Reining in negative thoughts about your child's potential medical diagnosis

[Mabelen]

I am really trying not to panic, but one of the potential diagnosis is one that runs in my family and that has taken several of my family members through the years. We have an appointment with a specialist on Thursday. I am not particularly religious, more of an agnostic. I sometimes would like to have faith but deep down I doubt the existence of a divine being.

 

UPDATE:

 

All is well. I feel so relieved! The specialist put my mind to rest that it is something that can be fixed/managed well and with minimal impact on my daughter's health.

 

I feel so grateful to all of you who replied and helped me. Wishing you all the very best, from the bottom of my heart.

[ThisIsTheDay]

(((Mabelen)))

 

How scary to have to wait to find further information, most particularly when it involves your child.  I am praying for good results, and I'm praying that God reveal Himself to you in ways that leave you with no doubt as to His existence and of His unconditional love for you.

 

 

[Pawz4me]

:grouphug: :grouphug:

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

 

So sorry!  Is there anything you and your family could be doing for the next few days that would be fun and keep your mind off things?  Something to keep you physically and mentally busy?

[Annie G]

:grouphug:

[mommymonster]

I have a son with a brain tumor and he gets MRIs twice a year. The weeks surrounding MRIs are particularly distressing. The only thing that keeps me sane is to go into overdrive in cleaning, doing simple household repairs and upgrades, and basically planning for the worst. I buy easy meals and put a few casseroles in the freezer. Scheduling only easy things to cancel. Getting together with people who are close friends (I don't want to work on cultivating new relationships when this distressed). As a family, we don't make big decisions around MRI time. Also, I let me close family know about MRI time, as they may be asked to take care of one son if DS2 is hospitalized. If the diagnosis might require immediate treatment, consider talking to a support network.

I'm sorry your family is going through this.

 

Edited grammar because I type horribly on my cell phone. 

 

 

[OneStepAtATime]

I have a son with a brain tumor and he gets a MRIs twice a year. The weeks surrounding MRIs are particularly distressing. The only thing that keeps me sane is to go into overdrive in cleaning, doing simple household repairs and upgrades, and basically planning for the worst. I buy easy meals and put a few casseroles in the freezer. Scheduling only easy things to cancel. Getting together with people who are close friends (I don't want to work on cultivating new relationships when this distressed). As a family, we don't make big decisions around MRI time. Also, I let me close family know about MRI time, as she may be asked to take care of one son if DS2 is hospitalized. If the diagnosis might require immediate treatment, consider talking to a support network.

 

I'm sorry your family is going through this.

:grouphug:  :grouphug:  :grouphug:

[Crimson Wife]

The way I look at it is this: either the thing is there or it isn't.

 

There is a 6% chance that my little one has a genetic condition that will leave her not just hearing impaired but also will cause blindness starting in her teens. We won't get the results of the genetic testing for several months. Her DNA is what it is, and worrying won't change the results.

 

I do want to know whether she has the condition because if she does, it will mean she should learn to read Braille and not spend a lot of effort learning American Sign Language.

 

Prayers/good vibes to your family!

[Lang Syne Boardie]

What mommymonster said, about being gentle with yourself and the family around appointment times and DEFINITELY around hospitalization times, and arrange for backup childcare or whatever you know you'll need...

 

to be entirely honest, as much as my faith and my relationship with Jesus Christ is a bedrock part of who I am, during the worst and most of it I tied into people. I prayed every day, and I felt that the Lord was with me, but that was a touchstone, internal thing that was separate from the eye contact, hugs, and sharing with the actual humans on the ground.

 

Tie into everybody who seems at all worthy, even if it's just for a fleeting moment of eye contact with humanity as you head into the next moment, even if you'll never see them again. Doctors, nurses, medical staff, other parents if you're in a children's hospital, your own closest people who will come and sit with you. If Jesus shows up, it'll happen through people. And the tangible comfort will come through people; don't press yourself to believe farther than that, but stay open to whatever is comforting to you.

