How do you act normal?

[Anonymous]

Thanks Anne. Your support is invaluable to me. And if it helps any, my hubby has slept in the guest room since Hailey has been born so I know where you’re coming from.

[Anonymous]

Lori,

I understand where you are coming from – having a child that doesn’t fall under the “normal” catergory can be all-consuming, tiring, emotional and more than words can describe. My dd is 19 months old and we have had quite a journey. SHe had suspected seizures, undiagnosed reflux for 7 months and only in the past few months have we gotten the reflux under control so that we can focus on her other issues – low muscle tone and developmental delays. I can offer you my advice on how I got past the isolation, frustration, etc. It might work for you – it might not and I hope it doesn’t sound harsh or unsympathetic because that’s not my intention. Here’s what helped me:

Getting out: Go somewhere – even if it’s for 30 minutes. Try taking a walk outside, go to a park, playground, etc. I used to take my 2 girls to the mall to walk inside and get a change of scenery. Set small goals for the outing – don’t expect to be gone from the house for hours. Start small – set a goal to stay at the destination for 30 minutes and then maybe the next time add some time on to it. I found that meeting this goal gave me a sense of accomplishment and success in a time when I wasn’t feeling like I was good at much (especially mothering). The change of scenery was great but feeling like I was accomplishing something I set out to do helped me feel better about everything.

Accept your normal: Your life isn’t perfect, it’s not what you imagined but it is yours. I finally had to stop asking why me and start asking why not me? Similar to what Anne said, try to find some reason that this is your path. Acknowledge what you are good at in taking care of Hailey: finding docs, finding meds, pushing and being her best advocate, not accepting less that any doctor’s best for her, scheduling appointments, keeping a strict schedule, etc. Even the things that frustrate you the most about caring for her, could be your strengths. For me, acknowledging that I was good at taking care of my daughter and all her needs helped me to accept what we were going through. By the way, whoever thought up the whole concept of “normal” in my opinion, probably weren’t very “normal” themselves 🙂

On friends: Don’t expect everyone you know and love to “get” it. There not going to and it’s not because they aren’t great people. THe concept of “scaring people away” is so true- not because you or Hailey are scary or nasty or depressed, etc. But, it’s that your situation makes people feel helpless – those who love you and Hailey want it to be ok, they want “normal” for you and her they want to just help – but don’t know how. For some, glazing over it and pushing it aside is the only thing they know to do. There will be 1 or 2 people in your circle of family and friends that will so “get” it. Realize that these are the people you can unload on to and that the others in the circle might be good for other things – like joining you for your quick outing, reading the same book that you are so you can talk about something besides life, making a dinner for you every couple of weeks. I found a sense of peace when I figured out how my family and friends would fit into this whole picture. Now, although it sounds selfish, I take what each person is best at giving.

I hope this helps and again I hope it’s not harsh – I don’t want it to be. And more so than anything, what worked for me might not work for you – but you have to keep trying, keep reaching out here and in your world “closer to home”, keep searching for some good and joy on the path you and Hailey are on.

Take care

[Anonymous]

Lori, I am so sorry you are going through this. I have not had it near as hard as you but even I do not feel “normal” half the time. I am so sleep deprived that I feel like I go through the motions of the day like a zombie and wonder how in the world I have managed to keep my job since I can rarely concentrate on anything and spend half of my time researching things on the internet or on this board!

You are so right, no one seems to understand. I would never ever wish this on anyone but I do wish at times that all of my friends with normal babies could see for just a minute how hard it has been. I still remember the day when my friend with the perfect angel baby e-mailed in an uproar because her daughter would not eat her green beans. I almost started crying becuase I thought how I wish that was all I had to worry about!

Also, just recently I really had my feelings hurt because my mom called to tell me that my grandmother ran into a nurse at her dr.’s office that had a reflux baby and she told her how it cried all the time and was so miserable. She told my mom that before then she didn’t really believe babies could have reflux and maybe Seth really did have it. #$%^&* Did she think I was making it up??????? I am still so upset and feel betrayed about this.

For all it is worth, I so admire all of you that have coped so well and continue to fight for your babies in the midst of what has to seem like endless obstacles. Sarah and Hailey are very lucky to have a mom like you and hopefully one day all of this will be a distant blur. You definitely serve as an example to others and help (and will continue to help) through your advice and experiences. In the meantime, I pray it will get easier for you and that Hailey will improve soon.

Mom2Seth2006-4-24 13:54:7

[Anonymous]

Melissa, thank you so much for sharing your experiences with me. Sometimes I’ll just talk to someone that makes me feel so bad about what we’re going through, but then people come along from this forum and remind me that things might not be easy, but that we’ll get by, and to stop and smell the roses instead of the vomit (so to speak).

Tiffany, thank you so much for your support, It really means a lot to me. Sometimes I just get so bogged down in the day to day struggles of it all and feel so alone. Losing my friends has really been hard for me. When I do find half an hour to call someone and they say “we get together all the time, but figured you’ll call us when you can actually do something. that’s why we don’t call you”…it just makes me feel really isolated. This group is in so many ways not just my support system, but feels like my family. Thank you.

