Friday, July 29, 2011

Funky town ...



Sometimes, we all get in a funk. I'm in one now, up to my shoulders. The easiest thing to do is hide myself away in the house, soak up the misery, and wait it out. Unfortunately, Emily is very high needs and soaking in misery is not an option. Rather, I am running around all day doing her medical care and trying to sprinkle some play and love and cuddles in, while splashing in the misery puddle.

I know it's not easy having a special needs child, and I know it's not something to take for granted. There are a million amazing wonderful fantastic things I have gained by being Emily's mom.

But sometimes it's just HARD. It's summer, and everyone around us is running around and doing fun things. The fair is here, but Emily wouldn't like it. She can't handle the heat, she doesn't eat the delicious and disgusting fried foods, she hates the smell of animals, she wouldn't be able to ride hardly any of the rides. She gets bored and grumpy very easy. We live mere miles from the beach, but there's no way we can go there. Emily hates sand, she hates water, not to mention that she has a central line that would NOT be good to get sand/water in. We would have to just sit on a blanket (after carrying here and all her connected accessories because her chair can't roll on sand). She would be miserable, and in turn so would we.

The biggest frustration is that we can't just pick up and go. Most people with kids can, even though they might think they can't. You grab a diaper bag or a bag of snacks and you go. In my case, I would have to pull up meds for every few hours, make sure her TPN is running okay, get her IV bag ready for the afternoon, and prep the next round of TPN. Not to mention figure out where to change her diaper/clothes when she has an explosion, and how to clean her up if she retches all over herself while we are out.

I'm just frustrated. I know that I am incredibly lucky to be Emily's mom, and I wouldn't change it for the world. Please don't tell me how blessed I am. I know. I am also tired, sad, frustrated, and bored at home.

And if you are one of our friends in real life and reading this, PLEASE do not be upset or offended by this. It happens every day, whether you invite us somewhere or not. PLEASE do not stop inviting us to every thing. The rare times that I *CAN* get out and go do things with you, are worth all of the "No, sorry" replies. ((love))

20 comments:

Denae Ayers Carlton said...

As I read through the tears, I feel your pain in a different way. I don't have as many lines as you do but the equipment and baggage I do. I wish we really did live close enough to invite each other places so we could decline each others offers! It would be great fun :-) Who else could laugh until you cried, real tears- not laughter tears but tearful tears? Parents like us! Love you so much!

Zoey's mom, Heather said...

Sending you peace and courage in these moments, for I really and truly do understand.

Kisses and love to sweet Emily and hugs to you my friend.

Kate said...

No way would I give you the old platitude of, "You are so blessed." Whatever. Yes, EMILY is a blessing, but no, her medical crap is NOT. It's a hassle, and the work involved in taking care of a chronically-ill child is daunting. (((( hugs ))))

For whatever it's worth, I'm in that misery puddle with you. My son has recently been transitioned to hospice & though he *could* go out if he wanted to, he doesn't want to. He stays in one room all day long, which means I spend most of my days & nights in that one room, too. He also has a bunch of lines & tubes & oxygen & pulse ox & the other junk you speak of... and like you, I envy mothers who can just decide to go somewhere and GO! The amount of planning that has to go into taking my son anywhere and knowing that he, like Emily, will probably not enjoy the activity and therefore neither will the rest of us, makes venturing out a huge ordeal.

Anyway, sorry to go on & on. I just want you to know that others reading your blog DO understand, and though we can't take the stress from you, you're not alone in going through everything you do.

Many, many (((((HUGS)))))

WhitneyBooze said...

I hear ya!
It sucks!
And yes,my Suzy IS a blessing (yadda yadda yadda).....
but she is also a pain in the rear end. And she is slowing life down for not only ME but also my 3 older daughters.
But, like you, we wake up each day and put a smile on our faces and make the most of it.
I wouldn't trade Suzy for the world - - but I WOULD trade all of her disabilities in a heartbeat. We don't have all of the medical 'stuff' like you have with Emily. And I'm sorry that you do. It certainly makes it harder I'm sure.
But Suzy does have lots of sensitivites. (noises, heat, etc). And she is completely disabled so we can't just 'put her down' and she is 4.5 years old and 39 pounds. She can't sit - so we lug that damn wheelchair everywhere. ANd she is always bored so she is always whining. (can't say that I blame her).... food and her DVD's entertain her.
So, yes it's a bitch. And I appreciate reading your entry that was REAL!!! I get a little sick of reading journals where the moms carry on about "life is so glorious and such a blessing" blah blah blah
But sometimes we just have to pretend. And, like you, when I force a smile on my face I actually and honestly DO feel better.
And when i see my sweet sunshine laugh i kowo it's all worth it. Thinking of you today.
hugs
Whitney - www.suzybooze.com

Cammie Heflin said...

I hear ya Sarah. We had those days when we had an O2 tank, tubing, feeding pump, colostomy bags, meds, extra clothes and all of the things to fix the 2 bags when they both decided to come off. I am very fortunate that now we are just down to g-tube supplies. However, Addy cannot handle heat either and there are so many things that we just don't do because Addy would be miserable. We don't have family that will keep her for us either so we, like you, aren't always able to get up and go (however not NEARLY AS MUCH!). Hopefully someday Em will improve so she can enjoy more things, it's so hard.

