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He can now remember.

Monday, January 17, 2011

Oh man, my heart broke tonight. 

I took Bennett last week to have his blood drawn to test for a milk allergy.  We are at the cusp of beginning the weaning process from the elemental formula he's been on since 2 months old to Pediasure.  The nurses at the Pediatrician's office poked him a few times before they came out and said they couldn't get it to work.  They offered me the option to go upstairs to the nurses who draw blood all day to let them try or just wait and come back tomorrow.

Knowing that Bennett was going to have to go through this again one way or the other, I decided to just get it over with.  My hope was that my decision to let the nurses upstairs try would speed up his pain.  But after two more tries, even they couldn't do it.

So, I was forced to take him home and bring him back.  My heart sank.  I hate having to subject him to poking and prodding.  I know it's important but so much is so difficult to handle.  He's constantly poked and prodded by the doctors and nurses.

Nonetheless, we woke up this morning and went straight to the clinic's nurses upstairs in the building.  These nurses know us.  So, before they even began, they called for backup.  "Bennett is strong," they laughed.  "I know.  I hear that all the time," I replied.

It usually takes 3-5 nurses to hold Bennett down, poor guy.  I have to step out, though.  I feel like such a schmuck to hand my innocent baby to strangers and slither out of the room each time.  But it's the only way I can keep my composure time and time again - and it's the best way I know how to help Bennett feel safe.  I get to play the roll of "rescuer" and "comforter".  He knows when he's in mamma's arms, he'll be ok.  (Too bad that works against everybody else.  The opposite of that is when he's in someone else's arms, he knows there are no guarantees.)

After only one or two pokes, they were able to draw the blood they needed this morning.  Bennett didn't fight quite as hard as he did days ago.  He seemed a little more resigned to what was happening.  I was just glad it was over fairly quickly.

But, to my surprise, later this evening while changing Bennett into his pajamas, I heard Brian comment to Bennett about his band-aid.  Brian said, "Oh look Bennett.  Is that your band-aid?"

All of the sudden, I heard Bennett just begin to wail.  Brian swore he had done nothing other than merely point out that Bennett had a band-aid on his arm. 

So, I tried the same thing a bit later after Bennett was calm and distracted playing.  I just commented on his band-aid.  I didn't touch it or anything.  I just said, "Bennett, where's your band-aid?"

Poor little one let out a little whimper and then looked to his left arm before letting out a terrible cry




It broke our hearts.  He's only 15 months and yet he seemed to indicate that he definitely associated that band-aid with a horrible experience.  This was no little "it hurt" cry.  This was a terrible "please don't make me" cry.

As matter of fact, during the rest of the night, on and off, without being prompted, Bennett would actually come to me and whimper.  Then, he'd hold up his arm to show me and begin to cry.  It was as if to say, "mom, do you know what happened to me today?  It was just terrible."

All I could do was just hold him and tell him everything was over and would be ok.  Each time he did this tonight, he would curl into my arms like I've never seen him before.  Head on my shoulder.  Limp little body.

It felt wonderful to comfort him.  I appreciated the opportunity to tell him over and over that it would be ok.

But it felt horrible to know that he "knows" now.  He's no longer a baby.  He's becoming a little boy - with memories and definite associations.  And as if it wasn't hard to see him in pain before, I'm quite certain it's going to only get worse from here.

I have often wondered how parents of chronically sick young children (such as childhood cancer) deal with these sorts of things.  I guess I should remind myself that I am now one of those parents.

Fortunately, there are Child Life Specialists out there that I can reach out to...in fact, I know one at my church that I will email tonight.

But my heart's burning question tonight is, "how do I help my child cope with the consistent poking and prodding when he doesn't understand why people are hurting him?  And how do I teach him to trust when it might seem to him that everyone around him betrays him?"

Those are good questions.  But maybe my heart has a more selfish question yearning for an answer: "How do I, as his mother, cope with the fact that, in order to keep him well, I have to subject him to constant poking and proding from medical staff?"  And, an even deeper question I struggle with is, "How am I going to survive a lifetime of seeing my son being hurt over and over again?"

9 Responses to “He can now remember.”

  1. Oh Breck, even seeing Bennett's picture in my blogger feed brought tears to my eyes. I knew where this post was going even before I read it. My heart breaks for you and Bennett and I know exactly what it's like. I wish I had the answer for you. I wish I had the answer for myself. I wish I had the answer for our boys. CF just sucks, there is no way around it.

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  2. My only comfort is that this is the only life Sara knows and I will do anything to help her through it.
    My first child was born with cleft lip jaw and palate and has been under the knife 4 times. She is 10years old today and feels very special when we go to the hospital and others for controls and such. My hope is that Sara will get the same feeling of being special when she is off to her controls and treatments. Only.. Sara's trips to hospital and other places is every 4th week plus plus while Otilie's controls are once a year.

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  3. Even after 7 years of dealing with this, it still bothers me a lot to have my son get blood drawn. Fortunately, they have a thing called J-tip that injects lidocaine into his skin before he has to get an IV. Sedation for PICC lines is nice ... sorta. Azer says that cold spray stuff does nothing. It's harder for them to get blood when they freak out, I've heard. But, it tears me apart when they have trouble.

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  4. Totally get where you are coming from. Aidan is 6 now and I hate to admit it, but it is brutal. Aidan is smart and intense and hates CF with a passion. I pretty much get tears everyday now from him why 'god would do this to him'. He has had 6 PICCs, 7 sinus surgeries and is probably getting a port next month. I feel sick about it, I don't know where to get the strength anymore. I try to make the rest of his life so awesome and it is...but sometimes the CF part just doesn't make up for it. I pray for all of us that a cure or control is coming soon. Our boys need it. Prayers for Bennett and your family.Megan
    www.caringbridge.org/visit/aidanneville

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  5. Poor baby! That series of pictures - the recognition, the wimper and the wail. So sad :(

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  6. Have you gotten the results of the test back? I have a milk allergic little girl so if I can be of any help please let me know!

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  7. wow my heart is broken looking at these pictures! what a precious little boy! it is obvious he feels so safe with y'all. I am so sorry! poor bennett- but you are SO cute when you cry!

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  8. :( sweeet, precious boy. he is so loved, Breck and he does know that. hug.

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  9. I wish I had an answer for your question - but you know there is no answer here on earth other than, "God will Provide for your every need - not just once a day but over and over and over again - as many times as you NEED, He will MEET that need in abundance. How does He do it? I do not know. But I do know that He does - and you know it too. In the times when all is going well and test results are great - you know God is there with that Provision. When your heart is breaking because your baby is distraught - you know God is there with en even greater measure of Provision. My heart hears Isaiah 40:29-31 for you today - especially v. 31. "For they will mount up with wings as eagles; they will run and not grow weary; they will walk, and not faint." God IS our STRENGTH.

    I love you and your family so much, Breck, and you are always in my prayers. <><

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