My husband is so amazing! In spite of all the challenges with ALS he tries to stay positive and appreciates everyday as a wonderful gift from our LORD Jesus Christ. Small things in life like enjoying the sunshine, taking rides/walks in the neighborhood, watch football, or eating cannolis always puts a smile on his face, among many other things… It truly is a blessing to experience even the simplest things in life.. To be able to leave the house and just come out means a lot to both of us. There is so much more I want for him. So many things I want him to experience. I want him to have that smile every day. But there are days when its really tough. Its hard for anyone to even imagine how it feels not to be able to move even in the slightest way, not even be able to relieve an itch or move any part of the body when in pain or feeling discomfort. Tommys facial muscles are not as flexible as before. The other day he wrote on his Tobii (Eye Gaze machine), “I can’t smile..” and to show me he tried to move his facial muscles several times and he couldn’t. For you who know me well, know I always look for an solution, so I immediately told him something funny and yes, there it came, the smile he was struggling with. And I told him , see you can still… but yes, there are days when smiling is hard..
It is starting to become more and more difficult. It has also become harder for Tommy to use his left hand, the last functioning one. His speech is almost gone and he is more or less completely dependent on the Eye Gaze machine to communicate. Nevertheless his passion for his friends and people we meet makes him stay positive and focused and there is always an encouraging word from him no matter good or bad day. Right now we are working on a video project Tommy has had on his heart for a long time. It makes him feel good to put things together that he has passion for.
I recently came home from an unplanned visit to Sweden. My dear, wonderful mom recently passed away. I really wanted to be there at the funeral and my siblings expressed they really wanted me to come and offered to pay my ticket so I was able to go. It felt important for me to go but It was at the same time so hard because how could I go without Tommy..? We had not been away from each other at all in a long time and suddenly we would be apart for a whole week.. But our amazing, beautiful loving friend, our Sweet Tobie Giddio offered to come out and stay with Tommy and take care of him.
What a wonderful thing to do for us! It truly felt like a stone had
fallen from my chest when I heard her encouraging words.
We did though have one big challenge. How would the transfer work for Tommy, going from the chair to the bed and so on with somebody else doing it?.. That could turn out to be a huge problem. So I decided to prepare all information regarding everything, and as good as I possibly could with pictures and instructions. Tommy and I even filmed a transfer with the help of Tommys brother Mike.
But later the transfer turned out to be a problem… I had decided to let our helpers practice do the transfers before I went (they haven’t been doing this in awhile) and to my fear it turned out not to work as I had hoped for. Thats when I realized Tommy and I seemed to have found a technique that only worked for us but it was more or less impossible for our helpers because Tommys strength in both his legs has become so much weaker now. I felt so worried that I at one point changed my mind on going but my husband said very firmly “I want you to go. You need to go and everything will be ok”. Those words made a huge difference to me. It gave me the strength I needed and the faith to trust everything would really be ok. I was still nervous that it would prove to be difficult even for Tobie with all the responsibility. But nothing could have been further from the truth. She made it work so beautifully! I could not have felt more at peace in my heart learning she took care of everything in such an amazing way. We Skyped a couple of times when I was in Sweden and it was so wonderful to see Tommy and Tobie and talking and knowing everything was fine! It made me feel so thankful and blessed! It also made my time in Sweden so much more precious and so much more a loving and forever memorable experience. It gave me the peace I needed and the rest in heart to reflect on all the sweet memories of my mom. I am so grateful I was able to go and for all the love and closeness I shared with my siblings.
There are no words to express our gratitude to everyone who came through for us. We are so blessed with so many wonderful friends who have reached out their hearts to help us. Thank you Kurt Sexton for your amazing kind heart! Thank you Doris Sexton for taking me to and from the Ft Lauderdale airport and for the yummie goodie bag you put together for me! You are truly such a beautiful sweet loving friend inside out! And thank you so much Donna Webb for caring for Tommy and to Hoody and Janet Sexton who offered to take Tobie to and from the airport. Thank you Mike Mastro, my sweet caring brother-in-law, for all the beautiful flowers and for everything you always do for us! To all of you, we love you so very much!
And thank you to all of you who are supporting us in so many ways and helping us financially. Thank you so much from the deepest part of our hearts! We are struggling financially right now and to be honest it is a big challenge to us, but the miracles keep happening. We ran out of money for Tommys treatment just the other day. But Thank God for Summit Church who sent a check to the Clinic so Tommy could continue a little longer with the treatments that are so important. We are truly so blessed! Thank you Summit Church, we love you more than words can say and pray that all the amazing loving things you do for us and for so many others will come back to you in such an abundant, wonderful and overflowing way! Praying for all the wonderful blessings directly from our heavenly Fathers loving and kind heart!
Once again, Thank you all who have helped us so much in the past. There are no words that can even come close to express the love and gratitude we feel. You made it possible! You are all so amazing, we really want you to know how much it means to us and that you truly make a huge difference in our lives.
Have a wonderful and blessed week and GOD BLESS YOU ALL!!!
Love, Tommy and Yasminne