the roaring lion

It lies in the shadows and  bides its  time until, out of no where it  pounces and sinks it’s teeth into my neck. I feel the wind rushing out of my lungs and my knees buckle. I crumple to the ground but I can’t cry.  My heart is pounding out of my chest and my mouth is dry.

Things change. People move on-  baby is born, a grandparent dies and children go away to college, suddenly cast as  young adults.  I love seeing the fretting parents around their child headed for their freshman year of college.  They  spend way too much on dorm room (un)necessities, make sure they have their food plan and have plenty of sweaters. Because of Facebook  I’ve had the privilege of getting  to experience first hand their pain, their excitement and their despair. It usually isn’t what they say, it’s reading between the lines of what they are writing. It seems fitting that it is fall, everything getting a little cooler, the leaves falling off the trees and trampled into dirt. That feeling of being alone and empty.

I find my life fulfilling and meaningful. I love laughter, beauty and sunlight. I close my eyes and feel the warmth of it on my face, like a touch. I pray for my husband and my children and I see God’s gentle nudging in their lives.  Today is great, the threat of tomorrow makes me turn away- I feel the pain already and I fight it away, closing myself from it.

I’ve been told that my oldest will never go to college. That he’ll never want to. That he’ll just stay at home and live with me forever. I’ll never drive away in tears as we leave him in his dorm room, awkwardly waving and hoping no one is watching him.  I’ll never complain how he comes home with bags of dirty laundry and takes all of my food or how he never calls. There is a grieving hole already in my heart and I don’t want to fall into it. I don’t know how to process sometimes- I pray about it but have no clarification. I feel so alone sometimes, people don’t understand. I don’t expect them to really, but it’d be nice to fit some where occasionally. I don’t fit with the special needs parents because so many of them have terminal children and they look at me with dead eyes and imagine a life with their precious child while I lament it. I lament not his physical presence with me, but the lack of what is NORMAL. I want him to have it all- a car, a girlfriend, college, a job and a wife. The doctor said none of that will ever happen but “he won’t really know he’s missing out.” If you knew Bear you’d know that isn’t true. He’s bright and amazing and you know what is most painful of all? His success and brilliance have caused me to HOPE and I can’t stand that. I can accept the reality, the bitter pain and grieve it, but this HOPE makes me stumble. and that’s where the lion waits, in that little area, and with a lunge I’m on the ground, wanting to feel dead inside because I can’t stand all the pain.

I decided to keep Bear home from school next year. Before you criticize me and tell me how wrong I am, know that I never took this decision lightly. I’ve agonized over it. I just can’t send him to school as a just turned 5 year old, and pretty delayed at that. What made my decision was the knowledge that I am not planing on sending Bug to school that early and he’d probably do fine.  I’ve questioned and re-questioned my motives and thoughts and there is a part of me that thinks that if he has a 1 year advantage to get him just barely caught up to his peers he’d have a chance at fitting in. Again, that painful hope. I hope he’ll fit in. I hope that he’ll have friends. AND IT HURTS ME SO MUCH.

There are no answers for me. Someone may pat my shoulder from time to time but my path  is a lonely one. I have to be strong and not think about tomorrow for now because today is too beautiful to miss. I look at his blonde curls, his smiling crescent shaped eyes and can’t help but feel a sleepy calmness envelope me like a warm cocoon. This is the happy part of my life, I’ll deal with the pain of tomorrow later.

  • http://www.RobynsOnlineWorld.com Robyn Wright of Robyn’s Online World

    {{{HUGS}}} I do know what you are feeling! In therapy the other day I just uttered those words, “it’s not fair”, about T not having a perfectly “normal” life. It isn’t often that I go there, but this has been a rough week. He is in high school and I want him to just not have all of this chaos – just have normal teenage chaos – not bipolar chaos. I think about him going to college and planning to make sure he gets his credits in this semester but the reality is hasn’t even been able to stay at school full days half the time already this year. I know it feels very alone for you, but there are lots of us here online who do understand. I promise I’m saving up lots of hugs for you for when I see you in real life again :-)

  • http://jenniferajanes.com Jennifer

    I’m SO glad you hit “Publish”! I waver between hope and despair. I struggle with not having a diagnosis and knowing what the prognosis is, what her future might look like, especially when I see new symptoms popping up that we have no explanation for. I’m also having trouble figuring out how to pay for everything she needs. I feel like, without a diagnosis, we won’t qualify for any special programs, but I haven’t tried, either. It’s so frustrating!

  • http://www.myrealfarmlife@blogspot.com Honey

    When my daughter was in 2nd grade, I was told she’d never finish school, never graduate, never hold a job, and never live alone. I said they were wrong. They didn’t know my daughter. Well, both of us were wrong I guess. I didn’t think the day would ever come when my daughter wouldn’t listen to her Mama. I thought we’d always be a team. I raised my daughter to think she was normal, and now she doesn’t believe me that she’s not. I raised her to think she could do anything, and she believed me. She is 21, has a 3 year old, and is living on the wrong path, if you follow me. Now that she is an adult, I cannot control her. I’ve never felt such pain.

  • http://www.traceyster.com Tracey Eyster

    thank you for sharing … I needed to hear that this week as I have struggled with sending my oldest to college… big hug …

  • http://TheBusyNothings.com Heidi

    Thanks for the comments! it’s painful but community helps. Honey- I hope that your daughter comes around. I can’t imagine.

  • http://www.HighHeelsAndScrubs.com Ms. E

    I feel like you read my mind and just posting. We are in the throes of getting our 12 week old son diagnosed with a rare genetic disorder and the fears you just expressed were ones I put in a blog post a few days ago. I hope we can touch base. xoxo

  • http://Grippigirl.com Grippigirl

    You are an amazingly strong women. This is the first time I have read your blog and I promise I won’t miss another. You write with passion and truth don’t ever stop that. Have faith in yourself and your ability to live life for yourself and your family. I knew when I met you at the bloggers conference you had a spark.

  • http://www.jdilday.wordpress.com Jody

    I can’t and I won’t pretend that I understand what you are experiencing, and therefore I will not offer you any well-meaning words of encouragement. I will share this . . . but you’ve probably already heard it/read it.

    http://speakinginpurple.blogspot.com/2008/10/my-trip-to-holland.html

    And I’ll pray for you.

  • http://TheBusyNothings.com Heidi

    I think that pain is pain- what I’m experiencing is weird and different but I really feel bonded to anyone who has lost a child, or parent… pain itself is such a bonding unit, I don’t think I’m special! :) Thanks for the comment and for the link! I have read (and posted it here I think) before and I read it at the right time. It makes so much sense.

  • Julie

    Keep praying for him and NEVER stop! I was told by many psychiatrists that my oldest son would be in and out of psych hospitals his whole life – would never graduate high school, never hold down a job and would probably be in and out of jail. He struggled tremendously but graduated from high school. He has had the same job for over a year now and actually has his drivers license. He hasn’t ventured out to live on his own yet but I am so thankful for the things he has accomplished already! It is hard to face the day to day situations sometimes but never give up hope! Praise Him for EVERY blessing no matter how small!

  • http://TheBusyNothings.com Heidi

    Thanks Julie! I wish you had left a link to a blog or something so I could e-mail you! :) I keep praying for him and hope that he’ll just surpass even my hopes for him. Thanks for leaving a comment!