02 February 2011

Learning To Cope

I haven't really written about how I felt in the hospital last week. I just haven't even had the emotional energy to want to think about it. But I need to. Because, the reality is if I don't deal with it now, it will only build up on itself and come out stronger next time.

Bennett is not even a year and a half old and he's endured three serious hospitalizations and two invasive surgeries. This does not count the numerous blood draws and other tests he has to go through on a routinely when we follow up with the doctors at clinic.

It's all getting to me now. Bennett is older and wiser. He will often begin to cry the minute we walk into the exam room or a nurse walks near him to say hello. Over and over this happens and over and over I must play the role of strength.

But last Thursday, during his barium x-ray, I just couldn't do it anymore.  We had been at the hospital a day and a half.  I was becoming exhausted.

We came into the x-ray room. The technicians were very friendly and explained the procedure would take about 15 minutes. I was to hold Bennett down with his head upside down to me. It would be fairly fast and painless.

I should have followed my own rule that I wouldn't hold him down. But everything was so new to me so I just did as I was told without thinking.

The technician took off his diaper and inserted a long red plastic tube in his rectum. I literally wanted to tear my clothes off and trade places with the poor child. I knew that I could handle it better than he could. I remember feeling such an urge to change places with him.

It took three of us to hold Bennett down. In went the red plastic tube. It was obvious that Bennett was uncomfortable. He had no idea what was happening or why. All he knew was he was lying on a cold white table while someone was pushing something inside an exit-only zone on his body and it felt horrible.

Within a few minutes, the technician had taped the tube firmly to his bottom so it wouldn't come out. The other technician began pumping contrast through the tube so that it would show up on the x-ray.

Poor Bennett had C.Diff. so he was constantly pooping.  It was a surprise the red tube stayed in as long as it did.  But after about 10 minutes, the tube came out.  His need to poop ended up forcing the entire procedure to be completely repeated.

The technicians cleaned him up and gave him to me in order to give him a few minutes break.  But after a short period, I had to lay him down on the hard x-ray table to go through the procedure again.  It was heart-wrenching to do.

He just screamed and wiggled.  His face was red.  His eyes were dripping with tears.  I tried to comfort him but felt so helpless.

At one point, I remember vividly thinking, "what am I supposed to do? what am I supposed to say to this child? I can say, 'it's ok' only a few hundred times...He can't hear me sing to him over his own screams....I can hardly look him in the eyes because it hits me in the gut every time I do so....He doesn't want me to explain what's going happen next because he doesn't even know what I am saying. What do I say to him? What do I do??"

We started the procedure again. Again, I watched the technician work to place the enema into Bennett's rectum. Again, Bennett squirmed and cried hysterically. I knew it wasn't painful. It was just uncomfortable and incredibly scary, I'm sure.

I felt like Bennett was looking through his tear-filled blue eyes asking me, "Mom, why won't you help me?!?"

I could feel myself get weak. I just wanted to let go of him. I was physically struggling to hold him down and now I was wearing thin emotionally. It was like the sand was giving out to the waves little by little. I knew my house was going to crash into the ocean soon.

Just then, the red tube came out again. We were faced with repeating the procedure once more. A procedure that was supposed to last 15 minutes was lasting what felt like double the amount of time.

I asked the technician how much more time it might take. He said they were almost done. I explained I already was.

I asked for someone else to take over. I needed a break. I knew I could hold him down no longer.

A sweet brunette woman came over to help. She held him and I stood next to her as the procedure began again. I had no words to say anymore. I still felt so helpless. Nothing I could do would really make it better, I lamented.

The lady holding Bennett down began to sing the song, "Hush, little baby, don't say a word, Mama's going to buy you a mockingbird..."

That's when I fully lost it. Her sweet voice did not calm Bennett but it calmed me. I could not hold back my tears anymore. I wanted to reach between all the hands holding my baby down and scoop him up. I wanted to put his clothes back on and tear him out of the room.

Instead, I put all of my focus and strength into connecting with him. I found words again, "It's almost over, baby. It's ok. They want to make you all better." I began using my freed hands to caress his face and brush back his hair.

Nothing really changed. Bennett screamed through the entire thing trying to claw himself out of their hold. But I had been released to focus on caring for him and, in doing so, I had been released of the hold the procedure/anxiety had on me.

It felt like only moments later that the procedure was done. Bennett was cleaned off and I was given permission to put his diaper back on. I grabbed him and wrapped him so very tightly. He put his head on my shoulder and I loved that feeling.

I realized then and there that I have to find a way to make it through this. Cystic Fibrosis is a very very long road. I realized I am going to have to learn how to navigate through helping my child cope with these procedures and his relationship with the medical community. And I know that the first step towards my being able to do this is getting my own foothold on what's going on.

Within hours of Bennett's procedure, I contacted the Child Life specialist at the hospital who had a few things she could offer me. But I realized I need more.  So, I am on the quest to learn how to help myself and help my son with all of this.  I can't prevent the poking and prodding, the procedures and tests.  But I can better learn to cope with them...


  1. From my point of view, it has gotten slightly (slightly) easier as my son has gotten older. Because of everything our CFers have to go through, Azer seems to have insight and maturity talking about different procedures. He only gets anxious or nervous about blood draws while he sits in "the chair". He is good at changing the subjects to try to change the atmosphere.

    But, saying that, last summer before he got his G-button, he had to have an NG for a swallow study? I don't remember what it's called. He had to swallow lots of barium so they could make sure his stomach was anatomically correct. He just couldn't drink enough or fast enough. So, they had to put a tube down his nose and into his stomach. He started to cry and cough and gag, and the harder he cried, the more I could feel it in the pit of my stomach. I think it helped later after it was over to have him tell me how it felt, and how much it sucked. But, everytime I drove the 30 minutes from the hospital to go see my daughter, I cried the entire time. It is the hardest thing to see him suffer.

    Last month, I changed his button for the first time. I was not really nervous about it. He started crying out of fear, but I was calm and collected and my daughter was as cool as an ice cube about it (totally gross though). I pulled the button out, and didn't waste any time about putting in the new one, but for that brief moment I looked down at his stomach and it hit me, "My son has a hole in his stomach ... and it's my fault ...I put it there". I cried about it later, of course. Why didn't God give us a switch to shut off emotions temporarily?

    It's great to hear he isn't stooling 10 times a day so far! Ugh! Brings back memories of buying boxes of diapers on a daily basis!! Come on Bennet! Keep those diapers on honey!

  2. Wow. I have felt a similiar motherly pain that you went through multiple times during that procedure. You explained it beautifully and it pulled at all the same emotions I have felt in similar situations. It's so hard as moms to realize that we have to "allow" other to "help" our children even though it cause them fear and anxiety. I don't think I will ever heal myself but will find way s to make it through. Thanks so much for sharing.

  3. Posts like this one always break my heart for Bennett and for you. I feel totally helpless because I so wish I could "do something" to help alleviate the hurt and I'm frustrated that there is nothing physically I can do - other than pray. Prayer is the most tangible gift I can give you. Thank you for sharing your pain so we know how to pray. <><

  4. Oh Breck, I wish I knew what to say. I've had to hold Caroline down for blood draws and catheters (all before she turned 1), and it's so very heart wrenching to watch them look in your eyes in pain and confusion. Know that we're all praying for you! Thank you for the reminder that this isn't just Bennet's journey, but yours as well. Blessings sweet friend, and we'll be praying this is the last time you'll have to go through this for a while.


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