Prematurity sucks. That's the bottom line. I wonder sometimes if I will ever get over it. I want to. I really do. But the fact of the matter is that I am faced with constant reminders of their traumatic birth.
orthotics...eye patches...reflux medication...breathing treatments...vomit...poor feeding...poor weight gain...IEPs...physical therapy...occupational therapy...cochlear implant equipment and batteries...low muscle tone...high muscle tone...walker...wheelchairs...appointments and opinions.
It's hard to relax and enjoy life with your family when there is so much to worry about. Sometimes I feel like it is getting better. Then I have days like I had this weekend that remind me how far from "normal" my life truly is.
I went to a family party. It was my beautiful niece's 2nd birthday, and my sister had us over with a group of her neighborhood friends. It's not that it wasn't a great party, and it wasn't that I didn't have a good time. I did. It's just that, for whatever reason, it hit me how much our lives are different from everyone else's.
The other parents sat around in the front yard and had a few beers. The kids ran off in different directions, to play on their bikes and scooters and cars, to climb on the jungle gym. You know, the usual. Some moms helped their kids get a plate of food, then helped themselves while their kids sat and ate.
That's what I want. I want to be one of those moms. I want to sit on the bench at the park chatting with the neighborhood moms while my kids run and climb and slide. I want to hand them a hot dog or an ice cream cone to eat while I finish my plate. I want to help the women preparing food and cleaning up in the kitchen while the kids play in the other room. I miss those simple things.
Instead I hold Holland's hand as she climbs the stairs to the deck over and over. John and I take turns pushing them on the swings, helping them climb on the jungle gym. I sit on the floor of the play room handing Eden the toys she cannot reach, and making sure none of the other kids trip over her as she lays on the floor. I strap her chair onto the car so she can have a turn taking a ride. I make their plates, and John and I sit, each with one, to feed them every single bite long after everyone else is done eating. He cleans up Eden's vomit and changes her clothes. I drive home listening to Holland coughing, just wishing we were there already so she could have a treatment. We take turns giving breathing treatments every few hours through the night, wondering if we need to make yet another trip to the ER. The same thing happens the following night, then Eden's nose starts running too. It never ends.
It's very isolating, this life. I am surrounded by the most incredible, supportive and loving family and friends, but still I feel lonely and often disconnected. I am sure some of it is my doing...maybe most of it. But I'm am also sure, to a certain extent, that it just comes with the territory.
32 comments:
It is isolating. Which is probably why so many people come and visit your blog everyday--to find someone who feels the same way. We attended our own birthday party this weekend and it is oh-so-hard not to spend all my time comparing my child to ones who had normal births. And, of course, you wonder how you got picked for this.
Still. . . some days are Ok. Also, I've promised myself that if going to a kid's party is too hard, then I won't go. Some days I just get tired of feeling like I have to justify or explain my child.
I think "bird" hit the nail on the head as I was thinking the same thing. Many times I feel so alone and I just want to sit back and watch my kid play with the others. Today was a hard one for me too, as it was filled with hours packing Crew around, bouncing, walking him and wiping his nose. Thanks for putting into words something I can't.
I too have been feeling the isolation of prematurity and disability. We have been invited to a birthday party for my friends's twins. I am so scared to go. I have isolated myself from my friends who have "normal" children because of the pain of seeing their chilfren who are younger than mine do so much more than mine can. It is so hard no to compare and feel the pain. Our life seems so much more normal when it is all we know.
I know it is not right to isolate the girls and I try so hard but some times it is just to painful. I know that some of it is ME but I also know some of it comes with the territory. But like "bird" said I get tired of answering the questions and expaining my babes.
First off, let me say that we are grateful that Hallie has no serious mobility issues and that while we are absolutely aware of how much harder this makes everything, we cannot possibly purport to place ourselves in your position.
