Sets.
(Shaking my fist to the universe.)
Sets!
I'm failing...or something.
Poor L has had his sets changed almost every other day lately. Today...I couldn't get him out of the
300's. When we got home from my in-laws
tonight he reluctantly showed me the 470 that popped up on the screen...
So help me...another set change for my baby.
I asked J to fill the reservoir for me. He is happy to do it. He's GOOD at it. How he can pull that insulin out like butter,
I do not know...but in less than a minute's time he had a beautiful fresh full
reservoir waiting for me.
I confidently opened a new set and attached the head to the
reservoir. I rewound the pump, and was
about to prime the insulin through the tubing when I accidentally pulled the
needle out of the set, rather than pulling the rubber safety nub off the
needle. (Good hell, how I did
that...there are no words. Again...I do
not know.) I couldn't safely thread the
giant needle back into the set, so...
Ruined.
"Dang it!" I say completely frustrated looking
towards the heavens, "THIS IS NOT MY JOB!"
J peaks his head out of his room...thinking my comment is
for him.
"I'm not talking to you J...I'm talking to your
father." Said in a way where each
word escalated in both sound and crazy inflection.
He's scared. He knows
his mom is about to lose it. He ducks
away quickly.
Starting over. New
set. Reservoir inserted, the piston in
place, I prime the tubing and gently lay the set into the rocket. As I pull off the sticker I somehow lose
control of the entire contraption and drop it on the counter, forcing the set
to fold back onto itself and render the sticky part of the set completely
useless.
Trying to catch it on the way down, super slo-mo like, the
needle in magnificent fashion pierces my finger at the exact right moment and
bright red blood runs down my hand.
Tears.
Angry tears.
I haven't been angry yet.
This is new territory for me. I
wasn't angry at Ryan. I wasn't angry at
God. I was angry that Ryan was
gone. Angry that he wasn't here to make
me feel better. He always could make me
feel better. Hell, just his sweet face peering
around the corner could make me feel better.
Anger. Tears.
I could barely get the third set ready as I shook and cried inconsolably. I knew I was upsetting the boys...but the
tears rolled fearlessly down my cheeks.
Nothing would stop them...I knew that.
I don't know how I did it but set number three was finished
in record time and inserted on oh-so-hesitant L's stomach.
I went to my bedroom and collapsed on my bed. Angry.
I need my husband. I NEED
him. How did I ever think I could
survive without him? I can't do it
without him! This is total crap!
And then a knock at the door. The boys were going to bed and they wanted to
know if I would be joining them for family prayer.
I took a few deep breaths and sized myself up in my bathroom
mirror.
Red eyed crazy. It
would have to do.
I made my way out to the living room and found everyone
ready in a circle on the floor.
J took my hand and said, "I've got the sets for now on,
Mom."
I wanted to say no. I
wanted to tell him it wasn't his job.
But I know it is second nature for him now. I know he feels it is something he can do to
help is mother. In that moment I knew I had
to let him DO something. I nodded and
felt an immediate burst of love for all my boys. They so want to take care of me. I don't want them to have extra
responsibilities...I want to do it all for them. But we all have to do more now. We all have to work together and find our new
roles.
It was L's turn to pray tonight. He prayed for another beautiful day. He prayed that tomorrow, as the sun shined,
we would be able to remember daddy, and smile.
How could I be angry after that?
How can I be angry when I am blessed with such amazing
boys?
I don't know...I'm sure I'll find a way. I'm not so far on the crazy side that I don't
know my emotions will overfloweth for awhile.
All of them, the good and the bad.
I'm just happy that when they do, I'll know that my boys,
and prayer, will always see me through.
Well woman, here I sit in my jammies, sneaking a quick blog check in before breakfast and now I'm crying too! I know you felt at the time that you were going crazy but you are seriously, honestly just doing what is necessary at this point in your life and grief. I'm not sure that I should say this but none of you will ever be the same. How could you? But life will go on. You are finding a way every day and your boys are half Ryan, he is still there for you inside them. Don't try to stop the tears they are so cathartic. If I've learnt anything in my life it's to cry when I bloody well feel like it! (I sounded terribly English there, hey?). Off to tea and breakfast now. Will be in touch again soon as Frank, Andrew and I are hatching aplan to send some English goodies to you all in the mail! Big hugs, lots of love, Jules
ReplyDeleteat a loss for words.
ReplyDelete((HUGS))
much love sent your way.
Tears in my tea......
ReplyDeleteLove Amanda
U r loved
ReplyDeleteXoxo
I was good, thinking of how many sets I've pulled off the needle and folded the tape onto itself so it was useless... And mine is preset into a rocket already. And you know I've already about taken my finger off on a cartridge needle, But then... Then J's words ("Ive got the sets from now on, Mom") grabbed my heart and the tears of "WOW" started flowing. I don't know how your going to do it, Meri, but I know you will... Together, with your boys.
