I read this description in one of my trashy magazines that are such a great escape for me when my brain gets too busy with things to worry about. The article was about John Travolta and how he is dealing with the death of his teenage son. Now, I certainly do not have the pain and grief that comes from losing a son. Obviously, we were so blessed that Nick was saved and continues to adapt to his new self. However, I seem to be having a harder and harder time with our new normal and where it has left me in my pursuit of happiness and success in life. Perhaps it is because I haven’t been writing about my feelings and our progress so these thoughts just jumble up in my head and give me a perpetual anxiety attack. Living life one day at a time is really difficult. I cannot remember the last day that I didn’t cry at least once. I can put on the act, walk the walk, talk the talk and keep up with work, but on the inside, I am sometimes just so sad and just fighting the hopelessness that comes with being afraid of whether I can make it another day. Geez - that sounds so melodramatic, but it’s been how the last month has been for me. Am I a good mom? friend? employee? partner? I don’t know. But I do so want to be.
Hence, I am going to try to post today, to give thanks to some very generous people who have helped us financially, spiritually and with a kindness that I know that I don’t deserve – but my family does – so I thank you all for caring about the Cafferky family, in spite of my shortcomings as a friend, neighbor, employee, partner and sister in Christ. I’m so embarrassed and tired of begging for money and help when so many other people have needs like ours.
Please forgive my sporadic updates to those of you who continue to pray for the Cafferky’s and desire to know what is going on with Nick. I know I have been promising to tell the story of how Jude, who seemed to be our savior as a caregiver, blew up and ended on such a bad note. I’m still so sad about the whole thing but it is what it is. However, I just wanted to tell you all the story and get it over with.
Jude, from the Philippines, came to live with us in November, recommended by Josh Basile and his caregiver, Dan. Jude had just arrived in the United States when we met him and we hired him on the spot. We were under the impression that we could formally sponsor him for a green card, and thus we could expect that Jude would receive a temporary work permit in a reasonable amount of time so that we could employ him legally. The immigration lawyer we worked with, gave Jude and his sister, Algerica, the impression that a temporary work permit could be obtained in a 3 – 5 month timeframe. This proved to be a naïve and overzealous ambition.As I am working in the technology field, supporting National Security Accounts, I knew that the process to get me “cleared” to work with my customers would be imminent. With that, and frankly, my very strong beliefs in legal immigration and distaste for those who try to get around the rules, I knew that we would have to keep everything on the “up and up” with respect to Nick’s caregiver. In addition, while we were treating Jude as a visitor to our country, he could not be paid by Nick’s Medicaid benefits. So we were paying Jude an “allowance” and providing him with our home as his home, until his paperwork went through. I don’t think that Jude had a full appreciation for the amount of money and time we were spending to help him to help us and how important his legal immigration status was to our ongoing relationship. When March came, and I was informed by our immigration attorney [SIDEBAR: His name is Mr. Winston Tsai of Bethesda, MD and I DO NOT RECOMMEND HIM AT ALL. He is rude and condescending and habitually misled Jude, Algerica and me) that we could not expect any movement on Jude’s status for at least another six months. At that time, I called my congressman, Frank Wolf’s, office and I was educated by a very kind Judy McCary about the real process. I found that we were so far from where we needed to be that Jude, as competent and as helpful as he was, may not be the person for us.
Since we were losing so many Medicaid benefits, we decided to hire another caregiver to work with Nick during the day – one who would meet the citizenship requirements for our benefits. My thought was that we would continue to have Jude live with us, pay him a living allowance and have him be a part of our family, helping us as he could, while we continued the process for his green card. Unfortunately, that meant that Jude’s pay would be cut in half, as many of his caregiver responsibilities would be handled by our new guy, Dennis. Still, what we were paying him plus room and board, was a strain on our finances and we didn’t want to take money out of Nick’s fund for this.
