Sometimes Support Groups Suck

When there aren’t that many of you… people tend to find comfort in numbers.

 

There is a comfort that comes from knowing that someone else really “gets” you.  There is a serenity that comes from knowing that your friends can help you navigate a world of complex medical issues.

 

DSC_0124There is support in those numbers.  We love each other.  We grieve together.  We celebrate together.  We understand that life isn’t measured by years or days; instead – minutes…. moments.  Life is measured in moments.

 

But, sometimes support groups are not all they are cracked up to be.  Sometimes I feel that WHS is all around me.  Like the noose that suffocates me.  I just can’t break loose.

 

Maybe today… I don’t want to discuss deletion sizes and how it may or may not impact our kids.

Maybe today… I don’t care.

Maybe today… I don’t want to be reminded about all the scary dental/urinary tract/ kidney/ EVERYTHING issues.

 

It isn’t that I don’t care. We have those issues too.

 

But, just maybe – today … I want to pretend that we don’t. 

 

And yet, being a part of 4 WHS support communities and 4 other special needs communities – complete with notifications, e-mails, and updates, is sometimes overwhelming.

 

It tears at your heart. … to know so many people who have medical issues.  To read the fear of our friends.  It isn’t like a “real world” – where you know one child in the hospital… it is this medically fragile world – that can have numerous children in the hospital on any given day.

 

Sometimes it is us.  And we need support.  Sometimes it isn’t… and – it can be overwhelming.

 

Confession: I don’t want to look the future… positive or negative.  Because, the truth is – every child (with or without WHS) is different.  And one person’s reality is not ours.  Nor is our reality someone else’s.

 

Maybe today – I just want to be us. Family of 5.  

 

ps. I really hope our friends in our WHS community can understand the post of my heart. And thanks, Shell – for letting me share it.

 

Comments

  1. Emily says:

    I wandered over here from Shell’s… and I am amazed. Amazed at what an awesome, strong mother you are. I had never heard of WHS and I can’t even fathom what it must be like to have a child with this. It’s awesome that Alexander has the same opportunities as your twins. That he is progressing so wonderfully and that he is given a chance. But, I can definitely see how support groups can sometimes suck. It has to be draining on so many levels emotionally, mentally, physically…. We all need a break sometimes from our “normal” lives. Good luck to you and your beautiful family! I’ll be praying for you. :)

    • Kristen says:

      I’m so glad to meet you! And… thanks for all the words of encouragement. It is 6am and EVERYONE in this house is up – trust me, I needed them this morning. Thanks for understand that it is a little draining.

  2. Jessica says:

    While I cant say that I understand where your coming from, I do get that sometimes you just want to enjoy what you have without the worry. Praying for you!!

    • Kristen says:

      Thanks so much. You are exactly right… sometimes I just want to be “us.” But I feel guilty saying it.

  3. Jackie says:

    Kristen, I can appreciate where you’re coming from. Being inundated from what seems like every direction, surely would cause sensory overload. While I’m not in a similar situation, it doesn’t mean I don’t get it.
    Our emotions are our own, and there shouldn’t be any guilt associated with feeling any thing, even if it is a moment where you want to tell everyone to Piss off, and leave you be!

    • Kristen says:

      Thanks so much for the understanding. Seriously! I was worried that everyone would get angry. Thanks for reminding me that I can have feelings without worrying about who will get upset.

  4. Kim says:

    some might call it denial, I would call it survival! Life with a child with special needs is overwhelming. When you function with it 7 days a week, 24 hours a day- you could easily go out of your mind. I think it is healthy for you and your children for you to “act” like you are a normal family b/c in some ways you are. The twins need normal and I am sure they crave normal days just like you. I am learning to purposefully schedule days when we don’t have therapists, doctors appointments or anything else that can remind me of WHS. I need days like that when i can turn my brain off and just be a mom. So, today- turn off your brain to all things WHS- (cancel any therapists- gasp- did I really suggest that :) enjoy your kids, play with them, go for an ice cream treat and just be a MOM and a “normal” family.

