Infantreflux.org | How do you act normal?

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April 21, 2006 at 3:07 pm #6526

Anonymous
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Let me preface this by apologizing for posting another downer…

Last week we had family over to celebrate the holidays. Some stayed at hotels, and some stayed at my sisters’ houses. No one stayed here, since no one was invited, because of Hailey’s issues. Some of our family members know what’s going on with her, and others like my grandmother don’t, mainly because we don’t want her to worry. There were many lunches and dinners, none of which fit around Hailey’s schedule, and even when we did go, it was very short- we would have to leave after 45 minutes to make it back for the next sleep feed.

Which leads me to the question: How do you interact normally with other people when you are going through this? My family was getting really mad that I was going to the dinners, and they were apparently saying that I must have PPD for not attending. Even when I did go, when people would ask me “what’s new?” I really wouldn’t have anything to talk about other than Hailey and her issues. Her problems are so consuming, that I don’t have much else to discuss. I’ve lost so many friends because I can’t go out except for 2 hours in the morning so I don’t interrupt her sleep feeds. They don’t get it, and even if we speak on the phone, most people don’t really want to hear about problems. They’ll ask, “How’s Hailey?”, but then when I start telling them, I find that they just don’t know what to say or don’t sound very interested. When they tell me about their children, I either feel annoyed by their complaints about normal baby things, or I feel a burning jealousy that they have children without these problems. I’m ashamed to admit this, but sometimes I wish that someone else would have a baby with these problems just so I could have someone who could relate to us. You guys have been my lifesaver, but sometimes you wish that you had someone you could meet that actually had the same things to deal with on a daily basis. I also find that I’m always worried about Hailey catching something that’s going to make things worse. I’m always asking people if their children are well before going near them, and I get mad when they tell me “all kids have runny noses, it’s not a big deal…or all kids have coughs…. or you can’t worry about every little thing”. I know life isn’t fun when you have to worry about all these things, but few people understand this.

Hailey is 11 months old, and I honestly fear that we are going to be the only ones who are still going through this with a child who never gets over it…. that she’s going to be the tiny percentage who can’t get relief and it really scares me. It also worries me that I’ve lost so much of myself in giving it all to Hailey that even when I’m around other people I don’t know how to talk about normal things anymore. For those of you who are dealing with reflux or even worse with reflux and feeding aversions and delays, how do you interact with other people and have normal relationships?

Sorry, i guess I should have put this in the boo hoo section…

April 21, 2006 at 4:02 pm #6533

Anonymous
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lori—if you get some time to read,(time? what’s that!?) try reading a mystery. it will get your mind thinking about something else rather than hailey’s problems. trying to figure out “who done it” might give your mind a little bit of a break, and when you talk to people, you can say, hey, i just read a good book. if you are losing friends because you can’t do things with them—-they probably were not the best of friends to have anyway.

and as far as interacting normally—–there is no normal.

April 21, 2006 at 4:19 pm #6534

Anonymous
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I do understand how you feel about family members/friends not understanding. I have dealt with it since day 1 with Noah. People have learned to “not ask” how he is doing. If someone does ask, and I start to tell them, they seem to think that I’m over-reacting or I am trying to get a lot of attention (my grandma thinks this). Others will look surprised and baffled and then go on to tell me how their child eats like a horse. It truely is frusting to say the least. I have lost some of myself throught all of this. I have become a different person too. My dh says I’m not as happy and fun loving as I used to be. I’m labled as a chronic worrier. My relationship with my dh and my other two children has suffered. I have become so consummed with his eating and his schedule, that my whole life, and everyone else’s revolves around Noah eating.

I guess I havent done a very good job giving you any kind of advice. But I do want you to know that I have felt and have thought many of the same things as you. I’m thankful for meeting people on this site, like yourself for instance, who have been a life-saver for my sanity. We’ll all get through the rough patches…..eventually.

lisaann2006-4-21 16:21:15

April 21, 2006 at 4:52 pm #6538

Anonymous
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Lori,

I know my situation is different from your’s but I can really relate to what you are saying because I am going throug it too; but for different reasons.

I just want to tell you that I have a so-called “abnormal” situation in my life (my miserable marriage) that has caused me to lose friends and lead a very isolated life as well. I really can’t go into graphic detail here because it’s far too personal, but I want to tell you something that my sister told me because it has really helped me a lot. She told me that as hard as it is, if I wanted to have more social interaction and not “scare” people away or make them so uncomfortable that they don’t want to be around me, that I should be very, very brief, and leave out most of the awful details when discussing the so-called “abnormal” situation in my life. I should save all of that for the select few people in my life who can handle it, and who can see me for who I truly am despite my situation.