[Anonymous]

Lori,

Just wanted to offer some hugs & support. Wow, it sounds like these wise mamas gave you some good advice & there certainly are some others in similar places as you. I want to premise my story with the fact that this is me, about 2 years into all of this. Emma will be 2 in a few weeks, I’ve had plenty of time to think, to let things sink in, to feel every emotion known. I don’t want to come off as sounding condescending or “c’mon, get over it & get happy.” That is CERTAINLY not my intention! I may speak of things much easier & give the impression that getting through such hard times are simple. They are not, in no way, shape, or form.

A few “easy” things that I have tried doing to help me are journaling, crossword puzzles, reading FICTION (great idea, Christine on the mysteries!), etc.

Also, while I let myself have down days every so often, I really try to stay positive. Yes, what Emma is going through sucks–no other way to put it. But, then I think of the kids who are so much worse off. I think of people I’ve met along this journey of ours who have lost their children (a few in recent months–it stays fresh in my mind). Honestly, all I have to do is think back to last July, sitting in the PICU with Emma in a near-coma. I thought I had lost her, no one knew what was going on. Our nurse even cried. Dh & I were zombies those few days, I have never felt such heartache. I prayed SO much. I was so afraid I was going to lose my daughter. Having that forever in my mind tends to be my anchor. When I start to get depressed or think “poor me” all I have to do is see Emma with her eyes open, but her not really there. Then I pick myself back up & remember how precious each & everyday–however hard–really is.

I have to make an effort everyday to focus on what is GOOD, even on days where it seems there is very little GOOD going on. Up until a month or so ago, Emma was awake about every night & didn’t nap. Now that her seizures are under control, she is sleeping better. But, she is still up several times per week. My days are long, non-stop with giving meds, tube feeds, doctor’s visits, therapy, etc.

I have found that Emma responds to my emotions A LOT. If I am sick or sad, she is more cranky & sad herself. When I remain calm & more upbeat, we usually have better days. It takes a while to re-start your parenting button when your child is different. I had to learn that even at almost 2 years, I will be holding my child A LOT (somedays, all day).

The biggest things I have learned with regard to ‘others’ is that THEY JUST DON’T GET IT! The ONLY people that I can say I’ve found REAL support from are other moms who have kids like Emma. They get it & they care. Most people just don’t want to hear it. Like the saying goes, “walk a mile in my shoes…” My sisters & mother are great, the in-laws are terrible & I’ve learned to just ignore them. As for friends, I have some that I have light conversations with from time to time and really only 2 or 3 close friends. Janice who comes here is one of them. We try to go out at least once a month & try HARD not to discuss medical issues. We’ll vent tons, trust me, but stay away from talking med-talk!

Lastly, I’ve found that despite how things look today, they can look entirely different tomorrow. Regardless of what diagnosis or label a doc may make, your child is unique & different. Each child has their own path to take. So, even though for now things seem unending, they may not be. Next week, next month may bring on change in Hailey, relief from her symptoms or help from docs via medicine, diet, etc. My expectations for Emma are HIGH (higher than I think most of my docs would like). I’m realistic in that chances are she will not go on to experience the same things in life that Madi will, but I can’t put limits on what she will experience. My main goals for Emma are that she be happy & not in pain. If we can help her achieve that throughout her life, then I could not ask for more.

Take care.

[Anonymous]

Lauren,

Thank you for sharing. You are a great mom and an inspiration to others. I’m so sorry you had to go through such a terrible medical scare with Emma… no mother should have to watch that. When Sarah had her first seizure, we didn’t know what it was. I just picked her up out of her crib and she went blue and started jerking her head back. We thought that she wasn’t breathing and while my husband gave her AR and I was on the phone with 911, I thought we were losing her. Thankfully she came out of it and was given back to us. I am so glad that Emma over came her sickness.

I do apologize for this thread. I often try to control those feelings by focussing on the positives, but sometimes just find I can’t get out of my rut- like when I posted about my pity party. Again, I’m sorry. I know it could be much worse.

Thank you for your support.

[Anonymous]

Lori – don’t apologize at all!!! I haven’t responded to you yet because I’ve actually been thinking a lot about what you said. I still don’t feel normal since having Owen, although I’m getting closer I think – or else my idea of normalcy has changed a bit. It’s SO hard. I have found the whole transition to motherhood to be very difficult anyway, not even considering the fact that Owen has had health issues to deal with. I find myself being envious of every single friend/family member that I have that has a “normal” kid – until I realize that I think Owen has a more fun personality that any of those “normal” kids and I realize that I wouldn’t change anything for the world. But it’s a struggle that I have nearly every day – and I just try to do the best I can every day and hope that someday this will all be “normal” to me.

I don’t have any great advice for you or anything, but PLEASE don’t apologize at all. I think that the fact that so many of us have responded to your feelings shows that it’s completely natural to feel that way sometimes – and how wonderful that all of us have this forum to share our thoughts with others who do understand us somewhat. I actually applaud your ability to be so honest with your feelings – I’m sure if nothing else, it is therapeutic to get those thoughts off your chest when you need to.

[Anonymous]

i think we can all relate! i found one thing that drove me nuts was when i would say reflux people would say well it’s just a little heartburn, what’s the problem. most people aren’t going to ever really “get it”.

try to find something you can fit in your day that’s just for you. i am a single mom with no family near by so it’s been hard for me to find time for myself, but it’s something i have to do. i have a friend who will watch my dd so i can soak in the tub, or when she goes to bed at night i’ll read for 1/2 an hour. little things like that have helped me stay sane, lol.

hugs!

[Author]

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