Embracing Life & the Child with the Disease

E, not D, today

My "JOY"

So much focus is placed on our middle child, a miracle boy in more ways than one, the child with the pooped-out pancreas.  With all the HIGH maintenance care that Ryan requires, it’s naturally easy to place a lot of the daily focus on him.  It’s not ONLY counting carbs, checking blood sugars, feeding for lows, correcting highs, working in proper exercise, checking, ordering, grabbing supplies out the yin yang, and simply the incessant planning ahead for every minute (at least it seems like that’s what happens sometimes), it’s also the making sure he is emotionally and mentally content.  Making sure d doesn’t weigh him down, or at least keep that to a minimum. It’s a constant trying to stay on the up and up when those of us who care for the d-child can also become very discouraged by the numbers that don’t make sense, the regimen, the broken sleep, etc.  We’re acutely aware of how it affects us and do our best to guard that from our kiddos as much as we can for as long as we can. 

This focus on Ryan is proper, is right, is inevitable.  It is the life that was chosen for us.  And we are going to make the best of it.  We’re going to win as many battles as we can.  And we are going to strive to make sure Ryan never feels less than perfect because his pancreas is broken.  He is Ryan.  He IS perfect . . . he IS “wonderfully made.”

But last night, I dealt with so much worry, guilt, frustration and helplessness regarding my oldest boy, Ethan. 

E is an amazing child.  Much too “old” for his age.  He has been my buddie, my “JOY”, my confidante, my ONLY for five years and for a period of time, the only I thought I’d ever have.  And he remembers the miscarriages, perhaps not all of them because they all occurred when E was between ages 2-1/2 and 4.  But he distinctly remember one in particular . . .

I was miscarrying.  I was in a lot of pain.  We lived out in the country about 40 minutes from the hospital.  Jason came home from work to take me to the hospital where my OB/GYN was waiting.  Ethan was at home with me, not yet in school, so he came along for the ride in town too; my parents were already there waiting to take E when we got there.  I was crying.  I was talking to Jason and asking those hard questions like, “Why is this happening again?” “What is wrong with me that I can’t carry another baby?”  This was consecutive miscarriage #3 of four.  Totally oblivious to my little E buckled in his car seat in the back who all of a sudden, in a precious little voice said, “Daddy, is the baby okay?”  I completely froze in my tracks and fell totally silent.  Jason paused and replied calmly and explained as simply and with as few words as possible that the baby was sick and was going to go on to be with Jesus in heaven.  We awaited E’s response and after a few moments he said, “Is Mommy okay?”  I remember holding my breath trying not to literally go into a wailing episode.  He assured E that I would be just fine, the he was taking me to te doctor who was going to make me all better (at least physically).  Another long pause from Ethan.  Then he said, “That’s okay.  God will give us another baby.”  With elbows on my knees and my head in my hands, it was like someone turned on the faucet to full open spout and my tears nearly created a puddle in the floor of that old white Expedition.  Then that angelic child began to sing, “When I call on Jesus, all things are possible … ”

I tell you that to give you a glimpse of the child that he is, that he always as been.  He took Ryan’s dx pretty hard.  He longed to be involved.  He ached with all that Ryan had to go through, to endure, to adjust to.  He began sleeping with Ryan again because he was afraid and simply just wanted to be close to his brother at night.  He learned how to take his blood sugar, to give shots, to treat lows, to ride bikes or play soccer when Ryan was high to work his sugar down.  Then when the pump came along, a year after dx, he wanted to know the ins and outs of all of that too. 

We encountered a pretty big hiccup with Ryan’s care during a consistent activity the boys are involved in.  It’s an activity they do absent of Jay and me.  It was an ongoing issue we were determined to work though.  The details are not as important as what it did for Ethan and Ryan.  When things went wrong again, after we thought we had worked out the kinks, Ethan stepped up and did is best to correct the situation.  As we were having our family meeting to get the boys take on all of it and work through it with them, Ethan was talking about what should have happened and wishing he had done more to make that right.  Ryan’s response, “I’m just glad I have a big brother who knows what to do and takes care of me.”  Yup, I cried.  I loved on Ryan for recognizing that he had a brother to be grateful for.  And I had one of my proudest moments with Ethan.  Without being forced, without being asked, he was stepping up.  And not ONLY was he stepping up . . . he was passionate about it.  He gets d.  He takes it on.  He loves his brother.  And he is so loved by BOTH his baby brothers that HE waited so long for too. 

