And What Do I Tell Her Now …
In 1975, I was blessed with my first baby. A tiny little lady - all of 5 pounds, 7 ounces - with eyelashes so long that they touched her eyebrows.
For such a cute little rascal, she sure gave her mother some pretty rough moments as she was growing up. It became apparent that if there was something she could get into, hurt herself with - she zeroed in on it with unerring accuracy.
We were visiting friends in Alabama when she was about 2. We had found a wonderful Chinese restaurant, and I was looking forward to digging into one of my favorites: a Pu Pu Platter. The little waitress brought the condiments out, and set them on the table within everyone’s easy reach: sweet and sour sauce, duck sauce, hot mustard …
With mischief in her eye, my tiny daughter’s pudgy hand darted out, and before any of us could react, had grabbed the spoon from the hot mustard, and stuffed it into her unwary rosebud mouth. Within seconds her little eyes looked like wide blue marbles, as she sank back into the seat, gasping for breath! We were sure she was goner!
Her uncanny proclivity for getting herself into “situations” only became more pronounced as she aged.
By the age of 6, she was a skinny little kid - in constant motion. She was a blur of endless activity and sound. I used to threaten to duct tape her to the ceiling … but we both knew she was safe: she could outrun me! ;o)
One summer evening, my heart slid down to my toes when a horrendous screaming began in the farmyard. Deneen. Screaming. Again. What this time? I strode to the door, realizing as I went that the screaming was approaching the door from the other side. It opened before I could reach the threshold, and there was Dena - looking terrified. Her grandfather had her in his arms, and a quick glance made me realize that he looked pretty scared, too. He quickly made his way over to a chair, and set her down so that we could look at her. As he did, he explained that she had tried to “belly up” onto the loaded hay wagon, slipped, and fallen underneath; the several ton wagon had gone over her leg before anyone knew what had happened. The poor kid had very badly broken femur - up near the hip.
This one was not going to be as easy to recover from as the mustard had been …
But through all of this, I had always been able to tell her that things would be OK. The doctors would fix her, the nurses would take care of her … everything was going to be OK. It looked pretty bad, but even this time, everything was going to be OK.
I worried that this would not always be the case, however. With my everpresent fear in mind, and much anguish and wringing of hands, we tried - uselessly - to impress on her that she needed to be careful, and to think before acting! We would frown direly, and predict in solemn tones that there could come a day when she would do something so awful to herself, that the doctors wouldn’t be able to fix her anymore.
I don’t think she ever really believed me. I don’t think I ever really believed me.
She somehow survived into adulthood … had a lot of problems getting there, but she made it. She got married, started a family … and now has two little boys who are an awful lot like she was. Although she has her hands full with her two little monkeys, she’s decided to go back to school for a degree. At the age of 30, her life is finally coming together …
Or it was …
Last fall, she went to the emergency room with severe abdominal pain. There was a lot of back and forth, and no one really knew what was wrong for a while, but her pain was so intense that she persisted in trying to find someone to help. About a week before Thanksgiving, they diagnosed her with Crohn’s Disease. She spent the week in the hospital, and was only discharged on Thanksgiving Day - at which time, she marched right over here, had Thanksgiving Dinner, and tried to go on with her life.
Easier said than done.
Now, she’s struggling with two very active toddlers, managing somehow to maintain a 4.0 at college … and the entire time, she’s in relentless pain. Close to discouraged tears, she called me and said, “Moof, the doctor sent me to the emergency room, and when I got there, they were rude, and harsh, and acted as if I was lying to them! They didn’t believe that I was in pain - even when I told them that Dr. ________ had sent me there!”
Well, here it is. It’s finally happened. The time that I told her could come - when the doctors couldn’t “fix” her anymore. But this time, she’d done nothing to deserve what was happening … the Crohn’s, the pain, the doctors who don’t know her, and think she’s a “seeker” …
Trying to speak calmly and quietly, I explained that they couldn’t keep giving her the pills that actually took the pain away … because they’re addictive. I squeezed my eyes shut tightly against the look that I knew must be slowly crossing her face as I went on to explain that the doctors who don’t know her - think she just wants narcotics …
Silence echoed across the phone lines as the awful realizations sank in. In those long helpless moments, I waited for some word of encouragement to creep up from that big empty place inside, some little offering I could give her to at least ease the emotional part of the pain which had to be washing over her …
… I thought of my little girl with the broken leg, crying from pain, and my telling her to hang on, someone would help soon! Hang on! It was going to be OK!