Evidently, this cut in pay – which I continue to maintain was not a salary but rather living expenses so that he could build his life here as we endeavored to make him legal – caused him great dismay. He was concerned about supporting his family at home, but we were totally open to him finding other work during the day to augment his family allowance. I think that Jude didn’t understand that our provision of his own room and all living expenses (including the fact that we were paying for his immigration process) was actually a compensatory benefit. In addition, Jude felt that he was being taken advantage of in some way, and that the new guy, Dennis, was just leaving work for Jude to do. I really tried to find some way to get Jude some additional work as well as have him help us with the chaos in our home. However, this did not suit Jude. At the end of March, Jude came to me, in the middle of a work day, and broke the news to me that he was going to move out and live with his cousins in Maryland. This really shocked me for a variety of reasons and I was very upset. Unfortunately, I had to go out to a scheduled appointment, and it was a Friday so Jude was leaving for the weekend. I begged him to wait on his decision and that we would talk about it when he returned on Sunday and I was sure we could work it out.So Sunday came – and Jude did not show up. On Monday morning, he did not call, he did not post, and Mike and I realized that he must have quit on us. I sent text messages and called him with no answer. Honestly, he has not spoken to me since that Friday.THe next Wednesday, Algerica, his sister, called me – but I was too emotional to deal with the situation (it was end of Q1, I was trying to close a deal, we were leaving to visit Lauren in CA in 3 days and needless to say I was stretched beyond my limits.) Mike talked to Algerica who indicated that Jude had “not yet decided whether he would be working for us anymore.” Mike, who was not as much of an advocate for Jude as I was, let Algerica know that when someone doesn’t show up for work and doesn’t call and refuses to answer calls and text messages, that they have made the decision already. I mean come on – I was hoping that Jude was loyal to Nick and wanted to be there for him, and I thought that we were going out of our way to help Jude with his immigration issues, and trying to make him feel like part of our family. Obviously, if he could just not show up or call, he was not committed to my son’s well being as I had thought. And that, closed the door for us. So on April 3rd, we left for CA, sad that our plans were changing but resigned to it.Then, weirdly, Jude (through Algerica and email – we still have not spoken to him since he left) indicated that he wanted to come back. Well, that isn’t going to happen. In fact, I now believe that he did this all to “call our bluff” – like see how bad you need me….now you will give me what I desire. Well, the Caffs don’t respond well at all to ultimatums and silly games. THEN – Jude sent Mike an email that sort of indicated that I was the problem and that he wanted to come back if Mike wanted him. I guess Jude really misread our family dynamic, because I was his advocate from day one and he burned that bridge.So now we have Dennis from 9 – 5. He doesn’t do the bowel treatments and he doesn’t do all of the stuff that Jude did to keep things orderly and Nick exercised and bathed, etc. But, I am the only one that seems to mind that. And truthfully, we really need to focus on getting help in Blacksburg for Nick, so this just expedited the inevitable, as Jude could not go to VT with Nick without the proper immigration status.There is more to the story, but that is the net/net. Jude wanted more than we could legally provide to him. Honestly, I have never met a person with such a servant’s heart yet was so prideful at the same time. With that, Nick doesn’t care and Mike doesn’t care, so we continue to persevere with the help we have now and we are praying that we will find the right help for Nick when he leaves for his Freshman year at VT.
I feel really bad about how this all ended with Jude. And I do miss him keeping our home in order. Although, I do not miss the way he seemed to judge us about the way we live and our disorganized and chaotic life. I mostly miss him folding the laundry!
Anyway – that is the Jude story. If anyone knows of anybody in the New River Valley area (Blacksburg, Christiansburg, Salem, Roanoke, etc.) that wants to consider a caretaker role for Nick, please refer them to me or Mike. We are hoping we can find someone to live with Nick in his dorm room (maybe a student who is willing to step up to some responsibilities to help Nick in exchange for us paying for his room and board.) In addition, we will need to have another resource that will be able to help Nick with morning and evening care (showers, bowel treatments, helping him get dressed for the day and in bed at night.) Please pray for us that we will find the right help.
So I just wanted to get this over with. I will be following up with another post to talk about where we are now, thank many for the last two fundraisers (The St. Patty’s Day party and the Cinco de Mayo Party) and all those who continue to pray for us and who have been so generous with time and money. These last two months have really set me back emotionally so I have had a hard time posting, but I will. Mostly because its the only way to stay in touch when our lives are so busy.
As always, thanks for caring. Please pray for Jude, that he can find a situation that works for him and his family. And thank you for your continued prayers for us. While I feel overwhelmed and sad and melancholy (it didn’t help that I was horribly sick for almost two weeks) - please know that my faith remains strong. I know that God has a great plan for me, and for my family. I will continue to place my troubles at the foot of the cross and keep the faith that better days are ahead. And I humbly ask you all to pray for Brian Murray who has another surgical procedure on Tuesday. May God give his Doctors and Nurses great wisdom and skill and may their family be blessed with courage and reasons to be grateful.
A couple of shout outs - Jo Anne and Melanie - I couldn’t survive without you. Luz, Liz and Juls - thanks for keeping me grounded in Christ. My beloved husband who is walking with me through the fire. Kelly, Cristy, Dana and Diane - thank you for Tuesday - what a surprise.
PS - for all of those who donated at the St. Patty’s Day party, we found out that the Kidz Clubhouse is now closed so Mike sent back all of your checks. If you still want to donate, please make checks to the Nick Cafferky Special Needs Trust. Unfortunately, this is not a tax deductible trust, so if you can’t do it, please know that we will understand. I still have lofty goals to send thank you notes - we shall see. But know that all of you are so appreciated and are always in my prayers.
Love in Christ,
Elisa “not always a basket case” Cafferky