But right now, Ethan is struggling.  He is in 5th grade.  He has had an incredibly tough year at school in a hundred different ways.  He is 11.  He is experiencing in full swing that dirty word . . . hormones.  He is by raw definition a “tween”.  And this is new and uncharted territory for me.  We are the same, he is simply the male version of me in personality and looks.  But he is so struggling.  His attitude is not always so good.  He is having trouble with mean kids at school.  He has outgrown (at least he thinks he has) anything “children’s” whether at church or at home or in life.  But he is NOT ready for anything teen either.  And he’s hard to please right now.  It seems at times, nothing is quite good enough.  He’s going through comparing his life to others.  And in all the negative he has going on, he really doesn’t want to be there but just can’t seem to snap out of it.  It’s the awareness of the mental battle to be happy and content when hormones are raging and he’s stuck between being the boy and the teen. 

Last night broke my heart.  I know he sees Ryan get sooo much necessary and needed attention.  I know he sees Aaron get the attention he needs and deserves because he is not yet very independent in a lot of what he does and he’s still the baby with the squishy cheeks.  And Ethan was just struggling last night.  We HAD to correct an attitude/behavior.  Nothing severe but too big to be overlooked.  And it opened the door to just talk about life a bit with him with Ryan and Aaron in bed.  He knew and understood the areas he’d been wrong.  And he also knew where he had been wronged by others and situations that needed to be fixed.  He went to bed discouraged.  And then I just cried. 

E's 11th birthday

I hated the realization that I not only had no control over d and all the inadequacies I feel there, but I also could not fix life for Ethan either.  I know mothering is not about fixing everything but boy it sure does hurt when we can’t and the uselessness feeling in it all.  Y.U.C.K.

I don’t ever want to forget or overlook or miss him in this crazy world of d that seems blanket everything at times.  He needs to feel just as special as Ryan . . . as Aaron.  He forgets all the attention he got when he was their ages.  How we ARE treating them the same.  But in all his maturity and “grown-upness”, his ability to wrap his mind around it all is still so limited. 

And I just don’t EVER want to lose sight of the fact that just because Ethan doesn’t need me to be his pancreas, he needs me just as much as Ryan does . . . and right now, maybe even more.


Comments on: "E, not D, today" (7)

  1. Your post made me cry… especially the miscarriage story. What an amazing son you have. I am so sorry he’s struggling right now. Obviously I have no advice and all I can offer is HUGS!

    P.S. thank you for all your sweet comments on my posts, your words are always so encouraging to me!

  2. Oh Amy- I’m sorry. I know it’s so hard.

    I have only one…. So I can’t fully embrace your feelings. But I can sort of relate to the attitude. When Sweets is high, she’s got attitude. She is mean. And I know it’s not her. I know she doesn’t like to be that way. But it’s hard.

    What a precious story! You had me in tears! You have some very special children! And I LOVE that you said they are “wonderfully made”! They are. Diabetes and all!

  3. I know exactly how your feeling. My oldest is the same age as E. She has been a blessing and knows more about D than most adults. But… she takes the back seat way too much and I feel so guilty about it.

    E sounds like an amazing young man… and with an awesome mama like you… he will be just fine 🙂

  4. Me too…with the water-works. My heart hurt for you and the family during those tough years Amy.

    You know, I can relate to this post about E. on so many levels. Bridget is in 4th grade…starting the “tween” phase – which she reminds me of ALL.THE.TIME. I am seeing moodiness. I am seeing a little ‘tude. I am seeing her flit back and forth between child and teen in her actions and reactions…as she transitions from one phase of life to another. It is hard.

    I too worry about her more than I do about Joe much of the time. I think the psychosocial stressors of “D” in the house definitely get to her as much, if not more, than it gets to Joe at this phase of the game.

    Love to you and yours.

  5. Melanie Ward said:

    And more tears, whew. My heart broke for you guys during those incredible painful losses. I understand the heartache. I can only imagine the flood of tears with the precious questions and responses from Ethan during that very difficult time. He is and always has been so special and wise beyond his years. I don’t have any advice as I’m not there yet with a “tween” but hopefully it’s a brief phase before the teen years. He is blessed to have such amazing parents to help guide him through this time. I’m sure it’s such a struggle for him with hormones going crazy and so difficult at times when D seems to take over and the attention has to be focused more on Ryan at times. Keep doing what you are doing in having those conversations, reminding him of your unconditional love, and then smother him with kisses (which I’m sure he’ll love in a few years) lol You may already do this but maybe take him out by himself once in awhile to do something he enjoys so he has some one on one time & attention with you guys. Sending hugs and prayers your way. Love you!

  6. He’s a beautiful boy cause he looks like momma. He’ll pull through this phase of life…..largely because of your hard work and motherly love sweetheart.

  7. My goodness! He does look like the boy version of you!

    I ‘ve been blog hopping the past few days and came across yours. My 7yo daughter was dx’d T1 6 weeks ago. What a crazy ride!

    I also have an older son that is 11, and he is much the same as your older…curious, wants to be a part of the solution, completely dependable when we aren’t around.

    My T1 daughter has a twin, so we are walking that line of making sure all three of the kids get the love and attention they need.

    Can’t wait to read more of your blog.

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