Monday, June 04, 2012


He looks ticked off in this picture but he is actually in a really good mood... jamming out to the music at his end of school BBQ.  Crew finished 1st grade and while we have been happy with the school for the most part, we are looking forward even more to next year.  I feel a change of teachers will be really good for him as we struggled with the teacher he had this year.  I could go on and on about our communication frustrations with his teacher and her lack of expertise in dealing with Special Ed but enough said already.  His teacher did not qualify him for ESY and she did not recommend that he attend the summer school program even though he did not pass his IEP goals and tested out at the level of a 13 month old.  The director suggested that I make a case about it but quite frankly I do not want to get all worked up over it so we are going to focus our time on therapy and getting stronger.

Crew is the light in my life.  He is a blessing in so many ways and I am grateful to be his mom.  I am grateful for the learning opportunities that come with being his mom and the growth I have experienced with all of it.  With that being said I have to admit this time in my life is very LONELY.  It feels like there is no one who understands it... the emotional, physical, and financial stress involved.  We are constantly stressed to the max in our home.  It takes all four of us to take care of his needs.  The amount of time involved calming, feeding, therapy, toileting, entertaining... it is exhausting.  Crew's doctor at Primary's is just as perplexed as we are.  Currently he is taking medication to help him sleep and yet I am getting up at all hours of the night.  Several times a week he wakes before 2 or 3 AM and is awake for the remainder of the day.

This loneliness or sense of isolation is hard to ignore and it takes everything I have to keep from getting bitter.  Living in an area where people are generally service oriented and watching people dish out service left and right to each other all the while ignoring our existence.  Well... that's how it feels anyways.  I have uttered countless prayers asking for forgiveness for the negative thoughts that I have about it.  I have fasted and I have gone to the temple hoping for some peace which has helped.  I have made more of an effort to serve those around me and within my church.  I'm trying to accept that we will just continue to go through this alone.

Despite my lack of sleep, I have manged to finish the training program for a marathon that I am registered to run on Saturday.  It has been a rough go this time around.  I've been battling several injuries over the past 6 months.  Still... at this point wondering if my body will hold up for another 26.2 miles.  Even considering getting a bone scan on my big toe which has been bothering me.  *sigh*

So many of you are dealing with disabilities or illnesses which are more involved than what we have going on.  To you, please forgive me.  I apologize for being such a whiner.  I have not posted for months due to this.  It just isn't fair for me to complain when so many others are going through such difficulties.  How do you do it?  Do you have any suggestions for me to get over my loneliness?

A couple weeks ago in my church where I co-teach the 16-18 year old young women, it was brought out in a lesson the importance of journaling.  It was suggested that it is good sometimes to write down the frustrations as well as the good things... for posterity sake.  I hope in doing so I haven't just shot myself in the foot.  If so, it will just be another hard lesson learned.  LOL.


  1. Hi Mel! I too have a baby with CP. I totally understand your fustrations. What you are feeling is totally normal because you are human. I think so often we feel bad about the way we feel and when it comes from an honest place, I feel its OK. Its just important to not dwell in those feelings too long because we can get stuck there. Not to get too Biblical on you but all through the Bible God used imperfect people to do great things. Take strength in the fact that you are doing this. It may not be easy, but you are doing it and thats what counts. I am new to the blogging world and dont know if this is "PC" but here is the blog I recently started. Maybe we can encourage each other. God Bless.

  2. Thank you Inyka! We can do this... thanks for your support!

  3. Big hug for you Mellie. I love you loads.

  4. Donna1:02 PM

    So nice to see you back and adding to your blog. I have a 7 year old with cp and have followed you since forever. The way you write is just so downright human and real and what you write is so relevant and similar to what we deal with as well. I too have become a corresponders nightmare - so few and far between because there always seems to be issues to write about. But, you know, it hasn't done me much good in retaining my friendships so I am seriously thinking about just getting on with it, writing down what our challenges and stresses are and letting my friends deal with it how they will - I hope to get back to having friends again and hope not to feel so lonely. I would love for my friends to understand how demanding raising a special needs child is and how much I love to see anyone offer Timothy a smile and a hello (for example) or praising him for something. See, ... I whine too :) Take care, and keep posting!

  5. Anonymous11:05 PM

    You are sooo not alone. I read your blog and it could tell our story as well. We, too, have three boys the youngest has CP. However, we also have two little girls to add to the chaos. We struggle daily just to get through the day and then the night hits..... We struggle with sleep and toileting and feeding and school and that's just one kid. Then how do you keep two big boys happy and involved in sports and activities while dealing with everything else. And yes, thd guilt of so many others having it so much worse. My son had SDR and tendon lengthening last
    year. We stayed at the Ronald McDonald house whilehe
    recovered and received therapy. It was the most trying time of our lives yet felt like we had to "suck it up" as many other children staying at the house were fighting
    Cancer - something far worse than CP. Now, we are home with him and everyday seems to get harder. I can accept that this is how he is but that doesn't help with
    the sleepless nights and the exhaustion of caring for him. As for people asking how he's doing, I find many people now just tell me how he is! " Oh, he has come so far
    since I've seen him last! " I want to scream, who the &@&% are you kidding ? The kid has gone backwards. I struggle how to have sympathy for him. Everything hurts all the time and I just don't want to hear it anymore yet my heart breaks for him! Yikes! There is my rant- you are not alone!! Lonely - yes!


Your Thoughts and WhatNots are welcome here:)