Finally, in a soft voice, she broke the silence, “Moof! But - what am I going to do? I can’t go through the rest of my life in pain like this. What’s going to happen to me?”
What … what do I tell my little daughter now?
I wrote to my daughter, asking for her permission to post this. Here is her reply:
Moof…first of all, I’d like to say…I am sorry for having put you through all of that as a kid. I’d never *really* know what it was like if I had not had my own two “Denas.” Moof, use it as it is…if this can help, then I’ll be very grateful! And you’ll also show that Mama can still come through even when it doesn’t seem that way. I need to see that happen where I am in life right now.
Boof
May 25th, 2006 at 8:45 pm
That was a beautiful story. We some times wonder if they will grow up, safe and happy. They will always be our “kids” and we will always hurt when they do.
May 25th, 2006 at 9:05 pm
It’s hard to see our babies hurting. I think I saw a glimpse of what my mom feels when she watches me hurt (I’m not very patient when she tries to mother me over it either)
I will be praying for your daughter, and you.
Her childhood spirit will help her now, more than she realizes … I promise … as one wild child who’s fighting the autoimmune monster … I can promise that … the same spirit that caused her to fly at the hay belly up …will help her to fly at the crohns … and sometimes she’ll feel like she might miss and be falling under …but she won’t be ..she’ll be soaring more than she thinks she will be!
May 25th, 2006 at 9:53 pm
Hey moof had to look that one up, I have heard of it before but never really known what it is…. Sorry to hear shes suffering like that. I will keep her in my prayers. Poor thing. It is nice to know someone survived with a child that sounds very much like my own little cookie monster. It gives me hope that she will make it to adult hood in one piece:0
May 25th, 2006 at 10:25 pm
I wish there was something we could do for her… I feel bad.
Tell her Dae and I send our love and she’s in our prayers.
May 25th, 2006 at 10:34 pm
First I’d like to thank you all for your prayers.
I hope you’re right Peggikaye…if my ambitious spirit can help me through this. Perhaps once I’ve found some way to cope better I’ll be able to grasp life more fully and learn to fly again.
Wolfbaby, she mentioned that I have two sons who are VERY much like I was…perhaps worse. How old is your little monkey? Perhaps we can support each other somehow.
Even us wild ones grow up…mostly keeping our friends and family on the edges of their seats. But we get there with the love and devotion of patient Mummies…it’s the folks who have no one that I worry about.
Well, here is to hoping that something can be found that will help me out. I am more than open to questions and advice…and if I have a hard time swallowing anything good here, then I KNOW Moofie will do what Moofies do best…and make me chug every drop.
May 26th, 2006 at 4:49 am
That was sad Moof, and a little scary. My little daughter is a bit like yours, though not as reckless. She is scared of some stuff. But she already has more scars in her little arms and legs than boys of her age.
It is hard for parents to accept..
However responsible we are, we can only decrease the incidence of accidents. We have no control over diseases that the little ones’ bodies develop.
May 26th, 2006 at 7:36 am
Moof, I cannot imagine how you must feel. It must be one of the most painful life experiences to see one of your children in pain and be helpless to stop it. I also feel awful for your daughter. No one should have to live their life in pain.I am assuming she has contacted a Chrohn’s support group? Maybe talking with others who share this disease can give her some tips or at least a shoulder to lean on? How about a pain clinic out there? I know much is being done with hypnosis, acupuncture…it may seem a little “out there” but it just may be a possible alternative to narcotics.
May 26th, 2006 at 10:09 am
I was so touched by this……..
May 26th, 2006 at 3:03 pm
Baboof, My little cookie monster is 2 and a half sweet pea is only 7 months and I am praying on a daily basis that she is a little more laid back then her sister (one can only hope:) Moof has a link up to my blog I finally got pics up, believing and dreaming…I will be more then happy to trade storyies and show support in anyway I can…With our little monkeys we will both need it, sounds like!!!… Do you have a blog? moofie has my e-mail if you want to send one:) Your so lucky to have such a wonderful mom!!! and such a close relationship. Good luck to you and I will keep you in my prayers.
