The Big Black Boot

About two weeks ago I had surgery on my right foot.  If we are friends on facebook, you are very aware of this and my obnoxious black boot selfies.  The recovery has been a little more difficult than I had expected.  I can't drive and I must put on the boot anytime my foot touches the floor.  It stinks and I really have grown to hate the big black boot.  It puts a really damper on my life and many things I need to do or would just like to do.  I have been shown so much love during this time with messages, food, PSLs (pumpkin spice lattes for those latte novices), and most importantly, chocolate.

After the pain meds wore off and the complaining and winging (learned that word in Australia...they love it) began, I heard a small, sweet voice...

"Momma, I need your help"

... and I would hear it again, whether real or imagined...

"Momma, can you get (insert anything) for me", "Momma, I need to go to the bathroom", "Momma, I want to help you.  Can you help me help you" (yes, she really says that or something close to that).

That small voice that wants so much to be independent but instead has to rely on a walker, wheelchair and too often the kindness of others.  AND with no complaining or whinging and often with a smile or something nice to say she gets through her day the best she can.

That sweet voice is a reminder that God intends for it not to be about us but about Him and others.  That I am able so that that I can help the disabled...I am blessed so that I can bless others.  I have been placed in a different pair of shoes with a new set of eyes.  Yes, it's temporary and I know the boot will go away and I will be self-sufficient again, but there are so many that need to be shown love and acceptance, kindness and patience.  So, I'm sure you will still hear me complain sometime about the big black boot and other things over the next few weeks but I am thankful for the big black boot and what it has taught me.  I am humbled.  Thank you God for the reminder.

I think sometimes, in our irreverence, God has to thump us on the head (my dad used to do that when we acted up in church) or kick us in the bottom with a big black boot.  Go be kind to someone today.

Philippians 2:1-4 
If therefore there is any encouragement in Christ, if there is any consolation of love, if there is any fellowship of the Spirit, if any affection and compassion, make my joy complete by being of the same mind, maintaining the same love, united in spirit, intent on one purpose. Do nothing from selfishness or empty conceit, but with humility of mind let each of you regard one another as more important than himself; do not merely look out for your own personal interests, but also for the interests of others. 

The Big Black Boot

The Good Mommy

Overhead last night at our house...

"Hello, yes, I'm calling about my daughter.  I would like her to not use her walker and wheelchair as much as she has been.  She is doing really well with her walking and I'm so proud of her."

Pause

"Yes she can use her pink canes but her walking is getting so much better and I would like her to walk on her own as much as possible."

Pause

The talking begins again but I'm lost in the first part of the conversation.

You are probably thinking that is me on the phone.  That is my part of a telephone conversation being overheard.  

It's not me.  It's Grace.  She is on "the phone" and in her lap sits one of her daughters.  The one that is the most like her.  The one she takes everywhere.  The one she talks about the most.  The one who has had surgery and therapy.  The one that is sometimes disobedient and gives her brothers and sisters a hard time (Grace has 6 kids). The one that needs her the most. The one that has a really good mommy.

Grace and Cinderella cuddling after a long day.

Just a Little Shopping

I hate shopping.  Oh I like new things, but I hate picking them out.  I'm so indecisive.  And when I do make a decision, I worry that I spent too much or that it's the wrong choice.  Trying to putting together clothes for our upcoming family photos has given me many sleepless nights and possibly a few ulcers.  I have purchased and returned so many pairs of shoes that Zappo's most likely has my photo and credit card number posted in their warehouse under the caption "BEWARE, this lady will order six pair of shoes and return five, and three dresses and return two, over and over and over!!"  In my defense, I have kept four of the last ten pairs I have ordered.  Oh  it's bad...and I've just been talking about shopping for my kids' clothes...shopping for myself is whole different kind of madness.  Big items?  Shopping for those sends me into a comatose state for a few days.  

My shopping wish list for the near future includes...

Kitchen Tile

Patio Furniture

A new chair for the living room, decorate master bedroom, etc.

But those things are wants and I will be focusing more on the needs for now (at least I consider them needs for special needs).  Many of these things I've refused to even think about, but now we must...it's time, there's a need...and none are inexpensive.  I'll be shopping for...

