Thursday, October 11, 2012

Eddie's Angels



Almost a year ago, we started the whole process of figuring out why Eddie walked so high on his toes.  I was never really concerned until I took him for a physical and he couldn’t balance on the scale.  The nurse who I have known through 5 kids, told the doctor about it.  She had Eddie try to walk flat-footed and we actually laughed because he looked like Frankenstein, poor kid.  She suggested an X-ray to check for a tethered spine.  We went to Wolfson and thank God, the X-ray was normal.  Like an idiot, I googled toe walking and fear entered my heart.  I was honestly just looking for some exercises and saw how it can be a sign for autism to cerebral palsy and worse.

The next step was to take him to Nemours to see a Pediatric Orthopedic Doctor to check him out to see if we needed to go on to neurology.  He was really positive and didn’t think surgery would be needed or that we needed to do an MRI or anything extreme.  He suggested waiting a year and coming back.  As a parent, for some reason, you feel like a failure when something is wrong with your kids, like you made it happen somehow.  I was happy with his assessment but didn’t have peace about waiting a whole year. 

Mary Kay
Our church hosted a concert and my Mom and I went.  God ordained for me to see a very special friend of ours, Mary Kay, who I haven’t seen in many years.  We were visiting and catching up and I was telling her about all of Eddie’s issues.  Duhhh, I was reminded that she is a physical therapist with kids.  She said she wanted to come meet Eddie and check him out!  She came over and blew my mind.  She had him doing all kinds of crazy stuff, having fun but stretching his calves out at the same time.  It was an amazing thing to behold.  We really tried hard to figure out if my insurance would cover her as his therapist but just couldn’t make it work.  She would have totally done it for free but we just couldn’t ask her to take Eddie on too along with all her full load of kids.

My doctor gave us a referral for Brookes Rehab for therapy.  I was so overwhelmed and felt like crying on a regular basis when I thought about adding something else to my out of control schedule.  When you start a family, they are all so cute and cuddly.  Then they grow up and require so much of your time and money, driving them everywhere, homework and more.  It’s daunting on many days even though I am so thankful for each one of them. That’s why I depend on my relationship with the Lord so much!  If God didn’t help me everyday, I would surely die or at least run away!!  Being a parent is a regular reminder of your shortcomings.

Ms Jenn working hard with Ed
We went to Brookes Rehab for our first appointment and I was dreading every bit of the future process. Eddie is my most opinionated, stubborn kid and the thought of someone stretching his muscles and forcing him to do exercises made me cringe.  Ms. Jenn came out and greeted us and took us back to her room.  She was about as cute as a person could be, so full of personality but handled Ed like a serious pro.  She has seen him in all his stubborn glory and is so patient yet pretty tough too!  She gets him to do more stuff than I ever could.  It has been an amazing thing to watch!  I would seriously have to lie down and nap after every kid, if I did this all day!  It is truly a sovereign gift from God to have that level of energy paired with creative ideas to help them stretch and develop!  

I am forever grateful to God for helping me along this painful journey!  I have friends who have children with serious disabilities and one recently diagnosed with cancer.  I try to remind myself how blessed I am that this is Ed’s issue and it’s not something life threatening but it has been heartbreaking at times. 
Ms. Jenn checking out Ed's cool boots!
My friend Mary Kay mentioned getting leg braces for Ed to get the most results.  After a few sessions working with Jen, she thought braces were a good option with as tights as his legs were and that it would be the quickest, most effective way!  The thought of your baby in leg braces immediately makes you think of Forest Gump but I want this over with as quickly as possible before kids get cruel to Eddie.  With his personality, he is liable to punch them out if anyone did make fun of him though!

We went to Hangar Prosthetics and they did a cast for his braces.  My friend Mary Kay showed up for moral support and is so smart, and had some M&M’s in her pocket as bribery for Ed to be cooperative!!  Thank God!  He got to pick out the pattern and colors and picked Spiderman with red straps!  A guy named Ben was wonderful with Eddie and handled him well!  We went back in 3 weeks and at first he thought they were totally cool!  We told him they were spidey boots and would help him jump like Spiderman! That seemed to work for about 30 minutes.  I took him to the Dollar Store to get some prizes for being such a trooper and it almost killed me to see him walk in these braces.  I choked back tears, when strangers would look him up and down with pity!  I know all of this needs to be done but it has been tough on my momma’s heart that usually lets him get away with too much being my baby boy!  Talk about tough love.
Ed gets his braces
He sobbed uncontrollably and I cried too!  I had a meeting at school and my poor mom agreed to watch him but she is a worse softie than I am and could hardly stand to make him keep the braces on! She did what every good grandma would do, she made him his favorite food, cheese grits and spoon-fed him while he sat on the couch and watched cartoons!  All the kids and I came back to pick Ed up and I was never so proud of them.  They oooed and awwwed over his cool spidey boots and told him they wanted them and made the biggest deal!  He suddenly was very possessive of them and proud!! 

He wore them everyday a little bit more so we could make sure they fit properly!  It was time for him to wear them to school!  I told the teachers at school and they were so supportive and also made a big deal about how cool they were!!   His friends hovered around him and loved his spidey boots too!  The thought of him trying to play on the playground and run with the braces on devastated me.  Dan kept encouraging me that he would be fine!  One of my best friends texted me that she watched him out her window at school and he didn’t miss a beat!  I was so relieved and thankful!

Serious Progress!
We get to see Ms. Jenn twice a week and Eddie has had some very good days with good attitudes and some weepy, bad days when he earned no candy.  Seeing Ms. Jenn every week has been a tremendous blessing and I will never forget how hard she has worked on my son and all the love and kindness that she has extended to him! 

We had a bright spot yesterday, when we went to pick up his night braces.  George couldn’t believe how much Eddie had improved and really commended our effort!!  He said we were going to be a great success story! Yes, I choked back tears because I was so relieved!  This task and burden weighs very heavy on me!  I feel guilty for not looking into it years sooner when it started!  I didn’t not out of neglect but out of experience.  All my other kids toe walked and eventually came down on their own but Ed was getting consistently worse.

Ed gets his night braces
Today, I was grabbing some lunch for myself on the way to therapy and Ed asked for a smoothie.  I said yes and then Eddie said, “How about we take one to Ms, Jenn!”  I said that was a great idea!  Who knows if Ms. Jenn even likes smoothies but I knew that she would be thrilled about Eddie’s thoughtfulness!  He has grown to love her and even cried to go see her on one of his days off!  As much as I want him walking normal, I will be sad to end my visits with Jenn when the time comes!  I hope to always stay in touch!

On one of my overwhelmed days, I remember praying to the Lord about how afraid I was about raising all these kids and meeting all their needs!  I wrote down what I felt like God was saying to me. Part of it was that He would bring just the right people I need into our life that would have the knowledge and skill set that my kids need to grow into their divine destiny!  That happened supernaturally with Annie’s swimming and again with Eddie's Angels!  I dedicated all these babies to the Lord and He has assured me that He is well able to care for all of their needs and for me to relax and to trust Him!  That is my plan and I am ever grateful for all the people who will help Eddie walk on his heels to becoming a mighty man of God!!!

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