Lori said...

I remember all those things so clearly. We took our Megan to the places that we could go to without her having to be in the sun and such. But, it was a ton of work and took forever to set up for our trip. It was worth it though. I miss her and all those things that were a part of her - because she was still with us. I feel so lost without her.

Michelle and Sean said...

Completely get it! You need to have a place to vent, especially to people that do have similar situations. No judgement. We know you know how lucky you are. We are all lucky to get to care for our special needs kids even though my Maggie is gone now. It doesn't mean that there isn't frustration at times still, watching doctors not be able to figure out what is wrong with your child and watching your child progress in the wrong direction.

I really hope people get that! I am praying Emily can get on a good path of starting to feel better soon!!! Hugs!!

Cathy said...

Girl you speak from the heart. I think even though none of us can imagine life without our special child it can be frustrating and very hard. I call this feeling you speak of flat. I don't like it at all even though I treasure Annabel. Know that you aren't alone!

doorless said...

I don’t have all the tubing , etc that you have with your daughter but have three total care children. Two have J tubes and one g tubed that I am doing slenderized diet for. None can propel their wheelchairs per self and none stand for pivot transfers. The oldest is 23 and when she was younger we used to be able to get out and do more because I could lift her without a lift and pushing two wheelchairs was easier. Now her wheelchair weighs 96 pounds and she weighs99. It is horrible to push on carpeting which our hospital seems to like! It takes several hours to get ready to go anywhere and by the time I have all three loaded I am tired! If we wanted to go to church I have to get up by 6 to just give meds and get them ready and in the van then repeat the process after church. So we don’t go any more .
I used to miss going places and now if I can get someone to come over and help we do go and do something. It doesn’t happen often. Also friends have mostly stopped coming around . One because they live an hour away and two we are just not fun to visit.
We had to move away from my friends because the oldest was very ill and we needed to be closer to the doctors and hospital. she has gotten much better since we moved. It used to really bother me but I don’t let it get to me anymore. I look at my friends lives and they are so much different than mine. Mine doesn’t seem fun like theirs but, it is rewarding. When one of my girls have a good day or do something neat like smile or laugh it makes my day.
You are a good mom and doing just what God would want you to do for your daughter.

Elizabeth said...

I know exactly how you feel and have felt the same way, off and on, for more than sixteen years. When it comes, it's never easier -- that feeling -- but it lifts, eventually.

Love and camaraderie --

Debbie said...

We are living in the same funky town...I am right their with you! This was NOT the way a summer should be spent...while the world is vacationing, sunning, beaching....I am hospitalizing...my healthy kids robbed of summer fun...

Wish I could buy us a one way ticket out of funky town...

Hugs my friend. Xoxo

Lacey said...

It makes me crazy when people try to make me feel better by saying Jax is a blessing, yada yada. Of course we know this, and we do the best we can to keep life normal. We are so much the same. We pack up all our crap and go to Disneyland, because its a magical place, and I want to be as "normal" as possible.
But there are some days that I'm just done! I'm done with the meds and the suction and the feeds and oxygen and everything else. I'm tired of getting nasty looks when I have to suction my child in a restaurant while they are eating. The beach is one thing I can't wait to be close to. But I can't push his chair on the sand, and carrying him and all his crap to the water is exhausting! I lose 10 pounds just walking through the sand with him! (maybe I should do it everyday!)
When I'm down there we will make sure to leave the kids with the hubbys and go out!

Colleen said...

I know what you mean. Big sister wants Isaac to go to the pool with her and that's just not possible. It's frustrating that people take for granted going to fun places and not having to pack all the gear or worry about tubes. I hope you have some fun memories this summer, even if it's at home being a family. Sometimes those are the best times:)

Bronx Cataldo's said...

So far this year I have gone to the beach one time. It takes great planing and packing to go. The other day had tickets to go to the Gardens the Smurfs were there. Ended up not going because it was a crappy day for Finn between him throwing up and seizing. I had an irate 8 year old on my hands but you know she never once blamed her brother for not being able to go. It was my fault cause I didn't plan the day out better cause he could have stayed at home with the nurse.
Hugs lovey

Jenny said...

(sigh) I love you.

The VW's said...

Big Hugs for you sweet friend!!! You are not alone! Hang in there super Momma! Thinking of you and praying!

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Alicia said...

Thank you for your honesty. It IS a pain in the ass to have a special needs child. I know, and Marissa, even when she had her trach, was nowhere near as complicated as Emily.

Hugs to you friend. I pray for you and that sweet girl everyday.

Bellismom said...

Sending prayers your way. I know that frustrated feeling but certainly not to the extent that you do. Keep your head up!

SECRET PEPPER PERSON: said...

Yes I too know exactly how you feel. Thanks for sharing as it's honesty that touches your readers who know the life and it's a necessity for those who do not know the life to be informed.