Renovation to Kids' Bathroom for Accessibility

The only thing we've managed to do on this is install a bar by the toilet for Grace to hold onto and purchase a bath bench which we haven't started using.  Grace is only getting heavier and my back is only getting older.  I'm not even sure the kids' bathroom is going to be wide enough for all we need.

Lap-top Computer and Dictation Software

As Grace's arms and hands are affected by cerebral palsy, her writing is very slow and at times not very legible.  She types some on our desk top but we now need to consider a lap-top she can take to school with a dictation software that she can use for longer writing assignments.  

Power Wheelchair

Grace is doing really well with her walker but it does limit in some in staying up with her classmates.  She has a manual wheelchair but can't move it very effectively either.  Although I prefer her to use her walker as much as possible, it is very important that she doesn't miss out on school activities because she can't get there in time.  Although we are about two years away from insurance paying for another wheelchair (they will only do it about every five years), it is probably time to start deciding what we want and getting the process started.  

Accessible Van

With the need for a power wheelchair (and sometimes with even a manual one), comes the need for a van to carry it in.  OUCH they are expensive.  

And so the research begins for these things.  I'm overwhelmed but ready to focus.  If you have any insights on any of these things (including grants or funding) please let me know.  I'm pretty I'm not going to be to purchase ten of each to try out.  

Amazing and Wonderful and Full of Surprises

Life is amazing and wonderful and God puts amazing and wonderful people in our lives to help us remember that.  Yesterday afternoon I spent some time and some coffee with a man and his wife.  This man is 71 years old and has cerebral palsy.  He also has a masters degree in computer science, went to Oklahoma State University (my family will be excited about that) and Purdue University, has two children, worked for TI for almost 30 years and best of all, loves God and wants to share his story with anyone that wants to listen.

We spent about an hour together.  He told me about his life and teared up a few times when talking about his mother and how she never gave up on him and never let anyone tell him he couldn't do something.  I love the story about his mother calling the school and insisting he be permitted to take drivers' education when they said he would not be able to drive.  He was allowed to take the class and got his driver's license!  And there was the story of the high school counselor that said he shouldn't go to college because he wouldn't be able to do it and how he now wishes he had gone back to this counselor and showed her his college degrees.  I love his advice on assessing Grace's talents and optimizing them.  I covet his advice on NEVER letting anyone limit her abilities.

I was introduced to this man by a friend that heard his testimony at her church.  What I didn't know is that I had actually seen this man before in 2011 here!!!  Thank you my friend for bringing this man back into my life and thank you God that life is so amazing and wonderful and full of surprises.

Next time I get to talk with my new friend, I will take a photo of us to share and I hope that he and Grace get to met very soon.

Surprise us with love at daybreak; then we'll skip and dance all the day long. Psalm 91:14

Where is the Patience? Where is the Love?

My patience is thin.  My back and shoulders hurt.  I feel guilty that I can't spend more time with my other children.  Did I say that I have no patience?  Why can't Grace do more?  Why isn't she making more progress?  Is all this therapy worth it?  Does God hear my prayers?

WOW...yes I put it out there...where is the love...the unconditional love?

Have you heard of Wright's Law?  I keep this video on hand when I need reminder of "why", "what it's all about" and "where is the love".  It is about 11 minutes long but I PROMISE it is SO worth it.

Love you!!!

And now these three remain: faith, hope and love. But the greatest of these is love. 1 Corinthians 13:13

There is no fear in love. But perfect love drives out fear, because fear has to do with punishment. The one who fears is not made perfect in love.  We love because he first loved us. 1 John 4:18-19

Stop Complaining and Just Keep Trying

Grace begins an intensive therapy session next week.  It's 3 hours a day, every day for 3 weeks.  It is one of the best things she does to get stronger.

However, it's not always easy on our family.  We drive back and forth to Dallas every day.  I have to juggle our schedule...make provisions for Mack and Sophia.  Grace is tired and grumpy.  I am tired and grumpy.

I have been complaining a lot lately, thinking about how tired and stressed I will be over the next 3 weeks...how thin my patience becomes.