Most of your family and friends may mean well, but they simply can’t understand what you are going through, and they really don’t know what to say or do. Some of them probably are grasping at straws trying to “figure it out” because they’ve never been through it and they don’t have a clue. Some may blame you because they are (excuse the “bad” word) ignorant about REFLUX, and they compare you and Hailey to other mom’s and babies they’ve known. I have this problem with people who can’t understand why I stay in this relationship, that there must be something wrong with me, etc. (There are very rational reasons why I stay, and those who know and love me understand – at least they understand as well as they can without having been through it themselves).

My sister’s advice has really helped me a lot. I have a few people who know me well that I can talk to and not be judged as “nuts” or “PPD” or whatever. They understand my situation and they can separate me from the “marriage.” This is a very small group of people, one friend, one aunt, my pastor, and one of my sisters. But that’s enough to help me cope.

As for protecting her from every little thing, I do the same thing with Myles. Reflux is bad enough without the added misery of a cold, respiratory infection, bronchitis, or any of the other illness that seem to be spread from child to child. So ignore these people and continue taking good care of your little girl as you have been. One day she will outgrow all of this and you won’t have to worry about every little thing anymore, but for now it seems quite reasonable to me.

As for the time factor and being confined to the house because of her feeding schedule, I can really relate to that. I can only feed Myles at home because he will only eat swaddled, and in a quiet environment. This plus the prospect of having him hurl puke across the room in somone else’s house or in a store, keeps me confined to the house most days. It is quite maddening and I really can sympathize with you on that. The only thing that has helped me with the “house arrest” is that I have a good friend who is also a SAHM and she comes to visit me about once every other week. (I always tell her how much it means to me because I am so isolated otherwise). Also, I have been taking the kids outdoors for a little while most days now that it is warming up and that helps a little. Last week I “practiced” taking the kids out when I knew I would have to feed Myles. I tried swaddling him and feeding him in the car (at least it would be my car and not someone’s couch that got puked on) and it went better than I thought. He didn’t eat as much as he would have at home but I feel a little more comfortable now if I have to do it again. Will Hailey sleep feed in her carseat? Maybe you could try it once and see if it would work. If you’re anything like me, you may be hesitant to try it, but once you do you may find that it works better than you thought it would.

Anyway, I know my situation is different, but I do think I understand to some degree what you are going through. I hope you can find some more social interaction to make you feel “human” again. I know what you mean when you say you feel like you’ve lost so much of yourself. I feel that way, too. Having people to talk to (and leaving out the bad stuff) really helps in that area. You’ll rediscover that you are someone besides Hailey’s mom.

ndrose2006-4-21 16:52:45

April 21, 2006 at 6:52 pm #6543

Anonymous
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Thank you guys. You all mean more to me than words can say.

April 21, 2006 at 9:55 pm #6554

Anonymous
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Lori – I totally understand how you feel, other people will not understand how we feel unless they are going through the same thing as us, so sometimes I really do not even bother to tell other people, I think the only one can understand my situation is my DH and people in this web site, so I can only complain to him and write post here.

April 21, 2006 at 10:24 pm #6557

Anonymous
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Lori, I understand where you are coming from. It’s crazy that family can be so critical and hurtful at times and complete strangers can be your support line. But I am so grateful every day that there is this site and I can help or have support from others going through the same situation. I know that you heard it a million times… but they will get bigger and grow out or learn to deal with these problems in a different way. As for holidays… we are not having any with family now. I have told everyone that I am on “baby time”. I am not messing up her schedule (now that we have one). She must come first. They can understand if they want, or choose to be bitter. I don’t care anymore. We will all have our lives back one of these days. Hang in there!

April 22, 2006 at 3:36 am #6559

Anonymous
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Lori- I’m right there with you girl. My DH is thinking I am just an obsessed worrier and blows off half of what I say. My friends, for the most part, just don’t get it so I tend to minimize what is going on with Claire. Its tough because most of them are medical people and form opinions quickly, based on limited information. My Mom, she means well, but she just keeps up this happy line, “Well she looks like she is doing great to me!” (regardless of the situation). I have a few pals with whom I can really dump my bucket, they get it, and it does help. Worry is a solitary thing- as evidenced by the timing of this post. Shouldn’t I be sleeping now?

