Monday, February 28, 2011

Serious "Meat and Potatoes" Thoughts and Conversations

Two things are on my mind tonight.  1st here are the 2 quotes.

"I have laid my son on an operating table and kissed him as he fell asleep. I have handed him to a surgeon too many times. I have learned more then I ever thought I could. I have cried more then I ever thought possible and celebrated victories that I never would have thought of. I have walked a road I never knew existed. I will walk this road forever. I am a special needs mom. I am Eli's Mom."
"the older 4 are the ones who have to watch him suffer and eal with and grieve for the potential (I'd say inevitable) loss of a sibling....this sad state of affairs."  This last statement follows a website sent to me for children's hospice. 

Both of these things got me thinking....alot.
Eli is sick.  There is no doubt about it.  Eli has been sick from birth, and Eli will remain so.  There isn't a cure, a fix, no treatment, and no magic wand.  I wish there was, my husband and my children wish there was.  Everyone who has ever met Eli, everyone who has followed our families journey, read our blogs, cried with us, sat at the computer waiting for updates, prayed for us, supported us, or gotten to be a part of our journey all wishes there was.  Everyone who has their own child similiar to Eli, wishes there was.  But lets face it.  There isn't, and there isn't a damn thing we can do about it....
that being said there is SOOOO much more to the story.  This evening I watched Eli crawl after Ari as they played blocks.  I watched him curl up with Jace watching intently as Jace played nintendo talking to Eli about all the star wars characters.  I listened to Eli bust up laughing at Emily as she shook her pony tail back and forth.  His curiosity as Ben hides toys under his blanket and then makes them reappear.  I hear my kids calling out goodbye to Eli as they run out the door moments before missing their bus.  I see them peaking into his room at night before bed to kiss him goodnight one last time before he falls asleep.  I watch them.  I listen to them.  To them Eli is their brother.  They cuddle him, play with him, and get annoyed with him when he grabs their things from them. 
I also listen to Jace as he wants to invite a boy from school over to his house.   A little boy who can't talk and is in a wheelchair.  Jace says he doesn't have many friends, but that he is this little boys friend.  That he doesn't care if he's different.  He says they talk together in their own way, smiling and laughing.  I hear Ben talking about a boy in class who has only 4 fingers.  Ben talks about how it's different but it's ok and that he's ben's friend.  I watched Ari at the hospital last week cuddling up with her little brother.  I watched her oblivious to all of the medical equipment around her.  She didn't care if they had IV's or wheelchairs.  She just hung out and had a good time.  Emily can go to school and talk about her brother and how very much she loves him and how special he is. 
My kids are growing up learning how to love unconditionally.  They are learning respect.  They are learning determination.  They are watching their brother survive ALL odds, and they are supporting him and loving him thru it all. 
Has it been hard, sure.  Will it get harder?  Maybe.  But why only do it if it's easy?  What is there to gain at that point?
I remember being awake with Jace all night for months on end as he threw up over and over and over.  Sometimes 13 plus times a night.  I remember being so careful with him because the moment he cried he got so sick.  I remember medication trials, food trials, trips to KC to the children's hospital to try and find out what was happening.  It was rought.  It was exhausting.  We gave up alot of things as a family, foods and events because of how hard it was for Jace.  It's been a long road learning what is best needed for Jace and how to best deal with his cyclic vomitting syndrome, GERD, ADHD, and his food allergies.  But it has taught Jace AND the rest of us so dang much.  Jace is amazing at reading his body and knowing what he can and can't do with it.  He's incredibly understanding of people with stomach issues and food allergies.  He's been amazing with Eli and understanding about Eli's "special tummy"
I remember Benjamin as a baby.  He would sleep all day, never wanting to move.  He couldn't walk, crawl, or talk.  He had to be pushed to eat.  He began therapy at a very young age.  As he became older things got worse, the fits were out of control.  Then the diagnosis, autism.  It was hell,  no doubt about that.  Ben had inhome therapy 5 days a week.  it was rough on all of us.  He disrupted life.  We had to leave tons of activities because he couldn't handle it.  Now ben is working in school, making friends.  He's helpful when he wants to be.  He can be the most caring little boy in the whole world.  Helping Ari clean her room, taking Jace's toys down to his room before he gets in trouble leaving them out.  Patting Eli on the head and giving him kisses.
Ari was a struggle unto herself.  She too was in therapy to help her with walking and crawling.  She has sensory issues that take work to overcome.  She is being tested currently for hearing issues.  Again she is sweet and loving and caring.  She can run and climb trees with the boys, no problems keeping up.
What if we hadn't have put that time as a FAMILY into those rough patches?  What then?  We do it because we are FAMILY and that's what we do.  We don't look back.  We don't wonder what if...We don't wish it different.  We all have our issues and because it's us it's just NORMAL.  That doesn't always make it easier, but it's NORMAL for us. 
We have made it this far, it's been an uphill battle, and we sooo aren't done.  But we will continue fighting thru it together as a FAMILY because that's what you do for each other.  Nobody left behind.

If you can't accept this, if this is a problem or an inconvenience then this isn't the journey for you to be on.  We make it a priority to surround ourselves with people who will delight over 1 extra hr off the pump, 1 increase in calories that didn't cause our GI system to shut down, 1 crawl forward onto the wood floor, 1 turning of the head with sister calls his name, 1 week home together as a family.  This is our journey. 
We are ready....are you?


Christie said...

What does an extra hour off the pump mean? I'm not trying to be rude, or anything.

Jess said...

Beautifully said Heather! The journey is not always easy, but totally worth the work!!

Jess and Madie

Anonymous said...

This is the most beautifully written declaration I've ever read. I learn so much from you. Thank you, and I wish your family every blessing, large and small.

ejbaemommy said...

Christie not rude at all! We welcome any and all questions! We want people to understand and learn.
eli is on his pump, which feeds him, for alot of hrs. His body can't handle alot of food at once, so he has to get a little bit of food all the time. He used to only be on his pump getting fed for a little bit but can no longer handle that. Then he went to 24hrs a day on the pump getting feeds. Then we got back to 22hrs a day, now we are at 21hrs a day. This means that Eli gets 3 hrs a day where "he's got no strings to hold him down". He is completely able to roam free without being attached to any machinery. The bags are heavy and hard for him to pull around.
Thank you guys!!!

Christie said...

I kind of wondered if that was what it meant. I can't imagine a little person carrying around all of that equip. Great news that he is getting around so well.

Anonymous said...

This is a beautiful declaration. Your family is wonderful and strong and loving, and you are so lucky to have each other.