At least I feel like an Evil Step Mother....

[evilstepmother]

I feel like the Evil Step Mother to a sweet and loving 3 1/2 year old little boy named, Eathen! Even though my "husband" has told me I'm not... Eathen is the resident dialysis patient in our household of four. There are two boys (My "husband", Isaac and his son Eathen) and two girls (Myself and my daughter, Sophia, 22months old). I keep putting "husband" in quotes, seeing as how we can't afford to get married, I make too much to marry the love of my life and us still keep Eathen on Medicaid and SSI to cover all of his bills, yet I don't make enough to come close to covering all of his bills... I first met Isaac in middle school drumline, many years ago, we were instand friends, however, we graduated high school, went on our way and married some "totally awesome people!" Although our first choices weren't too great we both got the best presents: wonderful, beautiful, smart kids. We have both been divorced and met back up on myspace and have been connected ever since.

Eathen, my wonderful Eathen, everyone says he has started his own text book w/ everything he has gone through in his short life. We are looking at surgery #37 on Tuesday, Sept 23rd to get his hip "constructed" as his dad puts it, the Dr.s call it reconstruction, but his thoughts are that if it was never right to begin with how can it be "re"? I have only been in his life for a short period of time and have signed up for the long haul, but in the mean time, I'm wondering what I was thinking... I wouldn't change anything, but I seem to have changed everything for him, and let me tell you, he has told me in more ways than one. You see I have high expectations of Eathen, that no one else seems to have, he will out live us all and be the one that dies from swimming with great whites and then being eatten by one, not from any of his millions of medical reasons too, he is too strong headed for that, in fact I think everyone in our house is too strong headed for our own good!!! I have seen him be only a few hours out of surgery that "chiseled" out a kidney and gave him a Perineal urethrostomy, bouncing around in his ICU crib amazing and entertaining nurses- and asking where the wagon is to go for a ride. The ICU doctor asked why Eathen was even in ICU... he was there only for precautions.

Eathen's egg donor, did lots of Rx drugs when pregnant with Eathen, and then there is the whole some of it seems to be genetic, it depends on who you talk to as to why he is the way he is, but here goes:

In the womb, at 20 weeks, his body measured 18 weeks and his bladder measured 22 weeks. He has an amniotic fluid level of ZERO- his egg donor lived in a bath tub to keep Eathen around.
Once he flipped around to the right position, they went in and drained his bladder with a needle from the outside, then they went in and put a catheter from inside his bladder to outside of his stomach, but still inside the amniotic sack.
Then Eathen was born on February 5, 2005 at 35 weeks and two days
With in hours the Doctors found another problem, called a TEF- Trachea Esophageal Fistula- that was repaired at 23 hours of life, during that surgery they also created a vesicostomy and placed his peritoneal dialysis catheter
At 5 days old he started Dialysis
Eathen has also been diagnosed with Prune Belly Syndrome, multi systic dislastic kidneys, bi lateral hip dysplasia, VATERS syndrome, reactive airway disorder, urethrethral atresia,hypo thyriodism, and is considered to be 6- 18 months delayed, depending on what aspect you look at on Eathen (also known as EE- to his little sister).

Eathen has a love for people (mainly nurses- he LOVES pretty nurses!) and all things music! He thinks any guitar he sets his eyes on is his for the playing,  thinks his daddy's drum set is just an everyday toy than any 3 1/2 year old should own, and will rip a trombone out of any unsuspecting "poppy boy" (grandfather)'s hands that he can. He is the light of many peoples day and our lives.