    • Kristen says:

      Seriously- I needed to read this. Some support on “not getting support” from our group. Thanks so much. You are right. Sometimes I really do need to unplug.

  5. Shell says:

    It sounds very draining. It’s great to have the support but when that’s all that gets talked about, that’s not helpful.

    • Kristen says:

      Thanks Shell. I can’t reveal what is being said because everyone should have their privacy – but sometimes it is completely overwhelming.

  6. I have found that when I start feeling like you do that I need a break. I do that from time to time–just turn off notifications and stop reading updates. And when I go back, it is all a little more manageable. And you know what, everyone understands. We’ve all taken breaks. It is necessary for our mental well-being.

    Sending hugs to you.

    • Kristen says:

      Thanks. I think I need to start opting out of the notifications. But… then sometimes I feel guilty if I have a question – like I’m only around when I need support. I guess I need to let go of that guilt.

      • I find if I turn off notifications and return when I’m up to it, I can comment and give back when I can. If you are feeling guilty, you can also tell your support group you’re going off the grid for a while. They will understand. And if they don’t, they weren’t there to support you anyway. You deserve better.

        Another thing I’ve done is cut back to only a couple groups. For my daughter, I could be in a dozen different groups and have been at different times. Some I stay with because I’ve connected and the people understand. Others I don’t use, even if it means I don’t have people who know about one specific aspect. I got out of those because the people dragged me down too much. Being a special needs parent is hard enough. I had to find the best places for me. That changes over time.

        Good luck. And go easy on yourself.

  7. Karen says:

    I completely “get” this. My husband was recently diagnosed with bipolar disorder, and I feel every minute is focused on that. I actually had to get OFF some of the support groups I was going to on-line because they were filling me with dread. My best moments lately have been the times I’ve had normal conversations with people that let me forget. I don’t think there is anything wrong with that no matter WHAT the support group is for. Sometimes you just need time to be a family.

    • Kristen says:

      Karen – dealing with a recent diagnosis is tough. And… I know exactly what you are talking about – you get sucked into this hole of information. I’ve been down that path several times. Hugs to you. And… I’ll be around if you want to have a normal conversation. I need them too :)

  8. Oh that sounds so tough my friend. (hugs)

    • Kristen says:

      Somedays…. it is tough. Truth? I need them. Because they understand. But – I just continue to be added to new “caregivers” support group, “hugs” for so and so -support group, “secret” support group, etc. Overwhelming. Thanks for being here for me.

  9. Adrienne says:

    It seems like it would be draining to have that much a reminder I might not want today. I can understand that. {{{hugs}}}

  10. Jen says:

    I totally get this too!
    Support groups are two way streets you both give and receive support and comfort; which is there purpose and that makes perfect sense.
    But there is nothing better than to receive comfort than from within your own family!
    That’s the most natural place in the world to seek it and find it.
    Love!

    • Kristen says:

      Oh Jen – why is it that I can always count on you for a blog title that I have to read RIGHT NOW? Thanks for understanding… and recognizing that sometimes I just need to be “us” not – us with WHS. I’m off to read about your poster :)

  11. I think that most people will understand your heart! Talking can just sometimes be a burden!

    • Kristen says:

      Oh Sarita – I will tell you – the worst times I’ve had in forever have been when I couldn’t say something out loud. It weighs on my heart. I hope people understand and I don’t alienate them. Because I don’t mean to.

  12. Jennifer says:

    Kristen, I always appreciate your honesty. The great thing about support groups is that everyone “borrows and lends” from each other, but sometimes, your don’t have enough to lend, and no real need to borrow. At that point, someone else is filling those roles. That’s why it works, prevents anyone person from taking or giving too much. A support group that I interact with quite frequently uses the phrase “take what you like, and leave the rest.” So, jsut for today, you are leaving it all. Enjoy your break.

