her blood glucose levels did come down a bit and we were able to check for ketones and didn’t find any, thankfully.     And then when I checked her blood sugar again at 4:00 am (was up anyway feeding Ava and pumping), she was below 10, where she is supposed to be, praise God.   It really is such a blessing that she is still in her honeymoon period where she is still making a bit of insulin for herself, and she does tend to self regulate at night.  We don’t know how long this phase will last – but we truly believe that God is arranging it so we don’t have as much stress and worry with her right now.   It’s just so weird dealing with diabetes and a bad cold – I can’t even give my child lemon tea with honey in it, which is frustrating, but hopefully before Christmas Sarah will be on the insulin pump and that will be such a game changer.   We are looking forward to it.

And it was fun to hang out with Sarah today and the sunshine today did alot to lift my spirits.   Sophia is staying for a few days with my mom, which is wonderful because Sophia likes to engage me all day long and then gets frusterated when I’m too busy to play with her.  Recently she has said a few times that she would like to send Ava away.  Oh dear.  I know she loves her but I can understand that for a three year old it would be fruaterating when mommy seems to spend all her time on the baby.   So I really appreciate it when mom and others that take Sophia off my hands occassionally.  (Thanks Dianne and Rachel!) And even though I’m sure  Sophia talks their ears off, she just soaks up the attention and though I’m sad it can’t be me giving it to her all the time, I know she benefits.

And now I think poor Ava may have picked up Sarah’s cold!   She seemed a  bit more snuffly again this morning and she might be coughing a bit more too .   I record a lot of information about her during the day – like her weight and her oxygen saturation levels, but I still don’t record how many times she coughs. 🙂   At least this week I don’t feel I need to worry as much about her heart, and know now what a cold can do to her, so hopefully we can avoid any more trips to the ER.   But please keep praying for her, we just don’ t want her to get any  sicker.

So tonight we are thankful that Ava is doing OK – that Sarah is manageable and that honeymoon periods for diabetics exist.  God is good.

Delay and Sick Days

So I heard from Toronto yesterday and they are almost 100% sure that Ava’s catheterization scheduled for next week has been postponed due to her cough.  Boo hoo.   So even though it’s not officially cancelled yet, it stands to reason they don’t want her sick and coughing if they need to check the pressures in her lungs.  And I certainly don’t want to have to do this test twice.

The news is a huge bummer, but I’m glad they had warned me last week when we were in emerg that it might happen.   So we keep waiting!  It looks like we will still be going to Toronto next week for Ava’s sedated echo which was scheduled as part of her pre-cath work-over.   Please pray for that because last time she had a sedated echo, she went all gray and limp when she was coming out of sedation – and we don’t want that to happen again.  Actually,  I’m starting to think of the catheterization itself with a little bit of hesitation.   It is a 2-3 hour procedure done under general anesthetic and there is always risk with that.   I hadn’t really thought too much about it before, but now that it’s been delayed  I’m going to have lots of time to think.   And it’s a shame, it would have been nice to have it done and over with before I realized I should be worrying. 🙂

And then to top it all off,   Sarah came down with a fever tonight – and that’s not good for her sake or Ava’s.   She is constantly playing with Ava and holding her, and we can’t afford for Ava to get sick again.   And for herself , when diabetics get sick their blood glucose levels go all wonky.   So tonight we need to check Sarah’s blood sugars every four hours to make sure she’s OK.     Illness apparently makes your demand for insulin go up – so that can affect a diabetic by making their blood glucose levels get too high and they can develope diabetic ketoacidosis (DKA) – which is very very very bad.    And here in London we don’t have access to a Diabetes doctor 24/7  like we did when we were in Toronto, but at least here we have 24/7 access to our friend Dave… at least that’s what he says.  Thanks for your help tonight Dave!

So we keep trudging along here,  through the delays, and through the Sick Days.  Please keep us in your prayers!

