Friday, September 11, 2009

Drained...

This week was one difficult seven days. I'm not sure what made it different from every other week but tonight I'm feeling very drained. There were so many events this week which I was brutally reminded that my little boy is sick -- not that I don't know that already, but sometimes our life that I call our normal is flashed back in my face with a huge abnormal sign. Sometimes it just hurts.

This week Gavin was supposed to start a new class at the YMCA. In the back of my mind I pretty much realized that this was not going to work out so well. My fingers were crossed that Gavin would actually be awake long enough to find some enjoyment out the play time. We arrived at the class called "play ball" -- Gavin was wide awake. To my surprise even though the class is entitled "play ball," there is actually no ball playing involved. The entire class is a play time on the gymnastic equipment -- which my little boy cannot do. He can play ball -- and that's what I assumed he would do.

I left the class defeated. Gavin really could have cared less, in fact I think he fell asleep soon after. Me however -- I was almost brought to tears. I think it was the fact that I could not make this happen for Gavin. Adam and I put so much energy into making Gavin's world accessible for him. When I came to the realization that this was not a class my child could participate in because of his disability -- it hurt. I hurt for him.

That same day we spent an hour or so at the indoor pool. Madison was swimming in the deep end and I was sitting on the edge and Gavin was sleeping parked behind us. The aquatics director can over and nicely told me that Gavin's wheelchair is blocking the lifeguards view and that next time I would need to take Madison over to the shallow end to swim, so Gavin would be out of the way. Again I was almost brought to tears -- over the simplest thing. Because in a perfect world I would be playing in the pool with both my children. Sometimes it just hurts.

It is so difficult watching Gavin slip away. We don't know what his future holds. We could have many years ahead but we could also only have a few more days. It sucks to live that way. It's draining to try to fit a life time of experiences into a few short years. It is so draining sitting for six or so hours watching blood drip into your child's body, knowing that we will just have to do it again next week. It sucks.

I know the drained feeling will subside, but I often wonder how Adam and I can possible do this for much longer. We will. We want to. We will do anything for our family. I'm not looking for advice or pity just an open ear.

Mito Sucks.

40 comments:

Amy said...

Hello,
Just wanted to let you know that I am here to listen. I have 2 daughters, both with special needs. One is on the physical side (Tetrology Of Fallot) and the other one is on the developmental side (Autism Spectrum). From the Christian perspective I have peace, but I am still their mommy and it hurts on so many levels. I have followed this blog for awhile and I think your family is amazing. Thanks for sharing your story. We are keeping you guys in our prayers!

Amy

Anonymous said...

AS always Karen you and your family are in our constant prayers and thoughts. We love you. Aunt Carol and Uncle Mitch.

carrie-anne said...

karen...you are amazing!!! even though you are drained you still inspire. thank you for your honesty. not a day goes by that we as a family aren't praying for you. much love always!

Kirsten Yarnall said...

Amen,amen,amen. Let it out girl. You have every right. We love you and continue our prayers.

Reagan Leigh said...

I'm so sorry Karen! I know how you feel but at the same time I can't even begin to know how you feel. All of our situations are so different, but there are so many similarities as well. It's just so hard. Some days are definitely harder than others (I just want to slap that guy for telling you to move Gavin's wheelchair!) But I can't even begin to tell you what a wonderful job you do day in and day out for your kiddos (and I know I don't even know the half of it). You are an amazing family and you are never far from my thoughts and always in my prayers!

Betsy said...

I agree that mito sucks! I am so sorry for what you are going through and I am praying for all of you.

Posybunny said...

Praying for your family...

Stephanie from Portland said...

It does suck. I hate that you, Adam, Maddie, and Gavin have to endure this. We are all praying for you guys and you feel free to vent anytime. We will all listen.

Cammie Heflin said...

Sending prayers, Cammie

Christina said...

I totally get it. The unconditional love we feel for our "special children" is amazing & beautiful. But there is always something in real life that jumps out to remind us that we aren't "so normal."