 

As far as the ongoing fears that spring up, the 'what ifs', those are never going to go away for my son. Never. I know now that he could leave us at any moment, and sometimes the anxiety that arises over that thought is overwhelming. I deal with this rationally when I can, telling myself, "This is anxiety. None of us have any guarantees. Nobody else is safer, nobody else is going to go through life without illness or injury. This is anxiety getting to you in this moment, and you have options. Cry. Scream. Fight. Call a friend. Assess how paralyzed and sad you are becoming, and whether you need professional help. Also, there are pills for this. They can even put you in the hospital if you're really on the brink. Call it what it is - anxiety- and see if you need somebody."

 

Believe it or not, that actually works for me. I usually assess it as "horrible but manageable," watch something stupid yet hilarious on Netflix or take a bath or just go to bed, knowing that I'll have non-scary times again tomorrow. Big, gasping choking crying is part of my reality now. Periodic depression is part of me now. I deal with it, wait for it to pass, and go on. My own line in the sand is that if the feeling ever lasts into the next part of the day I will get help. For example, if I'm having a horrible night, if I'm not OK when I wake up in the morning I will make the call. If I'm having a horrible morning, if I don't rally and enjoy my family and life by late afternoon or evening, I will call the next day.

 

I don't often see things the way others do, but I hope something in here is helpful, and I hope your child will be well. :grouphug:

 

 

[fairfarmhand]

So many mamas and so much hurt. Big hugs and prayers, strength and rest for all of you.

 

May you find the grace to live in this moment and not let the fear of the unknown rob you of today's joys. (That last sentence is one prayer that I prayed when my mom lived with cancer for 12 years before her passing. I can't imagine going through it with one of my babies.)

[Mabelen]

Thank you so much for your replies. Part of me feels stupid because we don't have a diagnosis. All my worry might end up for nothing. I do really hope so. I am not sure if the specialist will be able to rule anything out this Thursday. I am thinking there will be a need for futher testing, we shall see. I will try to keep as physically and mentally busy as I can and to have fun with my family in the meanwhile. A support network is definitely a good idea. I am meeting a couple of friends for coffee tomorrow. I need to think of something fun to do after the specialist appointment. My dh is out of town and depending on what transpires I might need something to force me to keep a happy face and my mind occupied.

 

:grouphug: Hugs to you moms who are living this with your children. I really appreciate your opening up and sharing your own experience. You have touched me with your words.

[Whereneverever]

Mama, this sucks. The worry and what ifs are just plain wretched. There's times of dealing with it "well" and then there's times that I still lay face down on the floor and just howl-- and i'm years out from diagnosis. 

 

I'm so sorry. 

[Crimson Wife]

"Like" isn't the right sentiment so {{{hugs}}} to all the moms dealing with health issues on the part of their kids

[Crimson Wife]

DP

[mommymonster]

Tibbie most eloquently stated how I deal with the anxiety portion of my walk with DS5's illness. You do have to be honest with yourself. You have to check in with yourself. It is ok to get medicine if you need it. It is ok to ask for a pause if you need it (most of the time).

 

Mabelen, I thought of a few additional things that I wish someone had told me in the beginning. Obviously, I hope that your appointment consists of an "it's nothing, go forth and celebrate!" If things are less than ideal, I hope the following is of use:

 

On the days you go to the doctors for diagnostic things, bring an adult with you if you can find one. My husband and I drove individually to the doctor's office when DS was diagnosed. We didn't  realize why the doctor had called us, so we ended up with two hysterical people driving home to pick up DS and rush to the hospital. That was not safe.

 

On the medical front, it is ok to get second opinions. Don't worry about a doctor's feelings, worry about your kid's health. Your only job is to advocate for your child, and you should feel free to challenge anyone in the way. Make doctors explain everything to you, and if they do a crappy job, make them do it again. Doctors are generally remarkably intelligent people, but some have crappy people skills. 

 

I will admit to obsessively reading Dale Carnegie's book "How to Stop Worrying and Start Living" to the point of having the book almost memorized. I will read it again starting in about a week. It's a silly self-help book, but I find it immensely soothing. 

