Monday, June 20, 2011

Our very challenging and difficult day at Disneyland with Luke: -(

All the planning in the world can not change the fact that Luke can not tolerate the heat and he does not like being in his stroller/wheelchair for hours. After staying up way to late getting as many details together as I could for our day at Disneyland and then getting up by 6 am to get ready to go, we still had to come back to the trailer, Luke just could not handle the heat. Gordy stayed at Disneyland with the kids, while I decided to bring Luke back for his vest treatment, to give him a break and to feed him. To say this has been a challenging day is putting it mildly.

The memories of when we where here with Luke last time keep coming to my mind. Our family had gone to Disneyland a few weeks before Luke's accident and I keep thinking about the last time he was there, running, playing, laughing, having the time of his life. Days like today make me realize how much our lives have truly changed, nothing and I mean nothing is easy anymore. I know that I need to get over it and just try to enjoy the day we have, but the tears keep coming. I was so stupid to think that we could take Luke to Disneyland in June, when it's hot, for that matter any day at all, it's just not something that he will ever enjoy again, until God heals him.

I try so hard to keep a good attitude, but today has not been easy. I keep asking myself when am I finally going to realize that life can't go on as if I had a "normal" child. I know that I need to suck it up and get over this, because I don't want to ruin the day for the rest of my children. I'm so sorry for this post, because I realize that I'm whining, but please remember that this is my journal of our journey and I hope and pray one day I will look back on this day and remember some of the good of the day instead of focusing on all the challenges.

I'm going to try to take Luke back at 5:30 for the parade and then Gordy will bring him back after that. Please pray that things will get better today and for the rest of this trip to be better, because while we've definitely had a few good days, to be honest most of our days have been full of lots of very challenging difficulties.

Love in Christ,
Luke's Mommy Sue

PS Being the positive person that I try to be, I hope and pray I can update you later with better news, sorry this was such a downer post, just keeping it real.

13 comments:

Michelle said...

Your life is changed. However when we who are your friends hear about your sadness and pain, and how you are struggling, we step in the gap and pray for you! That is what it means to be a Christian. We are here for you. The trials of this life do sometimes overwhelm. I've been there too, yessireee. Please know that we are here for you, praying God's strength into your life and comfort for you and Luke.

Hugs from here,

Michelle & girls

Lori in KY said...

Sue,

Don't you apologize for a SECOND about being truthful and honest. You have no idea how much other moms with kids who have so many challenges NEED to hear you say, "This is hard and painful!" Not only that, but like Michelle said, it's only when you acknowlege your needs that your friends (in real life, or in cyberspace) can come alongside you!

Praying you'll find peace and will be blessed with some sparkling gems of special times with your family during this trip!

Christine said...

Big hugs! I am sure it is not easy, but you are an inspiration-- remember that!

Anonymous said...

There ain't but a couple people reading this that could do what you do , me included , my heart hurts like crazy when I read this ,, your only human , I don't know how you do it , I guess when you look at your boy , you just keep going .

Anonymous said...

Thank you for sharing from your heart. I am wondering if you would be able to get respite care for Luke? If he doesn't tolerate heat, travelling etc.could you not leave him for a week and enjoy the rest of your children and return refreshed to face the daunting challenge of caring 24/7 for him? If cost would be a problem it would be totally appropriate to ask your cyber friends to help cover the fee. I would be happy to, and I'm sure others would be too. You deserve a break and your other kids deserve happy Mom and Dad memories too. I hesitate to send this because I don't have a handicapped child, so I can't know what it is truly like. I am sending this comment with love. I am praying that you'll find joy in the rest of your vacation.

Kate said...

Oh, Sue, bless your heart. It is so, so hard to have these moments when you really do clearly see how different life is. Our life with Noah is our normal life now and we don't often think too hard about how different it is . . . then something forces that clarity, and with the clarity comes pain.

You're not whining, sweetie. Of course you wanted to see Luke have a wonderful time. Of course you wanted to experience this with your family all together, and of course you wanted to make happy memories. That doesn't make you a whiner - it makes you an awesome mommy!!!!

Hoping and praying for happier days ahead.

Blessings,
Kate

Nicole Self said...

I see no need for you to apologize. We all have our good days and our bad days and I love the fact that you feel comfortable enough to share with us how you honestly feel. You are such a strong, beautiful person and every time I read your blog, you inspire me and I've never even met you. We will be praying for happier days to be near.

The Self Family

Teena said...

praying for you. Its been a long journey Sue... you can keep it real any time... God is still working His miracle...

Much much love,
Teena

Jean said...

I get into these funks, too...when Annie was alive, I just remembered all the things she USED to do before her brain injury, and when she died, I felt bad that the whole stinking thing happened. I am right there with you, Sue.

I'll pray strength, endurance and comfort for you, Luke and your family today...keep looking up. We will remember this as a blip on the radar when we're in heaven--with our HEALED kids.

Love,

Jean

Kate said...
This comment has been removed by the author.
Kate said...

Just wanted to remind you that we love you and pray for you and for Luke daily. (((hugs)))

Blessings,
Kate

Lynne in CT said...

It's been a few weeks since you've posted... How's the trip going? Or are you home by now? Hope Luke and your whole family are doing well.

Kate said...

Keeping you always in our prayers, my friend!
Kate