    • Kristen says:

      Oh. I love that phrase. “take what you like, and leave the rest.”

      I love that. it might go on our fridge. Thanks for the perfect words.

  13. Heather says:

    Yeah… I feel that way too sometimes. A lot actually. There are many many days that I dont read any of the updates on facebook if they are posted by a WHS parent. I just move past them and look for stuff from family and nonWHS friends. I miss a lot that way, but I’m kind of okay with it. And then other days that I read everything, comment, and pray for the kids by name. I may not always read, but when I do read, I pray. It’s a balance that works for me.

    • Kristen says:

      Heather – I need to work on your balance. For awhile, I created a facebook page for Alexander in the hopes of keeping our worlds separate, but that didn’t work. Thanks for the suggestion.

  14. MikeWJ says:

    I hope this doesn’t sound wrong, but I just can’t go to support groups. I know they might do me some good given that I have four special-needs kids, but I want to spend time with “normal” people and think about “normal” things some of the time. Even most of the time. Most of my waking hours, and many of my sleeping hours, have been spent thinking about my kids and their problems for nearly 18 years now, and I’m tired of it. Completely and utterly worn out on it. I love them, but I don’t want to have to deal with it anymore. I’m past the point of acceptance and tolerance, past the point of slogging through it, and I just want some freedom from it.

    I guess that might sound bad, but it’s the truth.

    • Kristen says:

      Mike – your truth is your truth. Sometimes I feel the same exact way. I think our big difference is that Alexander is so young – I still have a lot of questions I need to know. But, I could see myself, 18 years from now… being you. By the way… I think it takes an amazing person to raise 4 children with special needs.

  15. Nora Blithe says:

    I wish I could say something supportive and understanding because I can read your pain in this post. But the truth is, I don’t have a sick child and I’ve never stood in your shoes. In fact, I’m not even a mother and I don’t think I can appreciate what motherhood is like or how it’s different when your child is ill. However, I spent 20 years of my life suffering from clinical depression and I can relate to the feeling that you want to just be free of the suffering and work even for a few moments. I hope you find rest and peace in the midst of your battle.

    • Kristen says:

      yes, it is very similar to depression. These tenticals that keep grabbing you. (I’m picturing the Ursula from The Little Mermaid) reaching out to grab me. Thanks for understanding.

  16. Kait says:

    Honestly I quit my support groups. I was getting so anxious about the different procedures, surgeries, therapies, I just couldn’t handle it anymore. I know WHS is way different than cleft lip/palate but I understand that sometimes you just need a break. I think it’s healthy to take a break from it all, in the end do what is right for you and your family.

    • Kristen says:

      Yup! Yup! Yup! Sometimes I think I want to quit too. But – I do love that they “get” all of our stuff. And love us. Thanks for understandign.

  17. Dea says:

    Amen, sister! I am so tired of everything it entails I just want to run away some days. It’s blogs like ours that enable me to escape my reality no matter how briefly!

  18. I love your honesty..!! I totally get what you are saying and agree with you. Even though Ellie has WHS, i dont let it dicatate who she is or let it consume our life. I have to admit, I have sometimes had to say to friends and family that I dont want to talk about WHS and how it effects Ellie, not because I am scared or in denial… Ellie is who Ellie is. But because I want to sometimes have normality, the normality that keeps you sane…
    I too am a follower of quite a few support groups on FB for WHS, and yes get emailed updates. However I choose when I want to read the updates and how often… I dont let that comsume my thoughts either.
    I dont think there is anything wromg with thinking this or doing this, we just crave somewhat ‘Normality’ in our not so ‘Normal’ World

    Love to you xx

  19. Kelly says:

    Do not feel guilty for stealing a moment of “normalcy”. Your heart and soul need it as does your family.

  20. Charlie says:

    No one is going to fault you for your truth. You put your heart out there and it allows those that can relate to take comfort in it; I would even say that’s what you do best.

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