That said, her issues are isolating for us, as well. The no eating/constant vomiting thing has us pretty down right now. Sunday, we had a Passover seder at our house. Sharon couldn't help because Hallie had vomited chronically, needed several refeedings, and couldn't nap because she was so out of sorts. Finally, she fell asleep and Sharon was able to come downstairs mid-event. When Hallie awoke, we brought her down and gave her prilosec, which she proceeded to vomit up all over the place at the table. We changed her and brought her back down, but it certainly put a damper on things (though it served as a pretty darned graphic example to those who have heard us complain about such things but who have never witnessed the fun, which of course you guys have). This would be tolerable were it atypical, but sadly, we have not actually gone out to a single party, dinner with neighbors or relatives (we don't bother eating out anymore), etc without vomiting happening at least once. Hallie choked on jello (how in the world is this possible?) at her friend's 2nd birthday party and had to leave; choked on yogurt and baby food at her aunt's elegant 40th birthday party and had to be swabbed dry; and will no doubt choke and vomit at my brother's wedding in a couple of months. Sigh. And don't even get me started on my disdain for planning Hallie's 2nd birthday celebration in a mere 6 weeks. What in the world are you supposed to serve at a party for a kid who can't eat and who may be allergic to more things that we can imagine? Are stage 2 baby food jars and goat milk simply thick shakes an appropriate snack to serve others? Do we just go ahead and get real people food and ignore her dietary concerns or do we interrupt the party to shove her in the high chair and force feed her yogoat and stage 2 pears? Happily, anyone about to be invited to this shindig (a small, select group this year) knows us well and has seen and heard the stories, but still one wonders about the toll it takes, on us, who are half crazy with this stuff and unable to figure out what we can research next, let alone how to solve it, and on Hallie herself, who is very bright and clearly understands that she is different. Sigh. So, yeah, this sucks, and there's no two ways about it. Makes you just want to have other micropreemies and kids with various assorted special needs over for dinner and have done with it.
This is totally how I felt this weekend, went our for dinner with 3 friends and their children. Hard not to look on enviously while the other kids younger than Chloe ran around, gave themselves a drink, fed themselves, talked!!
As per usual Chloe was glued to my lap, wouldn't go to anyone else, constantly demanded I give her a drink, fed her.....she's only 20 mths so I know we have so much further to go, but i sometimes wonder whether it'll only get harder rather than easier?
Those with normal kids do their best to understand but they can't really comprehend how your life changes with a child with a disability.
Billie,
I could not agree with you more. It just plain sucks!!! But when we get together with you guys life seems normal, at least our own normal. The attitude I have come to adopt is life could always be worse. There is always someone in a worse situation and for that I am so grateful for what I have.
Kelly
Billie,
I've had many times like the one you recently had. I look at Moo and I wonder how his future will unfold. We go out and I feel exhausted when we get home. It's not relaxing. Not even close. But then I watch my boys and they are hilarious. They all bring so much joy each and every day and I kind of feel sorry for the people that can't see that. It makes the exhaustion worthwhile.
And if this makes you feel any better at all. I think it is getting easier as Moo gets older. The kid makes me proud.
Jacqui
I know how you feel. Most days I feel very alone--also doesn't help that all of my relatives live in different states. No one can know what it's like unless they've been there, done that.
I agree-it's the little things that add up. Like going to the park with my now 8 year olds and not being able to sit on the bench with the other moms and watch. Instead, if I want Jacob to go play--(he could usually care less)-then I need to walk him around and up and down the playground--which isn't always made for someone who's 5'6".
Kelly is right though, there is always someone who is worse off.
(I need to remind myself that too.)
Carla
Just to give you some encouragement though: when I found out Lara has CP, I was devastated...until I found your blog! Even just reading your blog, we can't really know everything you have to deal with, but nonetheless, you are really a great inspiration for us.
Because of your generous spirit to be so open and honest on your blog, you have reached so many hearts and helped so many families. I am grateful for this blog that connects me to such a giving soul.
Love you,
Laura
Oh my God I could have written this post myself. I just wrote one on my own blog about going to the playground with friends and how horrible it was. I came home and cried myself to sleep that night. I felt EXACTLY how you described: totally isolated and alone, with little energy to be around people who don't have kids with special needs because no matter how sympathetic they are, they just don't get it. I've tried hard to connect with other local parents of kids with CP but am not finding it easy to find them! We're just too busy and immersed in our own world of treatments, therapies, and dealing with our own sadness and grief over the hands we've been dealt.