Back to school

So Sarah is back to school, much to her chagrin. 🙂   Thursday was her first day back and she had a great day, and then Friday morning she was back to her old tricks and saying she didn’t want to go – but thankfully Jason and I know that’s ridiculous because she adores her teachers and always says she had a great day when she gets home.

sarahbacktoschool

An it looks like things are going to go well at school.  Her classroom has an alarm clock now that goes off for her snack times, and at lunch-time she goes to the office with one of her teachers to check her blood for her sugar levels.  And I think for the first while a nurse from the CCAC will be there at lunch too to make sure Sarah checks her blood Ok and eats all her lunch.   And that’s important because she needs to eat her carbs so she won’t get a low.   We are so appreciative to our wonderful school that has been doing everything they can to make sure that those that are taking care of Sarah know how to recognize the signs of highs and lows and I’m sure it’s tough for Sarah’s teachers as it’s one more thing for them to think about in a busy class of kindergarteners, but they have met the challenge and have just been wonderful. (Thank you Mrs. Murphy!!)

And there is a ton to learn about diabetes and I know that I still need to learn a lot.  Jason has been doing so much with Sarah that I always refer to him, but I’m hoping that when things aren’t so intense with Ava that I can get more involved.    It’s kinda funny though in terms of God’s timing, because if Sarah had been diagnosed when life was normal and I had taken on the learning and Sarah’s care, I’m not sure her diabetes would be managed so well.   Jason is a bit of a diabetes dictator and keeps Sarah on track quite strictly.  One night when Jason went to bed early I gave Sarah a snack of sliced strawberries, about 1/3 of a cup, so maybe just 3 carbs and he nearly bit my head off when he found out because Sarah isn’t supposed to get bedtime snacks.   And the funny thing is she was saying to me, ” I really don’t think  I should be eating this” but I convinced her otherwise,  crazy momma.   Boy,  I really hate diabetes.  And Sarah has been saying that lately too – she just hates it and when she says it, it  makes me want to cry because I know it’s not going away.     But we press on.   And I had a great idea tonight when I went for a walk about exploring more about living with diabetes, so stay tuned.

And Sophia is getting a cold, oh no!!!  I should have known as she’s been wanting to nap a lot lately…

Sophiaasleep

Last week when Sarah wasn’t around to play with Soph went downstairs, but ended up napping down there instead of playing.  But  now that she had a cold I’m so worried about Ava, as Ava has been coughing more and spitting up.  I’ve been praying that God would protect her and I hope He hears my prayer because she just can’t get sick,  she can’t!

And this week is our echo…  so please keep praying that Ava’s heart function hasn’t decreased anymore.

Lots to pray for.    Thankfully strength, peace and joy are free when we ask God for them.  I always like to think of it as an exchange… here God, you take my worries and I will take your peace.   I can always give Him my weakness and He gives me strength.    And here is a verse for me right now as I sit here hating Sarah’s diabetes and wondering if Ava will be OK…

Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9 ESV

What an incredible promise and what an incredible God we serve.

AMEN.

And she’s 6!

So sweet Sarah turned 6 today!   It probably wasn’t the most memorial of birthdays, but thanks to Jason there were balloons and pancakes for her in the morning, and after breakfast Grandma and Sarah walked to the hospital to see Ava and I.   And there was a little something waiting here for Sarah….

Her very own bravery beads…

braverybeads

Here at Sick Kids, the kids can collect bravery beads, and there is a different bead for every test, procedure, poke etc, that a child might get.  And we’ve been collecting the beads for Ava while she’s been here.   And as you can imagine,  Ava’s bravery bead strand is about 3 feet long by now, which is kinda makes me sad in a way, but then there are kids here with miles and miles of beads.

Anyhow, so Sarah really liked Ava’s beads and whenever she saw them she would say, “But I’m brave too!” referring to all the pokes and needles she gets now with her diabetes.    So when I was talking to my wonderfully kind nurse Jessica yesterday about how Sarah loved the beads and how I was thinking of starting my own version of bravery beads for Sarah,   Jessica said that she deserved the Sick Kids beads because she was a patient here, so she put the above beads together for Sarah while I was gone for dinner last night.    Sarah loved it.  And it didn’t take her long to string them up…

sarahbeads

And then I had bought her a ton of beads to have at home so that she can add a bead for every finger poke and needle she gets… and yes there are going to be a lot, but hey, if it makes her feel better than I will buy her beads until she’s 20. 🙂

Then she got some cuddle time in with Ava..

sarahava2

She had held her earlier in the week as well…

SarahAva

And Sarah is a such a good big sister.  At one point Sarah and I had gone out to get her a snack and when we came back Sarah wanted me to get her some water and ice from the kitchenette, so she said to me, “You go get the water, I’m going to the room to check on Ava.”    I love it.

