It has been a long summer. After another month in the hospital (split between St. Joe’s in Denver and M.D. Anderson in Houston), I am finally out and allowed to recover at “home”. Mari and I anxiously await the go-ahead to travel, which we anticipate we’ll get this Friday. Then it’s back home to rainy (really?) Denver. The hospitalization was difficult to say the least, and I am glad to be out and living in the apartment Mari and Santos have been occupying since our arrival in Houston nearly a month ago.
Each trip to Houston and each hospitalization has been getting more and more difficult for Santos. As his awareness grows seemingly each day, so too does his frustration with our present life circumstances. He has been a trooper–and he continues to be–but he also is beginning to express his feelings to us and he has a lot of anger. He told Marisol last night, “The medicine makes Papi tired. The medicine makes me angry.” I have been having more trouble managing pain this time, and as a result am on more powerful narcotics and higher doses of them. He is correct in pointing out that they don’t exactly help me to be much of a family man.
Despite his own process of my illness and recovery, Santi continues to offer many opportunities to engage him in play as he has not left my side since I was released on Wednesday. Wherever I go–which is really bed to couch, couch to chair, chair to bed–he is glued to me, waiting for me to settle in so he can hit me with a barrage of play. He brings toys, colors, puzzles, you name it, to my bedside and offers me two options–play or tantrum. As often as I can, I choose play. It has been really good to reconnect with him in ways that are meaningful to him and I think it helps to assuage some of his frustration. He seems to take renewed comfort in the knowledge that I am still his dad and there are still things we can do together. And to be honest, I think it helps assuage some of my own frustrations.
On top of the drugs, I am also a great deal weaker than when I left the hospital in late May. I was bedridden for nearly four weeks, not even allowed to get out of the bed to use the restroom. As a result, I am dealing with pretty severe muscle atrophy and stiffness in my joints. The gains I had made through physical therapy are gone. That’s been hard for me, too. I anticipated a long road to recovery, but not one this long or this difficult. It took me a while to reframe my mindset about the whole ordeal, to recover some positive thinking and momentum. I imagine most people in my condition entertain thoughts of giving up at some point in a long recovery, and I, no more superhuman than when this all began some eight months ago had to work through those feelings and fears. I continue to work toward being someone who chooses to put their all into recovery because of the joy that life brings rather than the fear of being a cripple, an invalid, an insert-negative-label-here. It is not easy, and there are no guarantees I will recover the way I would like to but remaining positive is a must for all three of us. The support we have received and continue to receive from all of you, as well as the constant support of Marisol and Santos has been a tremendous help in getting me back on track mentally and, as time rolls on, physically.
Other tangible sources of support for us have been my mother-in-law Blanca coming down from Chicago for the past week and Santos’ little buddy Jioh (and his parents). They invited Mari and Santos to the circus and a good time was had by all–even though Santos fell asleep until intermission. This outing has provided him with a great deal of storytelling fodder about lions and elephants and scary clowns. I also want to thank my boss Natalie Jenkins for arranging for my mother-in-law’s travel. This was a big help.
We had a positive appointment this morning with the thoracic folks about the blood clot surgery on my foot. They continue to be encouraged by my recovery from that procedure and don’t see any signs of long-term damage. The last hurdle for now is an appointment with Dr. Lin, the orthopedic surgeon, on Friday. We are hoping to hear I am well enough to travel and that I can get the staples out of my incisions. They have been one of the major sources of my pain.
If all is well, we will fly home on Sunday. Our next trip to Houston–barring any more unforeseen setbacks–is set for late October. That will be the six month mark for the hemi-pelvectomy. We look forward to good news and a smooth recovery from here on out. Thanks again for all your words of encouragement. They mean the world to us.
Jeff,
Just wanted you to know what an inspiration you are to me. I also wanted you to know there are people, like me, pulling for you and sending good vibes, who you may not even be aware of. I get the rss feed so I don’t miss anything. Thank you to Marisol for all your posts. Have a great day!
Susan Chrobak
Dear Jeff and Mari,
It’s hard to know what to say. I truly can’t imagine what it must be like for you, but my heart is heavy for what you’ve been through. I keep praying for healing for you and hope that this is the last “bump” in the road. Yes, it’s hard for Santos, but the good news is that kids are more resilient than we are and he will become stronger for this experience. May God wrap His arms around you and give you strength! Affectionately, Sue Frederick
Jeff,
It’s great to hear from you and to see things a little from your perspective as well. The updates are much appreciated.
Love you both (and Santos too),
Michelle
Hi Guys, still have you in our prayers. Appreciate the updates. Jeff, your office awaits!
Todd and Susie
Jeff and Mari and Santos
You are in my thoughts and prayers daily. What an incredible ordeal you’ve had. May you continue to experience physical, emotional, and spiritual healing. You guys are my heros!
Love
Cindy
Dear Jeff & Mari & Santo,
I just read and caught up on your journey and am so sorry for all the set backs and challenges you have had to go through. We were in Denver, just a week ago, I think the same weekend you were scheduled to return and stayed with Penny Kriebel. She had updated us some. We were in Denver unfortunately to deal with a family crisis of our own, but have come through the storm and are helping our grandkids and their mom with trauma of our oldest son trying to commit suicide. He is in outpatient treatment and we are praying he can stay away from alcohol and take advantage of the counseling and heal and move his life forward. Tara became a Christian while we were there and is getting plugged into Providence Bible Church that meets at Manual High. Grandkids seem to be feeling safer and more secure now that dad is out of the home (Tara got a restraining order). They don’t know about the suicide attempt, but are told that dad is sick and getting help. With our two moves this last year and the job and new city adjustments, we have not kept up very well, but know you have our thoughts and prayers and we are asking God for victory for your family in running this race. We want those pink shoes to be retired Mari.
Our love,
Shelly + Ted