Your description of wanting to just sit and watch your kids play, like the other moms, especially hit home for me as in addition to the playground debacle we had friends over to play in our yard and they both sat and talked and laughed and enjoyed each other while their boys played, and I was running around like a chicken without a head trying to help Hannah and Isabelle the whole time. It made me secretly totally annoyed at and also envious of them. I felt so pathetic and it just sucked.
I wish we all lived closer and could share our worlds and not feel so alone.
Isolation is such a perfect way to describe it. I took Emery to the park yesterday and put him in the swing, and I'm getting the point that I can't stand the stares I get carrying around an O2 tank that weighs as much as he does, and go to a party? Forget it. We're technically still not allowed out yet, and even if we did go we'd have to bring a feeding pump and massive tanks and try to maneuver him and the thanks around play equipment. I so understand the envy!
And I don't know if it's something we're supposed to get over. I think it's okay to say 'this sucks,' and leave it at that. It's okay to be honest that it isn't great all of the time. I've been reading your blog for a while now, and you've never come across as a whiner.
I love you Billie....big hug
Jules
I also love you, my dear, just like mama jules. Can't WAIT to see you and sit around the pool, fruity cocktail in hand. 16 days and counting. Love, Jess
I am a long time lurker. My children were not premature but both have disabilities covered by the American's with disabilities act.
My older son has severe ADHD and ODD. He is 6 and more than a handful. He socially has alot of issues. My younger son who is 18 months old has severe food allergies. He throws up at every party we go to even when we bring his own food. Our families are not sympathetic to the allergies.
At a party I can never relax. Is the older one doing something completely inappropriate and dangerous? Is the younger eating anything?? Is someone feeding him??
I cannot fathom what you have gone through with preemies and how hard it must be. I can relate that sometimes it just feels safer to just stay home.
Our road isn't easy. It is hard when you realize how different our kids are from others. Our loved ones can be wonderful and supportive, but they just don't know what it is like to live it everyday and know that ultimately there won't be a true healing/end.
HI Billie, Ole not a parent speaking here. I can't feel waht you feel but I can understand why you feel that way.
You and Jon are remarkable parents. Your girls are so lucky to have you because you treat them just as kids. I'm sure days like yesterday are doubly hard because of it.
sending hugs, kisses and good thoughts your way.
I just posted on pbm's a few weeks ago about how it just hits you one day. I have known that Kellar is not on par with other 2 year olds, I am not afraid to admit it ( though most of my family won't even talk about it ). I am constantly watching Kellar, standing over Kellar to make sure if he does trip and fall that I'm there to hopefully catch him before he hits the concrete, if he sees steps or a step I have to hold his hand while he goes up and down it 30 bagillion times, yet a 15 month old comes by and does the steps with his eyes closed practically. I tear up Kellars food in pieces still because he sometimes still has the tendency to swallow things whole w/out chewing, meanwhile here sits a younder child that has picked up a whole slice of pizza and just tears into it. I feel that sometimes others can see the look of hurt on my face when I see how well their children are doing, maybe that sounds awful but it's true, at times it hurts and I too think how nice it must be to be able to just turn your child loose to run free at the local park, I am the parent that is climbing the steps and sliding down the slide w/my son because he still really has no fear of things and may decide to take a leap off the side of the slide, or just step off that open spot on the jungle gym. I am following him around while he pays no attention to that pole and runs right into it, knocking himself down, brushing off his face because he face planted and now has a mouth full of dirt. Tonight we took Kellar to have his pictures made, if I didn't make myself laugh I would have just sat in a corner and cried, he would not do anything that he was told to do, sure he's only 2 but the little girl that went before him was 2 and she did exactly what she was told, she laid down and smiled, she sat in the chair and smiled..Kellar was running around, wouldn't sit, wouldn't look at us when we called his name, he got so preoccupied with some blocks i think if we had set a rocket off in the building it wouldn't have gotten his attention. I know that I am blessed, Kellars outcome has been wonderful but as a mother you notice the differences..
Billie,
I don't think your isolation is of your own doing. Plain and simple, you want to do good by your kids, no matter what hand they and you were dealt. And to get them the things you want them to have, to allow them the chance to experience life like all other toddlers do, you work really hard at both exposing them to the world and at the same time protecting them. That is super tiring; its exhausting. Not that you would, but you did have the choice to keep the girls at home with John while you went to your sisters to drink some beers on the front lawn. But you didn't. Because of your love for those 2 adorable girls, you chose to show up with them and deal with all the things you detailed in your post. That takes courage. Courage to stand up for your daughters and all the other kids who face similar challenges. Can I just say, "you rock!!"