[Crimson Wife]

 

On the medical front, it is ok to get second opinions. Don't worry about a doctor's feelings, worry about your kid's health. Your only job is to advocate for your child, and you should feel free to challenge anyone in the way.

 

And if the doctor is professional about things, he/she shouldn't mind your getting a 2nd opinion. I was a bit apprehensive about showing the 2nd audiologist's report to the 1st one but she actually thought it was a good thing that I'd gotten the 2nd opinion. It was confirmation that her findings were accurate (particularly a concern in testing a child with autism).

[Mabelen]

I wanted to let all of you know how helpful and comforting you are. Tibbie Dunbar and mommymonster in particular, I can really feel that your words are coming straight from your heart and I feel your embrace, thank you so much for that. I will sleep a little easier tonight.

 

Big hugs to all the moms again experiencing health issues with their little ones.

[Melissa in Australia]

:grouphug:  :grouphug:

[Joyofsixreboot]

Mabelen~I hope all turns out well. I am so sorry you had to post this and sorry there are moms with answers but we are having some tests done on dd right now and this discussion couldn't be more timely for me. I'm freaking out a little on the inside. Everyone's kind advice is what I needed today so Mabelen and ladies know you've helped someone else too.

[Lizzie in Ma]

So many mamas and so much hurt. Big hugs and prayers, strength and rest for all of you.

 

May you find the grace to live in this moment and not let the fear of the unknown rob you of today's joys. (That last sentence is one prayer that I prayed when my mom lived with cancer for 12 years before her passing. I can't imagine going through it with one of my babies.)

 

Beautifully said.

:grouphug: :grouphug:

[Pamela H in Texas]

I'm going to read your thread in a minute.  

 

I'm struggling with this same thing right now, a potentially very troubling diagnosis  that will mean my sweet baby will continue to decline.  It is a spectrum disorder and the worst situations have the children dying as children.  I doubt his is that severe, but it is still sad to think of him having it at all and that complications of it will kill him :(

 

If you need to talk, please PM me.  Really! 

I"m going to go back and read the above.....

[Crimson Wife]

Prayers/good vibes to all the moms waiting for diagnostic appointments/results. {{{hugs}}}

[LostSurprise]

It is hard. I think it can be dangerous to pretend that its not. One thing I try to do is remind myself that it's okay to be sad. I'll have a good cry if I need it, then make a list or schedule and keep busy with the things I can do. Bottled emotion is the most dangerous. Prepare for the future if that gives you peace. Plan and do special things as a family. Do things you love together. Celebrate your child and your family. 

 

Exercise. Eat well. Get enough sleep. Take care of yourself. If you have a craft or art, consider taking it up again...or learn a new one. When your mind is racing it helps to have a handcraft that uses repetition (knitting/sewing/painting/scrapbooking) but also takes up some mind space to plan, remember, create. Because while emotion (sadness, anger, fear) is okay and transitory and a part of being human and having connections with people, playing the Worry Tape over and over and over in your head 24/7 can suck all the joy out of your life and all the people around you. Keep it simple right now. Focus on the little joys and contentments. Do what you can do. 

 

:grouphug:  I hope the time goes quickly and your child is well. If not, the world does not end. It gets harder, but the love and fun are still there. If nothing else you grab hold of it that much harder. You learn to love the little things. Your child is always your child. 

[Mabelen]

UPDATE:

 

All is well. I feel so relieved! The specialist put my mind to rest that it is something that can be fixed/managed well and with minimal impact on my daughter's health.

 

I feel so grateful to all of you who replied and helped me. Wishing you all the very best, from the bottom of my heart.

[creekland]

UPDATE:

 

All is well. I feel so relieved! The specialist put my mind to rest that it is something that can be fixed/managed well and with minimal impact on my daughter's health.

 

I feel so grateful to all of you who replied and helped me. Wishing you all the very best, from the bottom of my heart.

 

Glad to hear it worked out well!  (I had no advice to give, but love the update... ;)  )