We have had quite a week since I last blogged. Ever since my brain injuries last summer, I don’t ever remember a more OVERWHELMING time. I am strong, and I know God has lessons that will shine brightly after this time is over. Watching your child go through hard times takes the cake for difficult times, but he shows me what strength and perseverance mean.
I guess I always have an underlying fear that he is going to blame me for passing down this gene to him for Charcot-Marie-Tooth. I’m always thinking that when things get rough he will not like the hand he was given. That’s just the mother in me worrying about things I can’t control. Well, this week he was scheduled to get his second major surgery in a month, and for the second time it was canceled due to an infection. For the second time I have had to tell him that the surgery is postponed when medicine wears off. The first time he handed it ok, but this time not so much! He cried and made my heart hurt because his was. But we got home and my sweet boy just busts out and says as if he can see in my heart, “Mom, if I was given the chance to make this disability go away I wouldn’t! I think God gave us this to testify and help others with sharing what we’ve learned.” WOW is all I could think! Thank you God for showing your blessings!
Well I have not posted in a while as even though I was on “summer break ” there have been many circumstances going on that I have needed to devote my uninterrupted time to! My son has had phase one of his orthopedic surgery and we are doing phase 2 this Thursday! As I have spoken about in earlier blogs my son has the same neuromuscular disease, Charcot-Marie-Tooth as me! We don’t focus on having a disability in this house! Yes we talk about it, but it’s not the focus of our days! Nothing has ever been more difficult than watching Will go through these surgeries! I worry, I just wish I could keep pain away from him! However, I trust that God has this! I look at Will and he is handling all of this so positive! My family just got back from a quick vacation and it made my heart to see him smile, play and get to be a kid before we start phase 2! I always said if when I have a child if he/ she has my disability, who better to raise him but me because Ive been there!!! I think about that often as even though it is hard to watch your child go through major stuff, God knows his plan and we’ve got this…..together!!!
1 year ago today I returned from Siskin Rehabilitation Hospital thankful for life but not having a clue what came next!!! Would I be able to do ANYTHING by myself again, be the mom and wife I was, have any independence, would I drive again, and would I work again? God is AMAZING and has allowed me to be the mom and wife I yearned for so bad, I worked all year with help from dear friends, I just got my drivers license back ( am waiting on my van to be modified), have grown hugely in my faith, have friends from the past to newer that have stuck with me every step of the way,and have partially regained physical independence! I still have reduced use of my right side, but it has slowly improved some! Half of my body is good but my whole heart is GREAT!!!
Look who got her drivers license after passing the road test in my driving trainer’s modified handicapped van….ME!!!! It has been a year and 3 months since my first brain surgery and left me unable to drive! I have learned everything over again and the lose of independence has been the hardest thing to handle!! I have never wanted something so badly and worked so hard…and lots and lots of learning to wait on God’s timing and prayer! One of the biggest hurdles has been overcome!!!!!
Independence is a HUGE word! What does it mean to you??? It may be a girls night out, it may mean going on a trip…for me it is a simple act that I used to take for granted DRIVING!!! What I wouldn’t do to drive to work independently, taking my son to school, appointments or just for fun, to go to the grocery store for my family..INDEPENDENTLY! Since my first brain surgery April 2017 I lost my independence!! I have struggled the most with losing the ability to drive as I am a goer and doer! I have been blessed to have friends to drive me to work, had family change their schedules to take me to therapy, my husband running around like crazy and the whole time me feeling more and more guilty for having to ASK for help which has always been hard for me! I have luckily been blessed with family and friends that have stuck by and helped me stay in work, etc. Well the time is here… I have been in driving training for driving modifications and I test on Friday June 29th to see if I can get my license reinstated!!!! I am sooo nervous but very optimistic! I am that close to independence!!! Please pray, cross fingers, toes and anything else that I pass and get this part of life back!!!! Just a coincidence is that my dad passed on that date 23 years ago…WOW!!! With that said I know I will have a special angel watching over me!!!!
Will has had a GREAT recovery so far!!! He had the cord length strengthening and tendon transfer on Wednesday! He was nervous, of course, before surgery and I loved on him and told him “You can do this! This is a chapter in your book of life sweet boy!” He took me literally and started writing!
Now to wishing my husband a Happy Fathers Day!! This one has been with mixed emotions as 4 months ago him oldest son committed suicide at 28 years of age, daddy of a 3 month old, in a very committed relationship to a young lady he was engaged to, and struggling with PTSD since serving in Afghanistan in the army! We need to help our veterans so much more than we do! Suicide is viewed negatively but there are people that have sicknesses that lead to this! Ian you are missed and thought of daily! Will we love you every second of everyday!!
As a parent we never want to see our child go through difficult times!!! Nothing breaks our heart more than to see pain in your child’s eyes! As previous posts have explained Will inherited my neuromuscular condition Charcot-Marie-Tooth! On Wednesday he will have a major surgery on his right foot! He will have a bone moved to straighten his alignment and screwed in, a tendon transfer to help lift his foot, and heel chord lengthening! He will be non weight bearing for six weeks! As much as my heart aches this is why God blessed me with this child! I can and will guide him through this process spiritually, mentally, physically (you can do anything for your kid) and A LOT of love, praying, and time devoted to his healing! He says he is ready!! Prayers appreciated for just that!!!