An admirer in NJ
You have made me realize that I should NEVER complain about my life. I might feel alone because my entire family - except for my husband - lives thousands of miles away and there are days when he is away on business and my twin girls are driving me crazy & I just want to go out.... ALONE !!! aaaahhhhhhh...
but then your story hits me right where it should. makes me think twice about how hard my life is... IT ISNT HARD AT ALL. my girls were born healthy, no issues at all. I was blessed.
You are amazing parents are you deserve a good rant and you deserve to have wishes.
Hugs to you all.
Billie you said it, once again, way better than me. That is exactly how I felt at Christmas when we went to Ireland. It sucked and was exhausting for the exact same reasons you describe (except for breathing treatments). It is isolating and lonely. People mean well but they don't seem to ever jump in and help either. And they could too. They could offer to help with a meal feeding the girls or offer to take 30 minutes and help them play - because when CP is involved you have to help your kid play which is of course being a kid something they want to do all the time.
But I never asked them to help either. I resented that I should have to ask. It felt like since Ellie is not a baby anymore no one wants to help. Which breaks my heart.
On a more positive note, she is way less sick now at 5 than she was at 3 and 4. Also getting together with other parents of kids with CP has been great. We have been meeting once a month (the kids in Ellie's class and parents and siblings). We all offered, no I would say, demanded to hold each others kids and play with them and somehow it was better and even a bit more relaxing than being in the setting you describe in your post. I am not saying that is the answer just that getting together with other parents in the same boat has been more fun and less lonely for me. It is lonely doing what you and John have to do just to attend social gatherings. We decided that the next time we go on a trip for any amount of time we would bring one of Ellie's carers to help. That way we could get a break and relax a little. So we will take less trips but they won't exhaust us when we do.
I hope the stuffy nose doesn't turn worse. Hugs. Sorry to rant - but you are so right about everything here it hit a nerve...
I am sitting here crying reading this because this is where I am right now. It's something I don't talk or post about often, but it is exactly how i am feeling.
My twins weren't micro preemies, or really all that early, but I had a problem with my placenta that was never detected until they were born & my daughter had a stroke in utero and my son had CP.
It just is so hard some days to not wish it all away and just have "normal" days.
Oh, Billie.
It's just so damn hard. Period.
And your post(beautifully written, as usual) proves in and of itself that this is decidedly NOT your doing. Just reading that made me exhausted for you(and John).
The isolation is so many things--- practical(RSV season) and emotional(v. hard not to get depressed and compare-- for ex a niece is going to be born in a few months and while I'm thrilled I'm already gearing myself for the "she's walking at 9 months!" emails.)
I used to have housemates who were severely disabled. Every time we went out it was never less than A Production, end of story. You do it because you have to, you even get used to it---but, whoa.
It is always completely overwhelming when you realize the every day little things other people take for granted are mountains for you-- and yet no one really sees that you're climbing them.
Sending love your way-- to you and your wonderful husband and those two precious daughters-- people who live in condos do not understand trying to bathe in the wilderness.
Hugs, Billie. Thanks for sharing the feelings you hold in your heart. As usual, it is so well said.
I've isolated my self in a little cocoon, because I feel like so many if my IRL friends can't relate to what I feel. Cooper has no mobility issues, but the loss of Logan has made me shut myself off from people. I sometimes wonder if I'll ever feel normal again.
Thanks for sharing Billie. As always, I admire your honesty and candor.
Billie, I have been feeling the same way. The older the kids get, the more I feel this way. The differences are more apparent. I feel like we are such outsiders. Thanks for sharing.
