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

The Others

This morning as Grace and I waited outside the school entrance for her aide to walk her into the classroom, we chatted as usual.  The conversation was typical until it took a turn that I wasn't ready for...

Grace: "Mom, you know there are other people that have cerebral palsy."

Me: "Grace, what did you say?" (I was pretty sure I hadn't heard correctly)

Grace:  "Mom, there are other people that have cerebral palsy."

Me: "Yes, you are correct.  There are many others that have cerebral palsy."

Grace:  "Just like I have cerebral palsy."

Me:  "Yes, there are others like you that have cerebral palsy."

As you can see, I wasn't sure where to go with this conversation.  I was starting to panic.  Grace and I had talked about her condition but mainly in the context of therapies, surgeries, etc.  I was going to let her lead me to THAT conversation.  The WHAT IS GOING TO HAPPEN TO ME...the WHY ME...THAT conversation.  I was waiting until she was ready...and maybe until I was ready.

We were interrupted by Grace's aide opening the door so we weren't able to continue.

Where was Grace going with this conversation?  Had someone been talking with her about this?  What should I say?

Grace's aide says they have not talked about this (although I wouldn't mind if they had) and she hasn't heard anyone else having this type of discussion with Grace.

Then it hit me.  We had a visit yesterday to the Scottish Rite Mobility Clinic.  She saw doctors, nurses, therapists...also other children with cerebral palsy.  Did she not know?  Did she think she was the only one?  There are others.  We are not alone.

What Might Have Been

There is a song by Little Texas from the 90's that keeps popping in my head lately.  The title of the song is What Might Have Been.  If you listen closely to the words, they don't really apply to my situation but I often think of what might have been.

When Abe and I were thinking of starting a family we discussed the possibility of having a child with special needs and what that would look like.  We only had the conversation once because, well, it would never really happen.  And of course, we said and we meant, we would that child endlessly no matter what.

So why the questioning lately?  I really try not to go there.  It is not constructive and as the saying goes, "comparison is the thief or joy", and so are regrets.  But I have to admit I have been thinking...what if Grace could walk?  What if we didn't have to spend so much time and money on therapies and equipment?  What if our lives were typical?

I know these feelings will pass and that I will be able to focus more on the gifts and joy that Grace brings to our lives but for now...today...what might have been?

Be joyful in hope, patient in affliction, and faithful in prayer.  Romans 12:12

The picture above is Grace at intensive therapy with her wonderful therapist Lissa, one of the joys in our lives.

FutureLand

I saw Grace last week at DisneyWorld.  Of course you did, you are thinking, she was with you the whole time.  This was Grace in the future.  Ironically enough, she was in FutureLand standing right in front of us to ride Space Mountain.  We were in the Fast Pass or "those with special needs" line.  She was in her early twenties and had long curly blond hair.  She was in a wheelchair much like Graces, only bigger.  Next to her was a young man in his twenties also.  As the Space Mountain car came to a stop for us to board, the man gently picked up the woman and placed her in the seat.  She was all smiles...just like my Grace.  I got to see her one more time as she disembarked from the car, with the man's assistance.  She was laughing and he said "See I told you it would be fun!"  I was mesmerized.  I wanted to ask her name, her diagnose, her life.  There she was...it was Grace in her early twenties....and she was happy.

There's Freedom in Release

I recently notice a friend's facebook status update "There's freedom in release...".  This friend has a child with special needs and although she didn't specify the situation my mind could only imagine the different possible things that she may have had to let go...dreams, expectations, a fight for inclusion, or maybe it was not even related to her child but something personal.  Whatever the situation, her update made me think specifically of the dreams and desires for my child I've had to release.  I have to let them go (kicking and screaming) and start revealing in the possibilities.  

Grace has been taking piano lessons since last October.  Because of the affects of cerebral palsy in her upper body, her arms, hands, and fingers are affected.  Not severely, but her movement is limited.  I had been searching for something that she could get involved in...something that was not therapy related.  We have a piano (I play), she loves music...then piano it is.  I had this vision of her walking up to the piano and changing people perceptions they had formed of her because she has CP as she begins to play beautiful music.  (Honestly I don't know if this would be her dream) She has enjoyed her classes which have mainly been learning music theory. She has yet to play anything recognizable or even play using her entire hand.  We had taken the summer off from piano lessons and I had decided to start up again.  This time she and Sophia would be taking from the same teacher, back to back lessons.

As I sat through her lesson this week, as hard as I fought it, I realized that this was not the time, and it may never be the time for her to take piano lessons.  It's just to hard right now.  She can tell you the beats to each note and tell you what a treble clef looks like, but she can't make her hands move along the keyboard.  It has also become more difficult as I watch Sophia excel and Grace barely able to peck out middle C.  So as I drove home from piano lessons, near tears, I let it go...we would take Grace out of piano lessons.  Now this doesn't mean she can't try again later but for now this is not her best use of time or our best use of resources for her.