April 22, 2006 at 8:32 am #6561

Anonymous
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Lori

Unfortunately, i do not have much in the way of advice… i am very fortunate because i have such a supporting family and being back in Spain with them has proven to them that all the concerns were real. I feel like they really understand what is going on and they stopped second guessing me a while back and will always call and ask about Matthew’s schedule to see if they can fit in a visit.

I am back in NY (will post separetely) and i know that i will not have that but it helps to know that there are people out there (apart from all of you) that understand what is going on. Is there someone really close to you that you can sit down for a few hours and explain what is going on… someone who will worry about Hailey and understand and help?

As for the house arrest… we are in the same boat i am afraid. We are trying to do all feedings for Matthew the exact same way with teh same toys and the same place etc so between that and trying to feed him, we have just a couple of hours to get out of the house. BUT i do have some help here with Matthew and so when he is sleeping i can sometimes sneak out for a manicure or to go window shopping or somethign like that. I think that you said that they offered you some help a few hours a week?? PLEASE TAKE IT. Hailey will be fine and you will have some time to relax (Maybe that person will also watch your oldest or you can organise a playdate for her around that time). If you can afford some help, please get it!!

As for friends… well i have lost a few too… a couple of my good friends or so i thought in madrid kept calling to go out for lunch, dinner… i kept saying that if they wanted to see me and meet matthew it would be best to come around to the house… well i was there for 5 months and 2 of them never came by… i don’t think i lost much, do you? Probably better this way. Others have been truly great. Do you have male friends? May sound stupid but i have a few and they are the ones who understand the problem better! They listen and they worry and they think that it is all so difficult (LOVE TALKING TO THEM!).

Hang in there, Lori… one day we will be in Toronto and we will take Matthew and Hailey out for pizza ok?

April 22, 2006 at 9:26 am #6567

Anonymous
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Hi Lori and everyone else. Unfortunatley don’t have much to add but
just wanted to offer big hugs and tell you all I hope it gets better
soon.

April 22, 2006 at 8:17 pm #6588

Anonymous
Inactive

Hugs to you Lori. I stopped trying to explain Tylers problems to people a long time ago. My mum understands and my sister as she had a reflux baby too, but thats about it. All of the mothers in my daughters playgroup had angelic second children who never give them any problems so they really dont understand.

I work part time, so I guess I have more to talk to people about than Tylers problems. Do you have any hobbies or interests? I know it is almost impossible to find the time, but it might take your mind off things for a while. I am trying to plan a holiday to somewhere warm at the moment, Im not sure how Tyler will cope, but I think it will do us all good to get away from things for a while.

You have done so well to make it to nearly 12 months, these kids will be all grown up and not need us anymore before we know it .

April 22, 2006 at 10:18 pm #6591

Anonymous
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Thank you everyone. It certainly helps to know that you all understand. The problem I find, isn’t even the other people not understanding- I’ve learned to accept that somewhat- but me finding it hard to relate to people who don’t have to deal with these things. When you go to mom and baby groups, or just talk to people with children who don’t have to deal with this, and they’re complaining about normal baby things, or talking about how their child has slept through the night since 3 months old, or how they’re so worn out by looking after their (normal) baby, I just want to scream. I don’t want to listen to people complain about nothing- and I’m sure that there are people who feel that way about me as well. But I just find myself so jealous of anyone who has a normal life. But don’t want to tell people to stop whining, so I just keep it to myself until the anger and irritation towards them just gets to me. And when they talk about their baby, who has always slept well since 3 months old, suddenly started waking once a night, how can I relate??? I just want to say, “Oh, poor thing. I’d consider it a miracle if we were in your shoes”. As I’ve said, I know that there are many people who would give anything to be in our position, and who are dealing with things that are much worse. But that’s only the rational side of me. The human side, just feels so isolated and entrenched in something that people just don’t get. I feel rotten, and ashamed to admit, that sometimes I wish someone else I know would have a baby with this problem, just so there would be someone else going through this. And I know that’s not normal. My life is just so consumed by reflux and seizures that I find that I don’t have much in common with people who I used to be friends with.

On a less depressing note:

Amber, enjoy your holiday. Where are you thinking of going?

s&h’s mum2006-4-22 22:19:15

April 22, 2006 at 10:39 pm #6594

Anonymous
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I find it hard too not to be bitter and jealous towards people and their “normal” babies. Its a shame that they dont have playgroups for kids with reflux and feeding problems where you live. There is a local group DISA here who have coffee mornings for mothers with children with reflux and allergies. I would like to have time to get there, but havent had the chance yet. Just try and remember that all this is temporary and hopefully will be a distant memory in 12 months time.

