Monday, February 22, 2010

A Never-Ending Journey

     Today, Melanie over at Better Than Normal posted "Everything Out On The Table".  She's overwhelmed, depressed, and coming to the realization that she's "not the super mom she wanted to be."

     Last week Katy over at Bird On The Street posted "Jealousy Jane".  Sharing the difficulties of seeing other families with multiple children, all healthy, and we don't even have one healthy kid.  She quickly followed up the next day with "Counting My Blessings" because she is not about being negative.  Just real.  Admitting the struggles we all face as the moms of special children.

     It made me realize I need to start pouring my heart out more - because that's kinda what a blog is for (and my big sister always wants to know 'what I'm really feeling') - and being more transparent in my writing.  Which is gonna be hard for me to do!  We are very private people.  We don't like to let everyone in on our problems.  We'll figure them out ourselves thankyouverymuch.  It's easier to pretend everything is fine, than to tell someone you feel so overwhelmed with life that you want to just run off and join the circus.

     But, Eli is going to be 5 in August.  Five!!!  Seriously.  Lonnie and I are amazed at how fast the time has gone by, and we know it's not going to slow down any time soon.  So, here is my attempt and putting it all out on the table and telling you how I really feel....


  • On a Never-Ending Journey.  Most parents have a destination with their kids.  The kid graduates from High School, goes to college/gets married/has kids/buys a house/visits occasionally.  You get your house and life back.  You get added family members.  New experiences, etc..    We don't have a destination.  We just have a journey.  Living day by day just keeping him alive via tube feeds.  We worry who will care for Eli when we are too old and/or gone from this earth.  And that's assuming he'll outlive us.
  • Disappointed that he's had such health struggles that we weren't able to do all the amazing therapies we wanted to take him to. 
  • Sick to our stomachs that he has NOT gained weight in THREE YEARS!!! 
  • Overwhelmed at the thought of how school is going to work for him.  A simple cold just put him in the hospital for two nights.  How will he ever handle all the germs at school?  We've quarantined him every winter.  He stays healthier that way.  But he needs to be around his peers.
  • Feeling like the world is very small because we only leave our town to go to Children's Hospital in Seattle.  We haven't had a vacation in 5 years.  Eli and I have gone to my Aunt's house to visit for long weekends....and for those I am incredibly thankful!!!  But other than that, we have done nothing fun as a family.  That sucks.  A lot.
  • At our wit's end because no one can figure out what is wrong with Eli.  Did I mention he hasn't gained weight in 3 YEARS!?????

  • So madly in love with Eli that we can't imagine life without him.
  • Thankful for every day God blesses us with his care.
  • Enjoy his laugh more than anything else in the world.
  • Positive that he is THE BEST kid in the whole wide world.  Just try taking his blood while he's sleeping....he'll let you!  Because he's awesome like that!
  • Thankful to have a house with a huge paved driveway where he can run in his Bronco.....his biggest accomplishment in life!


So, how'd I do?  Did I get real enough for you Sis?  :)


Candace said...

Good job, Amy! Very sincere and real, sister! These struggles are our defining moments. They eventually show what we are made of.....iron or marshmallows! It seems like we all are wrestling with the same issues just different kids. Not a struggle any of us wished to take but one that few of us would ever trade. I can see how you and Lonnie treasure your words, your pictures and your strength. He is such a jewel! Love ya and keep it up, it's good for us all to get it out!

Katy said...

You did a great job! Pouring your heart out is tough, but I really do think it makes things better--call me crazy!

I wouldn't worry too much about the weight thing. Eli is a running man in that Bronco and imagine all the calories he's burning doing that activity. Also, I remind myself frequently that Charlie isn't building muscle like a typical child, so he won't gain weight like they do either. Frankly, I think a little fat in fine, but more than that and we're just weighin' them down! Have you ever read Kathryn over at Ryn Tales? She does a lot of posts on nutrition and the g-tube. Great stuff.

Ok. You didn't ask for help--you asked for understanding. This is a tough road and I think it's just fine to admit that some times it's harder than others.

Renee said...

Thank you so much for this post. Sometimes we just all need to see that as hard as it is we are not alone in this boat we are in.

We have been trying to get Zach to gain weight for months and months and I thought we had it tough. Wow 3 years!

You are right we have been given a never ending journey, I just pray we can all do our best on this crazy ride cause it really is all we can do!!

Preemie Miracle said...

Wow.. all of us special momma's must be feeling it. I did one on feeling guilty JUST yesterday. No matter what I wonder if my feelings are "ok" And so many have validated what I feel. Thank yoU!

Michelle said...

Amy, I know all to well the heartache and emotional roller coaster that you are feeling. Today is another day. I get up and kiss my daughter on the head and start the day. I'm amazed she's made it this far, and only by God's love I'm sure. We haven't had a vacation in quite a long while either. And yet since God's mercies are new every morning I eagerly watch for His faithfulness. We're out here with you, and praying for you even when you don't know or don't ask. We have been given these children to just love them up. I see you lovin-up Eli really good. I think you're doing a great job.


CocoCayubsMom said...

OMG, I think this is your best post ever. Amy I truly believe God has a plan for the three of you and He will carry you through to the end. You are amazing and Eli is amazing, I am so glad you posted your feelings. I have often thought about how difficult it would be to be in your shoes and then I see you with Eli and you and Lonnie make it look so easy. Mom wanted me to tell you she thinks your amazing and she Loves you very much. Much Prayers and Hugs and Kisses to you all. Keep up the awesome blog.

Cjengo said...

Wonderfully written!

Anonymous said...

Amy...your the "Bestest" You did a wonderful job..though I am not sure I am the sister you were talking about??? There are just to many of us!.. hahaha

Your life changed the day Eli was born! At that moment God choose you for another journey, He found you worthy to Love in a New way, a more deeper way, one of His precious children!..and I have never seen you do any thing BUT that..Even when you are exhausted, angry, giving up and so mad you could flip someones LIVER (PRIVATE PUN) You LOVE BIG and Strongly!... and Grandma would be so PROUD of the job you are doing...You know life is measured by Grandma's stregthn right!...And BABY you got it!... One second at a time somedays..but WHO least we get that SECOND!.... I am so thankful for a Sis like you!...Blessing little one!!!!!!

Now what will your next post be?...

Anonymous said...

Amy, thank you for pouring your heart out and saying what's been on my heart that I've been unable to put into words. I like your analogy about it being a "journey" rather than a "destination". I've never thought of it like that, but that's exactly what it is. I, too, have the same worries. You are not alone, even though I know it often feels like it!

I look forward to reading more about you, your family, and precious Eli!

Anonymous said...

By the way, in case you haven't figured it out, mom2maddy2000 is Paula from Facebook.

sugar magnolia said...

Just found your blog, and I love it. Thank you for being so honest. It is hard to have a medically fragile child. My daughter is the best thing that has happened to me. As you said, I can't imagine life without her. She has taught me so much. Your Eli sounds amazing, and you sound like a wonderful, inspiring mother. Bravo!

Nicole said...

That was really beautiful Amy. Thank you. I have been trying every day to remind myself along with my children how blessed we are with health and love, and more than we know what to do with. You are an amazing momma and Eli is one blessed little boy. Thanks for being real and yet reminding all of us of the blessing you can see in your days and that we all need to look for the 'smiles' in ours. Eli's smiles are some of my favorite things to look at. Love you!