Example: My daughter starting special education preschool.

I pray for God to give others the strength to see He does.

beauty obscure said...

Wow, that aquatics director makes me mad. There has got to be a way of accommodating for Gavin's wheelchair to be near the deep end and not in the lifeguards way. I'm sorry to hear the class didn't work out well. Maybe an indoor soccer program? At his age they don't really "play" soccer so as long as they would allow him to hold the ball instead of kicking he could participate.

(Hi I'm Megan... advocate/support worker for kids with s/n just following along with your story and sending good thoughts your way... your kids are adorable)

Rob, Tina and the boys said...

Echoing what everyone else has said. Blogs are therapeutic, and sometimes you just need to vent. We're all here for you. I feel like I know you personally and honestly talk about you all the time. Not that you are the mom of a "special" boy, which of course you are, but you are by far the strongest woman I have ever "met". I pray for your family everyday.

tripntwinmom said...

I too have 2 special needs children and my heart goes out to you. I ams ending prayers up for you as always all the way from Texas.

JennP

Momma of 5

Heather said...

Our ears are always listening and our eyes are always open and what we see is a family doing everything and anything for the love and life of one small boy.What we hear is a mom and a dad who are tired and frustrated and want their child and family to be cut a break.All of which,I totally get.Sending you prayers as always and strength for these moments.

Anonymous said...

Karen,

Here "listening" to your heart and knowing just exactly how much it hurts makes me hurt for you and your family even more. Not sympathy, just complete understanding of how much you want Gavin to experience life, desire for any type of normalcy for your daughter, and for the world to be opened up to him despite his chair. I am there with you. Just wanted you to know that you guys are loved and thought of and even understood. Your an amazing mom and I'm so blessed to have the opportunity to come here and "listen" to your heart. Sincerely, Trish Adams

S said...

Mito does indeed suck. I'm so sorry you had a rough week.

Renee Little said...

I feel like I know you...and I don't. I know that my heart is full of love for your family...and my prayers are full of requests for rest, peace, healing and joy...

Thanks for sharing your story...your life. God is using you in a BIG way.

Neighbor Wars said...

Thanks for sharing. Us blog readers will always be here to lend an ear. Mito certainly does stink!!! The director at the pool made me mad too. But I give you such credit for trying to get Gavin out there and do things in a world that doesn't often enough accomodate wheelchairs and handicaps. Praying for you, Gavin and your family!

Ellen

grey like snuffie said...

It does indeed SUCK...I listened..still praying for what He alone can do

stephanie said...

"In bringing many sons to glory, it was fitting that God, for whom and through whom everything exists, should make the author of their salvation perfect through suffering. Both the one who makes men holy and those who are made holy are of the same family. So Jesus is not ashamed to call them brothers." Hebrews 2:10,11
I have no words but, Jesus knows, sweet Gavin, Jesus loves you!

Anonymous said...

I know no one as strong, beautiful, and devoted as you..I am so proud to call you my sister and I want you to know that i'm pouring out so much love to you..your posting made me cry...I love you..you are stronger than you even know right now..Everyone has your back!!! Keep pushing and Im so glad you got it out!! Necause it does really SUCK!
Luv you...
Your sis

Kait said...

You have two open ears and a ton of prayers coming your way.

Anonymous said...

I read your post out loud to my son, 14, and he said, Wow, I just want to give those people a hug right now".
I do too. We pray for your family often. Hope you are feeling better..

Becky said...

praying for you guys! Hang in there!

ISO (In search of) said...

I've been praying that Gavin's body stays strong. I will add the prayer that God opens up opportunities that make you feel successful in giving Gavin his world. I hope you know that the love you and your whole family pour out on him are more than enough for him. Some kids never get that far even. Keep on wanting the best for him and challenging the system to get it for him. He has every right to feel like this world belongs to him too.

Stay strong...

Cindy Heintz said...

Don't ever be afraid to talk and express your feelings...
That's why we're here! I feel your pain and sadness :(
Keeping you in my thoughts and Prayers ALWAYS!
Much Love to All of you.
God bless

Anonymous said...