May 27th, 2006 at 9:44 am
Wanda, thank you for stopping in and leaving a comment. My mother used to tell me that it didn’t matter how old I got - I was still always going to be her “baby.” I think that’s true … I know it is for my own four kids. My oldest is 30 now, and my “baby” is 25. When they’re sick, I worry … when they make bad decisions, I worry …
No, I don’t think it ever quite ends …
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Pk - Thank you for the kind words, dear heart. And by the way - let your Mom mother you a bit, for filling her own needs, if not for your own … and I think you’ll both benefit.
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Wolfbaby, thanks! When they’re real live-wires you have to be hugely vigilant. There were a few years that Dena and my oldest boy and I were alone … and I was afraid to sleep. *LOL* Duct tape was realllllly tempting … ;o)
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Sarah, thank you Honey. It’s hard all the way around when someone in the family is hurting like that.
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Boofie, I almost fainted when I saw your comment on here. Welcome to my blog! Don’t be a stranger! :o)
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Thanks for coming to visit me, Dr. Scan Man! Yes, it is scary. If I were to make even a brief list of really hair raising incidents that my two oldest children got into, I’m sure that people would think I was writing a work of fiction.
All we can do is be vigilant, and hope that we can get them to adulthood intact - one day at a time …
Your little daughter is so cute - and looks like a real character! I bet you and “Mrs. Scan Man” have your hands full! ;o)
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Pattie, she hadn’t contacted any support groups, so I’m really happy you wrote all of that down. I’m sure she’ll look into what may be available in the area. About pain clinics, during the conversation I posted about, I did tell her to ask to be referred to our local “Pain Institute” … there’s got to be something that can be done for people who develop incurable illnesses that cause chronic pain. Thanks Pattie!
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Deb, thank you for stopping in and commenting. Your sentiment is appreciated by both the Moof and the Boof. :o)
May 27th, 2006 at 12:49 pm
I have a couple of friends in Canada who swear up and down that the reason that Canada’s child abuse rate is so much lower there is that the hospital’s issue duct tape and bungee cords in their baby supply kits when they send the mom’s home from the hospitals. ;)
That it’s government sanctioned … ;) … they are set on having a peaceful society, even if they have to get it by ductape and bungee cords!
(they ARE just kidding by the way)
May 27th, 2006 at 2:38 pm
As I read your words I couldn’t help but think of my own daughter and what the future holds for her, the conversations had, and the conversations to come . . .
(((hugs))) for both you and your daughter! I don’t know what to say, but my prayers are with you both . . .
May 27th, 2006 at 7:47 pm
ryc: Thank you!
May 27th, 2006 at 8:38 pm
Sorry you and the doctors can’t fix her. I know how she feels. Atleast she has a definative diagnosis. When you are in pain and there is no clear reason it’s bad, but what do you do when you are in pain? If you are in pain and there is a clear reason, but everyone thinks you shouldn’t be in pain what do you do? Next time I’ll just try to live through the pain…but I don’t look forward to it.
May 28th, 2006 at 12:33 am
Pk … duct tape and bungee cords! Sounds great! I know that duct tape will fix anything! ;o)
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DP … thank you for stopping in and leaving a comment, and for the encouragement. How old is your little daughter?
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Emmy, thank you for visiting my blog and leaving a comment. Please don’t be a stranger.
I’m sorry that you have been through the difficulties that you mention. I sincerely hope that, the “nex time,” they are able to find what is causing the pain, and take care of the problem itself. *comfort*
May 29th, 2006 at 11:19 am
I have nothing wise to add. I sit here this weekend studying for an exam the week before finals in my nursing program…AND am frustrated that no one got back to me before 5 p.m. Friday with news on 3 ultrasounds. I haven’t blogged it yet, but my ARNP found a pelvic mass and says I will likely need a CT scan, probably surgery. The frustration that I am sitting all weekend, helpless as the result sit read somewhere, but not one called the ARNP to call me. It’s a vulnerable feeling to not feel “helped.” I am glad your Boof has YOU.
May 29th, 2006 at 11:20 am
P.S. Found you via Flea and am linking to you. Great blog!