She also had presents and cake – and yes, diabetics can still have cake – and I think she enjoyed her low-key birthday with her family.

Oh our Sarah.   You are brave and so strong and so sweet.   Your daddy and I love you very very much and are so blessed to have you.

Happy 6th Birthday Sweetheart!

Our two troopers..

Our two sweet girls did so well today! And Jason and I survived the day as well. I’m still feeling the after effects of the huge shock we received yesterday, but I feel tonight like perhaps I’ve moved a bit closer to accepting Sarah’s diagnosis. For most of the day today though, I would just look at her and think of it and start to cry, still not believing that she is going to have diabetes now for the rest of her life. It even still seems surreal when I type it. It just doesn’t seem possible.

We learned so much today at the Diabetes day clinic we attended all day with Sarah, and even though it was information over-load on our very tired brains, I think we retained some of it. We learned that to get juvenile diabetes you first have to have the genetic predisposition to it – and then there is some sort of environmental trigger to start it. When both of those factors come together, your body starts attacking your beta cells from your pancreas – and since the beta cells create insulin, your body’s ability to make insulin disappears.

The frustrating thing is, is that they have no idea what the trigger is that starts it, or if there are different triggers – they just really don’t know anything at this point.

But we were assured today that it wasn’t anything that we did, or Sarah did, nor was it caused by eating too much sugar. It just happened. Just like Ava having Turner’s Syndrome. Like my dad says, we live in a fallen world, full of sin and decay and these things are just a part of life. I’m just having a hard time accepting that they are now part of my life. It’s our new reality, and I’m still bothered by it!

Anyway, we spent the day being educated by a really kind nurse and a dietitian learning about the types of insulin and how it works and how to inject her and when Sarah can eat and what she can eat.

So the drill for Sarah now is 2 injections of insulin in the morning before breakfast, 2 more injections of insulin before dinner and we have to check her blood sugars 4 times a day, so that’s 4 times a day she needs her fingers poked to get a drop of blood. That’s 8 pokes a day, my poor girl. But if anyone is tough, it’s Sarah. She had blood drawn in emerg yesterday with a butterfly needle and she watched it and didn’t get upset at all, she is much better at all this than I would have been at her age!

And thankfully Sarah doesn’t have to change her diet, she can still eat everything like normal – it’s just when she can eat has changed, they have put her on an eating schedule. Eventually I’m sure Sarah will get an insulin pump which will make life so much easier, but for now, it’s lots of pokes and a plan. Oh well.

And again, Sarah did great all day. Now she didn’t want to check her blood at lunch and really didn’t want her insulin at dinner, and I of course had to be the one to give it to her! I didn’t want to poke her with a needle just as much as she didn’t want me to poke her, but I think I was the only one crying. 🙂 We managed – thankfully the injections are done with a special pen like thing – and then she was fine tonight when we checked her sugars. Actually she was mad at us for not having a tissue ready to wipe the blood off of her finger after, but I would rather her be mad then sad or upset!

And can I just say how much I appreciated everyone’s kind words and comments today? Jason and I both appreciated them to much, and found them so encouraging! You all don’t know how much your supportive words mean to us, they help, they really do.

And I can’t forget to tell you about Ava, sweet little Ava! She was a doll today! I think God knew we wouldn’t have the strength to worry about her today and we didn’t have to, she had a great day. And we did end up getting to spend quite a bit of time with her during our breaks with Sarah. And we had a great nurse today who let Sarah spend time with Ava too.. that was wonderful.

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sarahava2

And best of all, this afternoon Ava had her eyes open and was looking all around, it was so sweet. She is being weaned off her morphine so she’s not in such a daze, and we loved seeing her eyes all bright and open. And I helped give her a bath today and I got to lift her up while the nurse changed her sheet, how wonderful it felt to hold her! I haven’t held her since December 5th, 16 days ago, and it did my momma’s heart good just to hold her in my hands for those few seconds. And she’s even breathing on her own tonight even though they haven’t removed the ventilator. And she had her catheter removed, so we are definitely making progress, we are so thankful.

So thanks to God’s grace we made it through this day. We are exhausted, but encouraged by how well things went today. Please keep praying that both our little troopers would have good days tomorrow as well.