The reason for the Evil Step Mother title I have bestowed upon myself is as follows:
Eathen can walk- with the aid of a mini walker, but even one carries him, because he takes too long to get places- I make him walk (mainly because he is too heavy for me to carry and then I have a 22 month old that thinks she too should be carried at the same time by me) but i don't expect him to walk a mile, just short distances and I think he should at least try and if he is too tired, tell us and we will help, IE carry him or stroller him or the likes.
Eathen has a fairly broad vocabulary- but not many ask him to use it, they let him get away with pointing and whining until he gets what he is after- I ask him to use his words and am just as bull headed as he is about not using the words, it ends normally only by someone else in the room giving up and getting it.
Eathen can eat food- But won't--- refuses too! I'm sure because we pump 2200 calories into his g-button every day, but in the main meal times are horrid, with a bored as hell, yelling at the top of his lungs for your attention little boy at the table, oh the best part, if yelling at you doesn't succeed in the attention getting then he starts shaking your arm everytime you have loaded food to your fork/ spoon causing your food to land anywhere but your tummy. Most family members just accept this and ignore- I tell him to use his inside voice and ask him to stop shaking people that it's not nice, this causes glares from across the table from him, normally ends in someone sticking up for him telling me and his dad that he didn't mean too, and that he is sorry.
All and all I guess I just expect too much, and probably am evil for asking so much, but I just worry about his future, what happens when he enters school and society with this attitude/ lack of respect to other people and general all hail king Eathen requests?

[jbeany]

Discipline is not torture, and you need to get the rest of the family to back you up! 

Welcome to IHD - I hope we can help you cope with your busy life!

[Wayne]

Welcome aboard!  Eathan does sound like a cutey...and don't be too hard on yourself, it sounds like you only want the best for him.   

[okarol]

Eathen is lucky to have loving encouragement. 
I remember recently reading about another prune belly baby named Gavin http://www.savebabygavin.com/ - he got a kidney transplant earlier this year.
Welcome to IHD - there are lots of great people here and good information too!
 

okarol/admin

[Joe Paul]

Welcome evilstepmother, good to have you aboard.

[Bajanne]

Welcome to our community!  We are glad that you found us.  If all stepmothers were like you, we would not have had some of the fairy stories that we had.  I commend you for looking out for what is best for Eathen.  Some day he will thank you.  This site is a great place for information, support, venting, and even a little fun.  Stick around, read and post.  You will find that we have become a genuine international family.
Looking forward to hearing from you


Bajanne, Moderator

[monrein]

    Glad you joined us.

[willieandwinnie]

evilstepmother. WOW! Bless your heart is all I can say. We are a great group with lots of information and enough support to go around. Hope to hear more from you when you have time. 

[peleroja]

Oh my goodness, you sure have your caregiving cut out for you!  I admire you profoundly for all you are doing, not only for Eathen, but for the entire family.  Please keep coming back and posting how things are going.  I'm sending your whole family lots of warn fuzzies.

[Romona]

 

[Sluff]

Welcome to IHD Evil Step Mother,

Most people feel sorry for all EE has been through so they try to not expect as much from him. To the contrary he should be expected to converse and do the same things as any normal 31/2 year old should, with health limitations taken into consideration. The day will come when he must face others who have no stake in his personal feelings or limitations and will expect his behavior to be the same as others. It is much easier to form him at a younger age. There are no perfect parenting skills out there, it is basically a case by case decision by the parents. I hope things work out well for all of you. Thanks for being there for EE and his Dad. They need you.

Sluff/Admin

[annabanana]

  evilstepmother!  Sounds to me like you are doing a great job! You just might be EE's fairy godmother instead instead of evil step mother. Glad you found IHD!

[paris]

Glad you found this site.  You are doing a great job!  I think children live up to what we expect of them.  You expect him to be and do all he can.  Every child should have one person that knows they can do great things and you are not expecting too much of Eathen.  He must be a strong little boy to have survived all he has gone through.  We are here for all of you when you need support or just someone to listen.    We'll keep all of you in our prayers on the  23rd.   

You wrote a great introduction!   The owner of this site loved good intros and yours was excellent.  Thanks for sharing your story.  I think you are a hero, not an evil stepmother!! 




Paris,moderator

[thegrammalady]

glad you joined us. in your situation i'd be known as "wicked witch of the west" because i'd ban anyone from the house that didn't make eathan use words, walk as far as they can and generally try. they aren't doing him or you any favors. one of these days he's going to be to big to carry and too weak to walk even using a walker. as a mother of a severely handicapped child, i can say, stick to your guns and wear your wicked stepmother badge proudly. keep up the good work. come here when you need to, rant and rave and we'll understand and love you all the more for it.

[lola]

 

[drinkboy]

Glad to have you as part of this community. Welcome aboard!!

[lruffner]

Evil- WELCOME!