I've struggled with the decision but it's finally made and there's freedom in release.  I'm letting go of this dream...for now.

Hi, Do you have CP? Can we talk about it?

Through our various therapies, support groups, etc, we know several children with varying degrees of cerebral palsy.  All an inspiration.  However, we don't know, personally know, any adults with cerebral palsy.  I often think about how Grace will be when she grows up and how I have no real personal idea...no one I can call and ask "so what is it like to be an adult with CP?".

About a month ago, me and the kids were at the library, Grace walking with her walker.  As we were leaving a man walks up to us.  From the his unusual gait, I assumed he had cerebral palsy.

Man:  Hi!  "Does she have cerebral palsy?" (Points at Grace)
Me: "Yes, she does."  (Trying to guide her out the door and up the ramp)
Man:  "She looks great!  Don't let anyone ever tell you she can't do anything."  (his speech affected by CP)
Me:  "Thanks so much!  We won't." (a little distracted by Sophia questioning his unusual speech...that is a discussion for later)

He then walks to his car parked next to ours in handicapped parking, gets in, and drives off.  I was so touched that he would stop and talk with us.  It felt kind of like I had gotten a pat on the back and an "everything will be okay".

If I didn't have my three with me (and again Sophia questions), I probably would have ran after him and asked if I could buy him a coffee and pick his brain.  Hopefully next time I will be better prepared.

Yesterday while at the grocery store, looking for an open register, a woman waved me over saying "Ma'am, I can get you right here."  She then turned to walk to the register.  There it was...the unusual gait!  Did she have cerebral palsy?  Can I ask her about?  Will she be offended?  I stood there very conflicted about what to do as she ran my grocery items across the scanner.  I didn't ask.  I was too afraid.  Of what...what would she say...would she want to talk with me about it?  Will Grace get those questions...or just looks of sympathy or even disgust at times.

Maybe I'll get another chance.  What should I do?  What would you do?

Talkin' about Walkin'

Since we have been home from St. Louis, I have had so many questions from friends and family about Grace's mood, behavior, feelings, etc since the surgery.  "What does she think about the surgery?"  "Does she say her body feels different to her?"  "Is she upset that she can't get around as well as she could before the surgery?" "How does she feel about what is happening?" etc, etc.

And the answers are...I don't know.  She doesn't talk about any of this...at least with me.  I have explained to her, both before and after the surgery, what was going to happen and why we were doing this.  I have asked her many times about how she feels about having the surgery...does her body feel different, does she understand why she had the surgery, does she have any questionas, and on and on.  No response, or at least no direct response to my questions.  I'm not sure how to feels about what she has gone through because she has a great attitude, like she always did before, and works really hard during her physical therapy (as long as it is not me trying to get her to do it) and generally seems like her old self...just physically weaker.  And physically she is doing much better than we had thought at only 1 1/2 weeks out of surgery.

I would be interested to know what types of interactions other moms of children with special needs have when there is some kind of physical change like we had.  What am I supposed to think?  She is not talking about walking.

Regrets??

This morning, our first morning back from Grace's rhizotomy in St Louis, I immediately starting Grace's stretching and strengthening routine and I was immediately frustrated...she is so weak.  Of course she is, you are probably thinking, she just had a major surgery!!  Now, it's not that I'm typically an instant gratification kind of girl but when will the "miracles" we were promised begin (again no patience).  Part of the problem is the "no regrets" policy I have tried to follow during this journey with three very premature babies.

Once the decision was made to continue with the surgery, I was 100% (okay really 99%) sure the SDR was the right thing to do, but there is always that .01% or 1% doubt factor...isn't there.  My doubts were increased a small percentage about a month ago when we went for a routine check-up with our neurologist in Dallas.  I had not told him we were considering the SDR until that visit.  He is not a big fan of the selective dorsal rhizotomy.  I don't believe he has seen that many patients who have had SDR (both before and after) but he didn't think that removing the spasticity would help Grace walk..."most CP kids need the spasticity to walk" was his response.  I explained to him that we had been considering this procedure for about 3 years, had done our research, and had talked to several parents of children who had the rhizotomy. None of these parents have had any regrets.  Dr. X then responded (and I paraphrase) "You will never hear a parent say they regret making such a big decision for their child.  They don't ever want to feel they have done the wrong thing for them."  I was speechless...but REALLY?!  Do we become so brainwashed or narcissistic to think that every decision we make for our child is the right one?  Do we really never make any mistakes with respects to our children?

Have we made a mistake?  I don't think so at this point and can't really know until we are at least six months out.  So, when you ask me at that point what will I say and will you believe me?