ReplyDeleteI love you MTW, by the way <3
ReplyDeleteSimply amazing... All of you.
ReplyDeleteHi Meri,
ReplyDeleteGod Bless You....I have followed your blog for a long time and I am SO sorry for the loss of your sweet Ryan! Two of my three children have type 1 so I can somewhat relate to some of the frustrations you encounter. I believe your boys use quick sets? We used to use those but we had so much trouble with bent cannulas and high blood sugars. Have you ever considered switching sets? We now use the Sure T's and they work so much better. Just a thought. Hoping for comfort for you and your boys in future....
Kim
So sorry to read about your meltdown... but so happy it had an ending like this.
ReplyDeleteKids... they'll surprise you every time.
Im angry for you too Meri!! Im angry that Ryan was taken from you and your boys....you SHOULD be angry, right now thats just what you need to feel. There is nothing wrong with being angry in this new life without Ryan, and I know that day by day you will work past it. ((HUGS))
ReplyDeleteThose boys, I'm telling you are the most amazing boys I have ever meet (or not) in my whole life. I love them and I love you,
ReplyDeleteTears at work...you will find your new normal but it will take time and working together....Lots of hugs and prayers to you all.
ReplyDeleteYOU living out loud in front on them will invite them to do the same ... at least that's my view from here. They will need to have those "meltdowns" too ... and then you can say, "I've got it ." Wow, your boys are really amazing!! Love and prayers to you, Meri.
ReplyDeleteYour boys ARE amazing, and they're a reflection of you and Ryan. L's prayer melted my heart. I can only imagine how it touched you.
ReplyDeleteSending love, SCL, more love, MTW, and big, big hugs as you find your way. ♥ ♥ ♥ ♥
I'm with the others. Tears flowing down my face. The biggest gift you can give them is letting them step up, take over, take on. They need action. Validate them as you are by accepting their help, their courage, their gifts. You are all incredibly amazing people and the world is so blessed to have all of you on the planet. Think of the lives those boys are going to touch and change! You do them a great service by letting them be men, even if they are still young men, and letting them share more responsibility than you'd like them to have. They want to do the same for you - don't forget that! Responsibility is empowering - it's not a bad thing. It's only bad when YOU shoulder all of it yourself and are overwhelmed by it. They can do this and they have one hell of a mom who is letting them share the burdens and the joys that come with that accomplishment! How great is it for them to feel needed and valued? Amazing!
ReplyDeleteSending love and strength to all of you Meri.
ReplyDeleteMeri,
ReplyDeleteI love your honest posts!
I had a brother with cancer when I was 11. Letting them step up and help out gives them something to do. It was so much harder if when I couldn't do anything than when I could do something to help. When my son was diagnosed with type 1 I mistakenly thought "I can do this. I can do something about this. I have some control vs having a child with cancer." Boy was I wrong! At least though I can do somethings to help. I'm glad you are letting them reap the blessings of helping. Don't be afraid of letting others help too. Let them be the Lord's hands.
Wow, Meri. I have nothing else - just admiration, respect and awe of you and your amazing boys.
ReplyDeleteMeri,
ReplyDeleteMy heart goes out to you all, it's terribly unfair about Ryan and even at the end he told you "it's going to be ok". That's the kind of man he was. I bet he knew there were going to be some rough times for you as you all come to terms with his loss. And while this meltdown felt terrible, it's one of those tough times and you will be ok. It's normal, it's healthy to have feelings happen. It shows you're moving thru everything that is involved with such a tragic loss.
When I read that J had told you that he's "got the sets" it struck me that is something Ryan would have said. While he's not there, you and Ryan have been raising an amazing set of young men. I also believe that they want to help, indeed "need" to help, so please continue to let them.
You are an incredibly strong person Meri, I've always been impressed with that about you. But even then strongest among us need help now and again. That's ok.
It's going to be ok.
Much love,
Scott
In a strange kind of way, a reading of 470 is kind of an acknowledgement that things are "normal". No, those aren't where you want him to be, but the fact is that stress can wreak havoc on blood glucose numbers, and J's might not be due to the set, but how he's emotionally dealing with the loss. No 2 kids will handle such a thing the same way ... I've heard stories of people having to reduce basals by 50% during similar duress because the kids are going hypo way more often also caused by stress. Perhaps diabetes is saying "I'm still here and I demand attention, too!"? As long as J isn't in DKA, you do what you can and hope it works. These "tests" may not be what Ryan had in mind, but the fact that he had confidence in your ability to deal with them is proof of that. In a strange way its also as if Ryan is saying something else too: the fact that you acknowledged love for the boys and their ability to manage some of those tasks is definitely something he would have wanted to see, but perhaps he wanted wanted YOU to see what that meant, too?!