This morning the following video popped up on facebook from Grace's physical therapist.  I am ashamed.  I am thankful.  So...I'm going to stop complaining and just keep trying...because I know that is what Grace is going to do.

Just Another Dream

I'm a dreamer.  Literally.  I dream very vividly.  Sometimes there are nightmares but most often just puzzling events that stay with me much of the day.  I had such a dream last night.

In this dream I was back in my twenties, unmarried and no kids, but there was Grace.  Everywhere I went I was trying to bring her along...make her comfortable in whatever situation we were in.  How was she there?  Will she always be there?  What does this mean?

Recently I was having dinner with a friend and our conversation turned to marriage and the impact of kids on a marriage, the impact of an empty nest on a marriage.  My friend suggested that I may never truly have an empty nest...Grace may always be living with us.

Now while I'll admit that has crossed my mind, I have always imagined that Grace will go to college, live on her own, get married and have her own kids one day.  We (Grace and I) even talk about that for her future.  I know none of this will be easy and I think of all that would have to happen for her to "go away" to college but I think of it as a possibility...a probability.

I may be in denial, because I can go there, but I am hopeful.  I have dreams.

For God gave us a spirit not of fear but of power and love and self-control.  II Timothy 1:7

Seven

Seven.  I've always liked the number 7.  What's not to like?  You have...Seven Wonders of the World, Seven Brides for Seven Brothers, The Seventh Day of Creation, Seven Jeans, Seven Layer Dip, and my birthday's on the 7th.  Seven was the magic number. (I guess there are the 7 deadly sins but that's another post.)

I've always had in my mind that seven would be THE age.  During her seventh year Grace would walk.  Oh I wasn't expecting full-on wind sprints, but I was convinced she would be able to walk only with a little help from her canes.  We had done everything right.  Therapies, conductive education, surgeries, botox, e-stim, gyrostim and more therapies (we even did craniosacral...not a fan) and I can probably tell you about every neuro-specialist in the DFW area.   You name it, we have done it or at least researched it extensively.  We didn't have anything in writing from "an expert", but it had been hinted that seven might be the time and I took that suggestion and held on tightly.

Well Grace is seven, actually almost seven 3/4.  She will be eight in August.  Seven has been good in so many ways...a great year a school, new friends, song leader at church, and much more.  But I have to admit I've had a bit of wind taken out of my sail and I've had to be more realistic about things.  I've had to come to terms that there was never really a magic number and that walking may never really happen.  However, I will never stop hoping... and praying...maybe the number is 8.

Be strong and take heart, all you who Hope in the Lord.  Psalm 31:24

And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.  Romans 5:5 

Remember to Be Thankful

I have had a very strong desire to try to start blogging again.  My apprehension was lying in the part of me that just wanted to complain, vent, lament.  I don't want my blog to be just about that...although at times it is quite cathartic.

I have had several email messages lately from people who have found my blog and my old (very old) entries regarding PERCS, SDR, therapies, and just lamenting.  Some want specifics on procedures and outcomes, and others just have had a CP diagnosis for their child and just need to reach out to someone that understands.  Because you see, while there are so many that don't understand, there are some of us that do.  Sometimes it just takes a little vulnerability and nothing has made me more vulnerable than the past 7 years.

So, as I attempt to come back to blogging, I want to focus on gratitude.  My focus this morning was changed from lamentations to thankfulness.  Thank you God for putting the sermon Ross spoke out before me when I really needed it..."a focus on thanksgiving pushes out complaining...brings us a steadfastness of hope...a perseverance no matter what".  My perseverance was faltering at best.  I had lost hope and focus and needed a re-start.

So today I am thankful, and I have so much to be thankful for.

Shout joyfully to the LORD, all the earth. Serve the LORD with gladness; Come before Him with joyful singing. Know that the LORD Himself is God; It is He who has made us, and not we ourselves; We are His people and the sheep of His pasture. Enter His gates with thanksgiving, And His courts with praise. Give thanks to Him; bless His name. For the LORD is good; His lovingkindness is everlasting, And His faithfulness to all generations.
Psalm 100