You have your hands full and a lot on your shoulders, but be confident that you are doing better for EE than anyone else. I would hope that any parent/ extended family member would want any child to learn to be sefl-sufficient / independent as they can be, especially those with extra burdens. If no one does it now, he will never know how to get along when there is no one there to take care of him. You ARE doing the right thing, so sleep well at night 

[mcjane]

Rent the movie The Miracle Worker, the true story of Helen Keller & her teacher Annie Sullivan, & have the family sit down & watch it with you. Maybe they will understand what you are trying to do.

Imagine what Helen Keller would be if not for Annie Sullivan. She had the good sense to remove her for awhile from her over indulgent family & enabled her to have a life that was remarkable.

Maybe you can turn the whole family into Annie Sullivans.

EE is lucky to have you.

[monrein]

What a fantastic suggestion mcjane.   

[G-Ma]

Welcome....you are doing a fantastic job, do not second guess yourself...next step is set up rules for how other people act in EE's presence and keep the structure for him and them....I know it is difficult but you can do it....He will not live in a happy world when he is grown if he is allowed to act like this at 3.5.
Ann

[Rerun]

Welcome ESM.  Sorry, but I'm going to be EE advocate.  You didn't talk much at all about the kidney patient part.  Maybe you need to read up on JUST the kidney part.  We are exhausted most of the time.  We who have hips can only walk a short distance.  When you do make him eat is it on his renal diet?  There is a LOT to this kid to feel sorry for.  I don't think he will out live any of you.  Read up on that.

[evilstepmother]

Welcome ESM.  Sorry, but I'm going to be EE advocate.  You didn't talk much at all about the kidney patient part.  Maybe you need to read up on JUST the kidney part.  We are exhausted most of the time.  We who have hips can only walk a short distance.  When you do make him eat is it on his renal diet?  There is a LOT to this kid to feel sorry for.  I don't think he will out live any of you.  Read up on that.

Rerun- not sure whatelse you want to know about the kidney patient part- i gave his history and he is 3 1/2 years old, I can only go back so far... there is tons to type, and I felt I had already written a book. Plus I haven't been around for everything, hence the STEP mother part of the title.
Eathen can walk- with the aid of a mini walker, but even one carries him, because he takes too long to get places- I make him walk (mainly because he is too heavy for me to carry and then I have a 22 month old that thinks she too should be carried at the same time by me)  but i don't expect him to walk a mile, just short distances and I think he should at least try and if he is too tired, tell us and we will help, IE carry him or stroller him or the likes.

Plus I never once said that I make him eat any food, all I said that dinner time is horrible because basically he is bored and his way of conveying that is yelling....

AND WAY TO POP MY FREAKING BUBBLE OF ALWAYS LOOK ON THE BRIGHT SIDE OF THINGS, YOU DON'T KNOW, HE MAY LIVE THAT LONG, AND WHY CAN'T YOU TRY AND BE A BIT POSITIVE? 

[lruffner]

Sorry about the tack strip in the middle of the road  Hang in there, because there is a lot of SUPPORT from folks on here. How is Eathen today, by the way? Keep looking at the glass half full, even if it springs a leak. 

[evilstepmother]

Thanks for the words of encouragement- eathen is wonderful!!!! they just got a room at hospital (I'm stuck at work- boo). We still don't know what time the surgery will be tomorrow- but he got the room closest to the nurses station to entertain the nurses... thats what he was specifically told when given the room this morning. He was so excited about going this morning, he managed to climb the rails of his hospital grade crib at the house, before he was off dialysis this morning, and landed on the floor- EEsDaddy assures me that he is fine, and last I could hear from him in the back ground he was too worried about telling one of the nurses about his guitar (guess I should take it up there, he WILL have arm movement- cast should be from armpits down)...

[Rerun]

ESM.... that is what this site is all about.  Telling the truth and not being SHOUTED at for doing it.  I think you are making lite of his disease.  He is on his 37th surgery for crap sake.  There is no future in dialysis.  You can look at that glass as half full if you want to.  Sorry if I busted YOUR bubble.  Who is this about anyway?

Best of luck to EE on his surgery today.  I know... from experience .... it is not fun.

                                               TO I HATE DIALYSIS.......

What does his potassium run?  What about his phosphorus?