Jacolyn
Your story about the birthday party reminds me of when I was about 9-years-old and had difficulty interacting with the other kids in the neighborhood due to my Asperger syndrome (autism spectrum disorder). My mother would always be out in the yard that spring organizing and starting games between me and the other children in the neighborhood (mostly children several years younger than me). She'd always join in and play to keep the flow of the game going. As a child (up until about grade 6-7), when I didn't have a lot of peers to hang out with, my Mom would often sit on the floor and play with me. My grandmother moved in when I was a baby and did a lot of things around the house so Mom was able to devote a lot of her time to her children (especially me). As a young adult I am eternally grateful for this time she spent with me as a child and the close bond we still have now. Even though it's hard now and there always will be difficulties, remember when H & E are teenagers and adults that no longer want to climb playground equiptment or play with toys in the playroom they will remember this time you spent with them and be thankful for it.
Wow. YES! This is such a fabulous snapshot of life as a preemie parent. I have so many people say 'I'm not sure how you do it' or 'You're so strong.' I don't know how to respond. Some days I feel like it's just another day in the life...Other days I feel like it's another day in hell. The difference? Who knows. I'd love a day of 'normal,' whatever that means. To me, normal is vomiting and refusing food and meds and appointments and feeding pumps. Sad? Yeah I dunno...To the 'normal' Mom, maybe? But honestly, I'm so happy with my boy. I am frustrated and upset and pissed off at Mother Nature and want to kick PTL in the nads, over and over and over again...but at the same time, God...I'm so amazingly in love with what it all has brought to me. Lincoln IS Lincoln because of his circumstances and I just adore it all. I'm not naive (maybe I am). I'm not overlooking the obvious (but who cares if that's what I'm doing). And I'm certainly not forgetting his issues (but holy cow if I do forget, don't make me remember). I just love the kid.
I have a daughter that is almost 3 who was born 10 weeks early and is very similar to Eden. She has no self mobility and I have to help her play with toys and other kids at any kind of social events or family functions we go to. I hate it. I feel bad for her and for myself. I can never relax because she wants to be doing things non-stop. She also wants to play with the other kids. I feel incredibly envious of the parents who just sit around and watch their kids.
Same thing with the park. I have to help her do everything and I see other mothers sitting on the bench and talking while their kids who are younger than mine happily play. It makes me feel so bad that I drive aroud looking for the least busy park and I go about 45 minutes before dark when there isn't many kids around. It's really depressing.
I think we all have those feelings. Especially when we are around other kids who are such a reminder of what is different in our lives.
I can totally relate. I've only taken Joey to one birthday party and we pretty much just sat on the sidelines, while the other kids played on all the climbing and jumping toys that he couldn't.
I hope Eden grows out of the vomiting stage, the way Joey has! I think he was about 4.5, when he stopped. I still keep a bucket by him, just in case, but he rarely needs it anymore.
I have no personal experience with the challenges involved in raising special-needs kids, but I wanted to thank you for describing it so eloquently. And to thoroughly agree that it sucks that anyone has to go through this. You're doing an amazing job under really difficult circumstances, but I wish you didn't have to -- I wish you could simply do an amazing job under normal circumstances!
Shelley
A friend of mine sent me to your blog, and it's so refreshing to read the experience of another mom like me. I have four kids (proof positive that I am insane), two of whom have medical and/or special needs. My oldest was born with such bad congenial heart defects that they first thought she'd need a heart transplant. Then they realized she didn't have time to wait. Then her heart stopped in the NICU and she was down for 30 minutes, the probable origin of her severe CP. So in addition to all the heart surgeries, we also have all the ortho stuff.
But we were told this wasn't genetic and it was fine to have other kids. We had two healthy kids, knowing we'd be better parents and Elli would be more used to the world if she had siblings. Then we had a fourth, who also has complex heart defects. The aftershocks of that personal earthquake are still going -- he'll be 10 months tomorrow and has his second heart surgery next week. Meanwhile Elli is in the hospital Right Now getting over pneumonia. I got to come home for some time with the other kids and indulge in a good cry, but I don't think I can share with just anyone how alone and helpless I feel right now -- they'll just think I'm having a pity party. I try to stay positive to "the world" because I don't want pity and don't want to be a downer, thereby scaring people off who might be able to help.
We need to build ourselves a special needs commune, where all this stuff is normal and we can all support and help each other! We could hire all the best doctors, therapists, nurses, etc and have them right there for our kids. Equipment would be everywhere, we could all have 2-hour meals followed by the obligatory cleanup. I think it's a genius plan. :)
Joy, http://joyslittlesoapbox.blogspot.com
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