ReplyDeleteYou can do it and you ARE DOING IT! And beautifully. Your boys are amazing.
ReplyDeleteI jabbed myself with a big needle the other day and day-um! It hurts.
Be so, so kind to yourself. I wish I could mail you a Starbucks gift card for a big, cozy Pumpkin Spice latte but maybe you live in a hot climate, or don't drink coffee.
Love your boys . . they are precious!! And you too!! . . . Meri, in all reality it will probably be worse before it gets better BUT IT WILL GET BETTER . . .one small step at a time. The stages of grief will come . . .and they will go and it will get better . . .and each stage is so important in the healing process . . .don't be hard on yourself . . .your life mate is gone, your heart hurts . . . your world is upside down . . .give yourself permission to have the feelings you are having . . .its ok!! :) Love you sweet girl . . .
ReplyDeleteI am not sure if this is kosher, but one thing with sets I've been doing lately---because I have a bubble problem---is filling cartridges in advance. Maybe this could be something J could do a bunch of--maybe fill 10 cartridges for the week?--and then they'd be ready, all lined up and waiting, and it would cut a few steps out of the rigamarole.
ReplyDeleteI realize it is unlikely this is actually a good idea, or something new to consider, because I am new at this and made up this system based on one viewing of a not very popular YouTube video.
You have amazing boys and an amazing family! I think a lot of us parents split the tasks and specialize. Crying in front of people or being there when someone's crying takes bravery, and there again - you have an awesome family.
ReplyDeleteBe proud of Ryan. Be proud of all the infusion-set tribulations he endured for the kids when he was here (do you think he got every one of those sets right on the first try, especially the early ones? Even he wasn't infallable...though sometimes he seemed pretty darn close). Be proud of the values he instilled in J, and how quickly and how willing J is to grab hold of the wheel that Ryan used to steer the ship. Be proud of the lessons he taught L, in saying just the right things at the right times. Ryan is alive within his children; there is absolutely no doubt in my mind about that.
ReplyDeleteI know it's tough that there are now five instead of six. You are blessed that there are five who are absolutely dedicated to each other and to seeing the wishes of the family patriarch through. You don't have to do this all alone.
Meri, I'm in tears just thinking about you and your boys. J stepping in and saying "I've got the sets for now on, Mom." was right out of Ryan's heart. He's a reflection of the love he saw every day. He's a strong boy growing into a loving man.
ReplyDeleteLet the boys help you. They need it as much as you need them. Together you will all find your new normal. You can do this...you will be ok. You and your boys are very loved and we are all here for you too. I read every post and pray for you everyday.
Aw, Meri, you have the most wonderful boys in the world. They are definitely a testament to the love you and Ryan shared. It's okay to be angry. And it's okay for the boys to see you hurting and angry. They need to know that it's okay for them to be angry too. Grief is much easier to bare when it's shared and not bottled up. Showing your boys that you are grieving too is going to make it easier for them to share their grief with you. A grieving family is like a house of cards....as long as each card leans and supports/is supported by another, the house stays standing. God knew what He was doing when He gave you and Ryan those four beautiful, amazing boys! Let them be your rock and you can be theirs. Sending you all my love and prayers!
ReplyDeleteThis post touched me in so many ways, Meri. Thank you.
ReplyDeleteit takes team work...and you have an amazing team!
ReplyDeleteTears in my eyes, so wish I could give you a hug in person. Sending cyber hugs instead, although not the same. What an amazing group of young men you are raising. Sending prayers everyday up for you.
ReplyDeleteYou are so amazing. You and Ryan have raised four so wonderful boys.
ReplyDeleteThis morning when I read your blog, tears falling, Pyry came to the room. He gave me a long comforting hug. I am sharing that hug with you.
xo
This is a beautiful post, Meri. xoxo
ReplyDeleteBless those boys...and their mother.
ReplyDeleteAgain, I find the tears inevitable...my heart stings at the image of you fighting with those sets...and yet bursts at the image of J instinctively stepping up to take on a new role.
I love you and your family, and pray for peace on the road ahead.
Meri... I have extra sets... Can I mail them to you? As usual I am humbled and weeping for you and your boys. Prayers for steady hands and a family peace. Hugs.
ReplyDeleteI wish I could hug you all...that little J. What a sweetheart. All if them! So. Sweet. You are always in our prayers, my little Emma never never misses a night of praying for you. I wish we could do more, but I know our prayers are heard and answered so pray I will!
ReplyDeleteMan! I wish we lived next door to each other. I would help. Anyway I could. Just help..,sorry it was such a shitty day.
ReplyDeletei think it's part of the process to show the boys these meltdown moments. it teaches them they can break down too and get on with it when they're done. big love to you all.
ReplyDelete