It is only through my faith that I can quiet my mind and give all those worries and anxieties to God. When I get past all that...I tell myself "I have to have hope"...seems like such a simple concept and yet that too is easier said than done. Because part of me doesn't want to get my hopes up too high. I really thought that after the last surgery things would be better but they weren't. I had hope...and where did that get me??? But then I remember it got me through and I need hope to get me through again. Believing in Dr. Standard and his ability gives me hope, knowing that Sam could be better and have less pain gives me hope, visualizing Sam walking with a better gait and riding his bike again gives me hope...but ultimately relying on God gives me hope.
I think to really appreciate the depth of my thoughts you would have to be in my head but let me share just a few of these thought processes with you. Out of pocket cost??? Checked with insurance to see if pre-authorizations are needed and if the hospital and doctor were in network. Deductibles went up this year so checked the new rates and out of pocket ceiling before insurance takes over. Title 19 does not transfer to out of state surgeries so that is not an option. Check with Family Support and Waiver to see if they can provide any financial assistance. Airline, gas, lodging, food need to be added in. Talked about therapy requirement with insurance after surgery, thinking 3 to 5 days a week in the pool since land therapy will probably not be effective with Sam due to his lack of cooperation. Contacted the YMCA aquatic director to inquire if Sam will be able to go into their pool with the external fixator in place...sent video showing child swimming with external fixator. Contacted 2nd therapist to help cover the needed aquatic therapy keeping in mind what insurance and Title 19 will cover. Insurance explained they will cover 20 visits and then will need medical necessity to cover any more (oh joy). The external fixator is on for 4 months at least.
Talked with social worker about changing Sam's respite care to medical care to help with the daily pin care and set up a meeting in January with Bright Star Care to discuss Sam's needs. I'm really hoping that works out to save my family from what will quickly become a dreaded daily chore.
Made plans to meet with Sam's home program advisor, Ellen Doman to plan out Sam's priorities in the areas of education, processing, speech & language, respiratory rehab, keeping him engaged and not stimming and overall review of where we are at and short and long term goals for continuing progress. Keeping Sam engaged and not allowing him to withdraw in his own little world is a top priority. Sam has made so much progress in being social, communicating, and improving his processing that I don't want all of that to backslide too much. Soooo what keeps Sam engaged...Netflix, Ipad, conversing, games like basketball, nerf guns, balloon badminton, remote control vehicles, air hockey, puzzles, pictures of family or places we've been, puppets (love/hate relationship with those) and the list goes on... Now taking that list and figuring out what to pack is a whole nother process. Took laptop to our favorite computer guru, The Help Key to make sure it is working properly and that the camera works for Skyping with Ben and Danielle, Wifi set up for Netflix, the disc drive works for movies and educational discs like the Hear Builder series and added a wireless mouse so Sam can easily use the system. Purchased a basketball game I hope to be able to install in Sam's room to encourage him to move his upper body which will start working on the respiratory rehab. Sam got wonderful remote control vehicles for his birthday to drive around the hospital room and crash into doctors and nurses, Hee Hee. Packing the puzzle board we purchased for his last surgery that allowed him to work on puzzles while in bed. Pictures of family loaded on the Ipad and bringing puppets even if he just needs to throw them across the room to communicate he's not happy or he's frustrated in a safer way. You can never underestimate the need to do something physical to relieve pain or frustration...I always try to incorporate something into Sam's recovery. Sam's white board and markers to help facilitate his communication since Sam often struggles with pulling out the right words or responses and often finds it easier to choose them from his board. Add to all of that Sam's respiratory equipment, acapella, spirometer, nebulizer, inhalers and emergency oral steroid and the fun things to encourage breathing like feathers, pom pom's, whistles, candles and party favors. Sam's pulse ox so I can check his respiratory function as we travel. The flip video to tape therapy sessions for the therapists back home and pin care for the medical help.
Having Jeff check the van to ready it for yet another road trip and packing extra pillows and blankets for the ride back home to keep Sam warm and comfortable.
I am discussing Sam's dietary requirements with the dietitian at Sinai but will also need to bring along some of Sam's go to diet items for his time at the Hackerman/Patz House. His millet/zucchini bread, coconut kefir, fermented veggies, goat milk and supplements. I will also need to pack Sam's arsenal of essential oils which help with his immune system issues. Working on getting some XXL pants shortened for him to wear after the ex-fix is in place and having a swimsuit altered to accommodate the ex-fix. Oh yeah...and then I have to pack clothes, wheelchair, walker and anything I might need for this journey....valium, alcohol, a ton of chocolate...just kidding about everything...except the chocolate. Jeff and I will need to pack our clothes, Jeff's desk from work and snacks/beverages needed for the road trip.