I would love to come over to Toronto and visit my family there, I havent been for a few years! Unfortunately lack of finance and the thought of travelling 20 odd hours on a plane with 2 screaming children kind of rules that out for a couple of years. I was hoping to go up north to Queensland which has a warm tropical climate and beautiful beaches. Its only 2 hours on the plane so shouldnt be too stressful. I think it is exactly what we need!

April 23, 2006 at 7:48 am #6599

Anonymous
Inactive

I agree with Christine wholeheartedly…ultimately finding other things to focus on was the start of my own healing. I sounded a lot like you at one time. I basically just stopped telling people about Hailey’s problems (including telling my own mother) because no one understood and I was tired of being labeled a worrier. A co-worker told me one time that if I kept taking Hailey to different doctors, they would start to think something was wrong with her (). That was the last time I confided in anyone there. I agree that this website is a great source of support. However, I have taken “breaks” from here (and the internet) and that helped too. Hang in there. Things will get better. I can’t say when because it’s different for everyone, but I will say that for me – reflux and the eating problems Hailey had really are a thing of the past and have been for months. I basically feel “normal” – if there is such a thing.

April 24, 2006 at 5:04 am #6673

Anonymous
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Lori,

i can relate to a lot of what you are saying and feeling. and I think many of my friends and family think I’m literally CRAZY with all that’s happened. I wanted more than anything to find someone local who had a reflux baby. I even talked to my ped gi about starting a support group, but didn’t ahve the energy or brain-flow to follow through as I was struggling through my own miserable situation at the same time.

I also notice that EVERYone asks me how Lucas is doing…..it must be a politeness thing? Cause many of them glaze over when I’m two sentences into my explanation of whatever is going on at the time. I started giving the same answer all the time “Oh, he’s the same” to anyone who really didn’t need to hear. I’ve gotten a lot of “are you still nursing?” and “are you still sleeping separate from Ryan, oh wow” comments from those who were seemingly close enough to know about our unorthodox arrangements with sleeping.

My family, sister and closest girlfriends all live across the country……my absolute closest friends have been sympathetic, but JUST DON’t UNDERSTAND, because you really CAN’T understand it until you go through it. That was teh conclusion i came to. You can imagine that you would be a nervous wreck if your baby was like ours …..but until it happens to you and your baby, it’s not really going to hit you the same way. At some point, I realized that most of my inner circle of friends mean well, but just don’t understand–and it’s not their fault, it just sucks for me that it has to be that way. I realized I would need to get most of my support that would be the “I’ve been there too” kind from this site and these women, including you and the others responding to this post, many of which have responded to my questions throughout the year or so I’ve been on this forum.

I don’t know if this helps, but that’s what i’ve ended up doing. I’ve also spent a great deal of time recently thinking about the meaning behind this situation in my life, and in Lucas’ life. Despite the fact that it’s a serious medical situation, I’ve been looking for the deeper reasons behind it….thinking, okay, one day I’ll know someone who has a reflux baby who will really need my advice….In the end this roller coaster has taught me so much about myself, my strengths and weaknesses, and fears. It might not be comforting to you at this point, but there is a lot going on with you and your inner strength in working with Hailey that you might have never known or realized if this haden’t happened. I’m not saying it’s a great thing to go through this, but at one point I just realized it was happening nad I needed to feel like there was something good (no matter how small) coming out of it. I wanted to redirect my angry version of “why me, why us?” and the mean thoughts towards the other moms into something more positive. I guess without realizing it fully, I started thinking much more about what this means about me as a person and a mother, and how I could help others, than the anger and isolation I felt.

Ultimately, this web-site has saved me, I’m sure, from some sort of horrible nervous breakdown!! Just know you aren’t the only one and that even though we aren’t in the flesh, we are still here for you. Maybe you need to get someone’s phone number off this board (feel out one of your favorite responders for an exchange of numbers) who you feel safe with to chat about your situation. I did that way back and it made a huge difference. I also email directly some of the folks nad that also helped. Big hugs to you, Lori!!!!

ps. I’m writing this in the middle of the night cause Lucas is actually SLEEPING and I can’t!!! that’s another thing no one seems to undersatnd! haha
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