I had everything planned because that's what an A type personality does...and then I got the flu and that put me down for over a week. I tried Tamiflu and found that I could not tolerate that medication so I used everything in my natural arsenol to fight the flu. I began to feel better and I got a sinus infection. I often think this is God's way of letting me know that I'm not in control and as much as I like to think I am...I'm not...and He is. This week in between trying to get my strength back I am cleaning, packing, and planning...but most of all I am praying and I am taking time to hug, kiss and enjoy Sam. I think sometimes God just knocks you on your ass to get you to refocus on the important things like less planning and more living, less thinking and becoming more anxious and more sleeping, less doubting and worrying and more believing and hoping.
All the preparation in the world will not get me ready for that moment when they wheel Sam away and I have to put all my faith and trust into God, Dr. Standard and his medical staff. Surgery is never easy and surgery for Sam is especially difficult due to his pulmonary and immune system issues. I keep telling myself...he's stronger than he was before, his lungs and breathing are at an all time high right now, he's healthy and God will get us through this...and yet at any moment I feel weak and vulnerable.
Today a friend sent me a passage that I printed and put into my Bible to reassure me on this journey.
Do not look forward in fear to the changes in life;
rather, look to them with full hope that as they arise,
God, whose very own you are,
will lead you safely through all things;
and when you cannot stand it,
God will carry you in His arms.
Do not fear what may happen tomorrow;
the same understanding Father who cares for you today
will take care of you then and every day.
He will either shield you from suffering
or will give you unfailing strength to bear it.
Be at peace, and put aside all anxious thoughts and imaginations
Exactly what I needed!!! Thank you Jamie!!
Sam's surgery is scheduled for Tuesday, January 15th. Yesterday I met with a medical care company to talk about some additional help with Sam's daily pin care and wound care. Because of Sam's sensory issues I'm pretty certain that he will not like the idea of pin care and when Sam doesn't like something he can make that process something to dread...sorta like hair cuts or cutting Sam's fingernails and toenails. I choose to take on haircuts when I feel strong, can tolerate the screaming and swatting and if I'm really feeling empowered I will do the nails right after the shower...and then I feel like I've put in 8 hours of manual labor. I love that little boy with all my heart but even I realize how difficult he can be when he doesn't like something and this will be a daily something.
Pin care, flossing pins, changing bandages, repacking pins is an area that I know I can get myself through but I'm going to need some help. As I size up the members of my family...I quickly realize none of their personalities are a really great fit for a daily scream-a-thon session of what will seem like torture to Sam (unless he surprises me and handles it better...of course, keep in mind...I've been waiting 12 years for the haircut and nail care to become easier). I'm picturing Jeff coming home later and later from work, Ben finding reasons why he has to stay at the shop and Danielle suddenly living at her friends houses. I don't want them to dread or feel obligated to partake in the torture...so I'm hoping the medical assist will keep peace in the family. There is something about being a Mom that obligates you to just get through it, to somehow make it work, to put aside your feelings and keep focused on the medical necessity of why you are doing it. I know if we had to get it done...we would...somehow, someway but a little help along the way will be a blessing.
Today we had Sam's pediatrician pre-op appointment. We went over his current health, surgical issues and Sam was given the go-ahead for surgery. One more pre-op appt. in Baltimore on Monday and we should be good to go.
A common question I have been asked a lot this week...Are you ready???? I don't think as a Mom you are ever ready to see your child go through something like this. Every surgery, every medical procedure hurts my heart and challenges my mind to figure out the best way to comfort Sam, to let Sam know I am here for him and we will get through this together. If I could step in and take his place I would. I think the physical pain would be less than the current strain on my heart and mind. By the time Tuesday gets here...I will be physically, emotionally and mentally drained and maybe that's how it is supposed to be so you can pour yourself into God's hands and he can mold you, strengthen you and lift you back up. I found this prayer to comfort me as Sam heads into surgery. It seems to cover everyone involved and I ask that you pray it with me on Tuesday morning:
I surrender my son to the physician’s hand,
The surgeon’s knife,
The nurse’s care,
Placing his body in the cradle of others,
Just as I pray for you to hold his soul with Your loving hands.
Bless his surgeon with a steady hand,
Keen vision and a passion for healing.
Bless his caregivers with wisdom and skill,
With compassion, focus and dedication.
Bless our family with ease and comfort,
Energy and endurance, tranquility and peace.
Source of life,
Bring Your healing power to our son
Samuel Henry Mayer.
Remove his pain,
Relieve his distress,
And cure his body, mind and spirit.
Bless him with strength, courage and hope
So that he may know life and health,
Joy and love.
And grant him a full and speedy recovery.
Blessed are You, God of mystery,
Source of health and healing.