I am a mother of 3 children and my daughter Katie loves to sing. When she was a little girl maybe 6 yrs old she wanted to sing in our church choir. I was so excited because my two boys did not want any part of singing at church. So we went to the first meeting and I stayed in the room like all the other parents =)

Then the choir director of the children came up to me and said I would need to leave the choir room! You see I am in a wheel chair and there was a little girl who had autism and she was afraid of wheel chairs or crutches etc..

I felt so bad because I knew if I left the room my little girl who also wanted to sing in the choir would be afraid and not stay all by her self =( So I tried to talk to little Katie and explain that I had to move out into the hallway and that I could still hear her sing but that another little girl was afraid of my wheelchair. It hurt me so bad inside that I just wanted to cry but at the same time I tried to understand that this other little girl with Autism needed to use this choir and singing as part of her therapy because there were so many other things that she could not do.

So we left the choir room that day and my daughter never did sing in the church choir but...she is now 16yrs old and she still loves to sing and she joined the choir in highschool and now I get to sit in the front row and listen to my beautiful daughters voice =)

I hope that other little girl with Autism knows the big sacrifice we made that day so she could remain singing in the church choir and not be afraid of my wheel chair.

I know in my heart I made the right choice but it really hurt my heart inside to know that just because I was in a wheel chair that my daughters dream was shattered that day at church.

Anonymous said...

My grandson Isaac also has a disability. Not at all as serious as Gavin's, but he too may never play soccer. Every night he prays for his legs that God will make them work and for Gavin and his mom, dad and sister that God will make them strong. You have our thoughts and prayers every day. God bless you.
Paula Tarquini

Joy0706 said...

God bless your beautiful boy and your family.

The Rowe Family said...

I come and I read and sometimes I don't leave a comment, because words just don't seem to suffice. I look at Little Gavin's pictures and my heart is heavy. I have a beautiful healthy little boy and trying to wrap my mind around this is impossible. I just wanted you to know that I am here, that I do listen, that I do pray and think of your family often ~ despite the fact that words do seem to fail me. God bless Karen! You're an amazing Mommy! Emily

Anonymous said...

I've come to love your family via internet. My gosh has it almost been 2 years? I bought a shirt and will proudly wear it!!!
Katrina

Anonymous said...

we love you all Karen and we are praying for strength to get you through another rough patch. the Derrick Family
P.S. that woman from the gym is a bully i have had run ins with her before when doing physical therapy with another child. She has no clue. Amanda

therextras said...

Gavin and you and your family inspire me. I pray for him daily and am thankful that you share him online.

I read your comment that he will be getting a power chair soon. I hope that the power chair will come to symbolize some renewed strength (power) for each of you. Barbara

Anonymous said...

I'm so sorry that the barriers keep on coming at you. I hate that you can't be the mom you want to be to both kids at the same time in such a simple scenario as being at the pool... Haven't commented in a while but keep up with your blog regularly. The Owen family has never been left out of my prayers...

Nilia

Lisa Marie said...

Hey guys... just wanted to say we are so sorry that you have to live this way, every day. I cannot imagine how difficult this is, for all of you. You are an amazing mom and a constant inspiration. You are in our thoughts and prayers. We love you! - The Walks

Heather Nicole said...

I'm so sorry Karen, Mito does suck.
I love you.

Heather

Rachael said...

Hey. Just... {{hugs}}

Anonymous said...

8 The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8

You guys just hang in there and remember God is with you all the way. He Loves your family!!!

amy said...

Still thinking about and praying for your family daily.

Erin said...

Friend of a friend referred me to your blog. I am a blogger too & have lost 2 children (in the past 3 years) to terminal illness...I can physically feel that exhaustion you wrote about now as I take myself back to those days...fighting to be as full of life as possible while dreading the future. It is exhausting & you will do it & you will be so glad that you did. Love that little bug! Hugs from Erin, Jeff & Calvin