May 29th, 2006 at 12:29 pm
I just found your blog, and the first entry I read (this one) really touched me. Not because I am a mother and I can totally relate. In fact, it made me see how a mom reacts when her child gets hurt. I know my own mother went through the same emotions with her daughters, especially me, when I was diagnosed with Crohn’s at the age of 10. In those 10 years of living with this disease, both my parents have gone through a rollercoaster of emotions. Sometimes, just knowing they are there, even if they are silent, is enough to ease our pain for a moment. The first few years are the worst, but your daugther will gain control of the situation. She’s lucky to have you, I know it.
Best of luck to her,
May 30th, 2006 at 9:00 am
When I was in medical school one of my very first patients had Crohn’s. I spent the better part of an hour listening to that woman tell me over and over how much pain she was in. Then I went out to present the case to my attending. Without having examined the patient, and after listening to me for about 2 minutes, he said, “Crohn’s doesn’t cause pain. She just wants narcotics.”
This guy was a gastroenterologist.
I don’t know what you do about people who refuse to listen to patients. I meet these kinds of doctors all the time, and all I can say is that it puts a real barrier between me and them. I just can’t respect them, and I don’t. It makes it hard to get along with my colleagues sometimes.
May 30th, 2006 at 4:43 pm
Wow Dr. Mchebert! That is EXACTLY what I’m dealing with…….. Like my Mother says… They think I’m a “seeker”.
Now I think I’ve developed fistulas…(how ever it’s spelled). I don’t know how any Dr.’s could think that a persons whose own body is building, or chewing rather, holes and forming tunnels to other organs is NOT painful! All I know is that now, and never before, have I been in so much pain…more so during menstruation then ever…and the bleeding never stops. I load up on Midol because that is all I can get anyone to let me take. I honestly, seriously hope and pray this Crohn’s stuff has not riddled holes in my reproductive system!
Baboof
May 30th, 2006 at 7:33 pm
Hello Moof, I’ve just stumbled upon your wonderful blog through GrandRounds.
As someone who became disabled after a fall in my late 20’s and continue to have chronic pain in my early 30’s I would like to pass along to Baboof to hang in there!
Most docs are too busy, some are too self-absorbed and a there are those who should not be aloud to practice medicine. Unfortunately even the good docs tend to have a biased belief that when a Young Female with Chronic Pain walks in that they must be imagining their symptoms and/or seeking drugs. I’ve been through the being-treated-like-a-junkie phase and it hurt deeply.
My best advice is to stay current on your condition(s), get copies of and keep organized medical records, and bring someone in with you to EVERY appointment. Lastly, try to keep on smiling and laughing. Do not let them take that away from you.
All the best,
Gimpy Mumpy
May 30th, 2006 at 10:09 pm
Hannah! Thank you for dropping in and leaving a comment. I read it with a bit of consternation though … I was in exactly the same position just over a year ago. *comfort* The waiting is always the worst, Hannah. Knowing, even when the news may not be what we expect, is easier, somehow. Let us be there for you - however it turns out. Please - let us know!
Have gone to your very interesting blog, and blogrolled you.
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Marysienka, thank you for visiting me and leaving a message. I’m so sorry to hear about the Crohn’s … that’s got to be very challenging for you. Thank you for the kind words. I know that my daughter will take them to heart.
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Dr. Hebert … it’s so good to “see” you! You know, your comment left me feeling at peace … although it wasn’t a “peaceful comment.” It was the idea that someone out there does understand, and cares … you know, sometimes, not a lot more than that is needed …
Thank you, my friend!
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Dena … hang in there Honey. Could be that something else is wrong in that department, you know. It may not be related to the Crohn’s. *comfort*
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Gimpy Mumpy, thanks so much for visiting me, and telling me a bit about your journey … and for the wonderful advice you left for us. It sounds as if your own journey is quite a challenge. I have a feeling that you have a lot of wisdom to share. :o)
June 2nd, 2006 at 1:58 am
Boy, this post sure hit home.
Even when they are adults we can’t make everything okay. But her personality sure shows in her not only living her life but in striving for her college degree.
She’s a strong woman.
And the stories of the ER make me so angry I could scream.
Crohn’s doesn’t cause pain? Where the hell did they go to medical school?
July 5th, 2007 at 8:32 pm
[…] in May of 2006, I wrote about my daughter, and her struggle with Crohn’s Disease. Unfortunately, the last year has not been kind to her […]