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My daughter's diagnosis and putting things in perspective

Emsmom1Emsmom1 1003 replies74 postsRegistered User Senior Member
As some of you know, my daughter has been on medical leave from college since Dec 2017 for anxiety and depression. This week we saw a rheumatologist that thinks she has Sneddon's syndrome, a disorder that causes small strokes in young people and eventually kills them. More testing needs to be done, but it does not look good.
My daughter's whole life, I have pushed education as the ultimate goal, and not subtly. My focus on her getting into a good college caused her anxiety, caused fights between us, and hurt our relationship. I wish I could take it back. I wish I could do it all over.
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Replies to: My daughter's diagnosis and putting things in perspective

  • HowardGradlyHowardGradly 156 replies6 postsRegistered User Junior Member
    Oh no Emsmom. You are correct about perspective. I do hope that you get a clear diagnosis and treatment plan ASAP. Hugs.
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  • HImomHImom 34099 replies389 postsRegistered User Senior Member
    Wow—that’s a very tough diagnosis! If urge you to get a 2nd opinion and hope you guys get a good treatment plan. Best of luck to you and your family moving forward.

    We all just do the best we can. I and both my kids have chronic conditions. We have made peace with it and just live the best we can with them. We have amazed our MDs, who have given some pretty grim predictions over the years.
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  • VeryapparentVeryapparent 866 replies16 postsRegistered User Member
    I’m so sorry. Sending light and love your way.
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  • conmamaconmama 4123 replies303 postsRegistered User Senior Member
    I’m sorry about your daughter, but I would definitely be getting another diagnosis if that’s what they determine. I’d get her to Mayo. You’ve done nothing wrong in stressing an education.
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  • Nrdsb4Nrdsb4 16808 replies156 postsRegistered User Senior Member
    Very sorry to hear this but second the suggestions to get a second opinion, especially since you have not received a definite diagnosis.

    You loved your kid, wanted what was best for her, and continue to do so. Don't be hard on yourself.
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  • kelsmomkelsmom 15525 replies98 postsRegistered User Senior Member
    I agree with all who say not to be so hard on yourself. We do the best we can, and that’s all anyone can ask of us. You love your daughter, and I am sure she knows it.
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  • ClassicMom98ClassicMom98 126 replies1 postsRegistered User Junior Member
    Hugs to you and your daughter. I have long wished for two things: that my kids were born with a manual, and a crystal ball so I knew the best course of action. Unfortunately, neither have been invented yet. All we can do is make the best choices with what we've got in front of us at that moment. You did that. Hindsight is always 20-20. Don't beat yourself up over the woulda, shoulda, could ofs. Keep loving your daughter, and keep doing the best you can. And thank you for the reminder to always hug our kids and family members. You just never know what will happen tomorrow.
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  • momofsenior1momofsenior1 6657 replies42 postsRegistered User Senior Member
    More prayers and cyber hugs from me too.
    You did the best you could, with the information you had in front of you. Another voice to not beat yourself up.
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  • katliamomkatliamom 12783 replies167 postsRegistered User Senior Member
    edited August 10
    My heart goes out to you. Please vent here, but stay strong and positive around your daughter. She needs you right now. Get a second/third opinion. Educate yourself. Find a support group - other parents going through the same, and perhaps a therapist who specializes in caretakers. All of this will help you navigate the choppy, unknown waters in front of you - and be an effective support for your child. Hugs.
    edited August 10
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  • gardenstategalgardenstategal 5494 replies10 postsRegistered User Senior Member
    @Emsmom1 , I am so sorry for your struggle. Cyber hugs.

    Pleas don't beat yourself up. You did what you thought was best at the time and you couldn't have seen this coming. With a different set of circumstances, it might have been perfect. Everyone goes through some version of this in parenting and in life, and none of us gets it all right.
    You need your energy and strength for both of you NOW, not directed into regret about what has passed.

    Talk to your D about your feelings. You can tell her you pushed her because you knew she was capable and you wanted her to have every opportunity. Tell her you are now regretting this because you feel like you wasted some of some of your time together. Tell her you love her and want to be supportive and connected and talk about how you can do that. This is a lousy situation but it may give you 2 the chance to change your relationship. Take that gift.

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  • twoinanddonetwoinanddone 22433 replies14 postsRegistered User Senior Member
    Really sorry to hear this, but don't have regrets. Many children with serious, even terminal, illnesses just want to be treated like all other kids and education is part of their lives. My kids had a classmate with cancer and she went to school until a week before her death. She wanted to be just like all other kids, wanted to learn. She played basketball even as she was doing chemo.

    Good luck. Hope you hear good news soon.
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  • SybyllaSybylla 3569 replies40 postsRegistered User Senior Member
    Has she had definitive tests?
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  • collage1collage1 1699 replies70 postsRegistered User Senior Member
    @Emsmom1, I am so terribly sorry about your daughter and it must be so hard for you. We, as parents, do the very best we can each day. Please don't beat yourself up. I hope the diagnosis is wrong but, hopefully, you can just be the best mom to your daughter now and not second guess what you you believed was the for the best in the past.
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  • CaMom13CaMom13 1819 replies12 postsRegistered User Senior Member
    Oh, @emsmom - what upsetting news! I hope the diagnosis is wrong. Everyone's already said what's true, we do what we can and we make the best decisions we can out of love for our children. None of us are perfect and none of us know which decisions we make today will look unwise tomorrow. My only advice would be to urge you to take this wake up call as the first step towards healing your relationship. Tell your daughter honestly how sorry you are to have built barriers between you two with your focus on college, tell her how much you love her and treasure the time you have with her now whether it's during stormy weather or calm. I've read so many times about people who only began to "live" and truly appreciate their lives after a major medical event. Most of us live our lives in a blinding fog. The perspective you have now is precious, hold on to it.
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