Then my thinking switches to Ben and Danielle and I need to notify the school of our plans, update Ben's Dragon Naturally Speaking on the computer, check in with his go to person so they know Ben will need to come to them in my absence for any additional help. I will be working with Ben through Skype and email to help him with his school work. Print out Danielle's practice and sports schedules and driver's ed training so I can arrange transportation for her. Arrange with grandma's and local family to check in on them and invite them for dinner and serve as back up for any school contact that may be needed in case of illness or when they travel out East to see Sam. Put money in their lunch accounts and find something special to leave with them from Sam.
Make plane reservations for Jeff and Randy (my brother in law) who will be coming out to assist when Jeff returns to work. I am so thankful to have family that steps in, supports and helps make all this possible. I would be lost without them.
To prepare me I am taking more walks, working (which is a wonderful break for me). I know that sounds crazy but when you are an A type personality, keeping busy is what often times gets you through and helps you to remain grounded and focused. The paycheck and employee discount is just a fantastic perk in my case. I am highlighting my favorite verses in the Bible regarding Strength, Faith, Hope and Love and would love to hear any and all favorites from my blog readers. Sam and I are reviewing the Book of Proverbs which contains an awful lot of wisdom and we have increased our daily prayers.
Throw in hitting a few things on Sam's home program...the priorities...like auditory processing, speech and respiratory exercises with aqua therapy twice a week and you get a glimpse of my life. Oh yeah...don't forget the regular stuff, laundry, dishes, cleaning, grocery shopping, and making dinners and lunch.
Now add in Christmas and every thing that comes with it and life is...well...a little hectic. But that's where Sammy steps in and teaches me to take it a day at a time, to count my blessings, to worry less and laugh more, to focus on the important stuff and let the rest pass by. If I don't get cookies baked, birthday thank you's sent, Christmas cards out on time and all the presents wrapped...I know life will go on and I have long given up on beating myself up on those kind of things. If you know me, you know I appreciate everything and everyone... my schedule doesn't always allow me to stay in touch or reach out but I try to keep my focus on the things that matter, my faith, my family and my health.
With all that said I still struggle with the natural feelings and emotions that come with all of this. I have anxious moments, outbursts of emotion at the strangest times, feelings of happiness and sadness, worry and hope, bad thoughts and good thoughts...that's what makes me human. But in my weaker moments...when the burden is too much for me to carry...I have God. I ask God to be with me every moment of everyday to guide me and love me and I never forget to thank him for my blessings.
On one particularly hard morning, after Sam woke up and had numerous pain issues I retreated to my room, curled up on my bed and cried. A commercial came on the TV about Shriner's Hospitals and it showed a little girl in a wheelchair and how after surgery she was able to do gymnastics. Normally this would make me cry more but instead I felt such a wonderful outpouring of HOPE...as if God were talking directly to me through that TV and telling me to pick myself up and carry on...and I did.
When Sam had his first surgery I purchased a little stone with an angel inside called an angel worry stone. It came with this poem:
Give Your Worries to the Angels Poem
During Sam's surgery I kept this stone in my hand and rubbed it, prayed with it and it gave me comfort. I thought I had lost it but when I reached into my winter jacket...there it was.
And that's where the last word of my blog post title comes in...Love. God hears my prayers, acknowledges my concerns and lifts me up over and over again. But I am weak because I am human and those doubts and fears can creep back in as they did this past week, so I decided to keep myself busy. Sam and I ran errands and one of them was to pick out a new couch and tables for the living room with the money I had made from my new job. I wanted to celebrate by adding something to our home for our family. I picked out a beautiful new couch and 4 tables, the couch was back ordered but they loaded the tables on to the truck and Sam and I drove home singing Christmas carols. I put together my new tables which required me to attach the legs and I began to clean out the old tables which have been in our living room for the last 16 years. I found a lot of memories, baby albums which I had to stop and share with Sam, pictures, school projects and some of the not so pleasant items like long forgotten Halloween candy and garbage that my children were too lazy to throw away and just stuck in the drawers instead. But then I came across something that literally took my breath away. I saw a tiny piece of paper with numbers on it that I quickly recognized was from a fortune cookie and when I turned it over...this is what I saw.
I gasped...closed my eyes and thanked God again!! No one remembers putting this fortune into the drawer or where it came from...but I know and I go into the Christmas season happier, calmer, and thanking God for all the wonderful gifts he has given me...including the birth of his precious son...and loving me unconditionally in heaven and here on earth through a little boy that strengthens my faith, challenges my thinking and opens my heart! Merry Christmas!!!