Let me preface this post with: I’m fine. I had my yearly mammogram which yes is totally IMO necessary, and uncomfortable at best. At times I find it painful, not like I’m going to pass out painful but enough that I’m like ok that’s enough. I’m done. So at the end of December I had my annual mammogram; and I was called me back for additional diagnostic images. Well that was a sucky feeling, the worry that “they found something” and it wasn’t good. I made the follow up appointment for this morning. Turns out as per my union contract I am allowed 4 hours paid for preventative health care such as a mammogram. Go union! So anyway, I’m waiting all month for this appointment. To be honest I put it out of my mind and didn’t think about it until this past Friday.
Briefly here and there I thought about the appointment during the weekend. Sunday was mainly consumed by Thomas’ talking and taking him shopping for new sneakers. My guy wanted Nike Jordan’s. Since Thomas will wear the death out of things he likes, he got the Jordan’s. They’re really cool, Thomas has great taste.
So I go to work yesterday, we were busy as usual so I didn’t think about the appointment until I was leaving for the day. That’s when I began to get nervous. We ate dinner and I camped out on the couch watching television; which I really don’t do often. Well watching television and text fighting with Sam over her NOT dying her hair wild colors. You can guess which side I was on. This morning I was up stupid early, like 5:30. I’m usually up at 5 ish for work. My appointment was for 7:45 am, so 5:30 was stupid early. Tommy took the day off for me, he’s great.
We get there on time, I’m called to go in on time (impressive) and all the testing and results were completed in an hour. Like I said I’m fine. The tests were read by a physician at the radiology center and told to me at once. I really can’t complain. Effin mammograms.
I’ve written another email. I might be on a roll. This time it was to the current Pastor of the church I was a member of and used to attend. I’ve rescinded my membership. The Pastor responded much in the way I thought he would. Telling me that my family has been distant from the church (true) and that we’ve been prayed for, they’ve grieved the distance between me and my church family and we have been ministered to but they have disappointed us (?). I didn’t even give an inkling of such. I found the response to my email a bit self depreciating with a sprinkle of hopeful guilt trip. I expected better to be honest.
When I joined this church I was well aware of how conservative they are as a whole. And to some extent I agreed with most of their stances. However I have changed in a way that I can no longer shadow my beliefs. Of course if I were to express those beliefs to the formerly attended church I would be gently told how wrong I am and proven so by extensive quotation of scripture from the Bible. God is perfect, sovereign, all knowing, and does not make mistakes. Even when someone is living a life deemed sinful by those who live a conservative Christian life (such as LGBTQ persons), I find it extremely difficult to believe that God in his infinite wisdom has made an error in creating people who are born a certain way to live their entire lives committing sin which is displeasing to God. It doesn’t make sense to me.
I’m also pro choice. (Gasp!) What I’m writing is not meant to be controversial or challenging. This is my blog and my thoughts. And as much as I may love you, no one will change my mind. We all have solid reasons for how we feel. I’m in no way turning my back on God or feel anger towards God because I’m not getting my way in life. I’m grateful to Him. Without God’s presence and ever so wise guidance I would not be where I am today in my personal or professional life. Jesus Christ remains my Savior. To Him I owe it all.
When I was younger; like registering to vote young; I considered myself not so conservative; pretty liberal but not too liberal. I had a sheltered, young, middle class woman view of the world. At the ripe age of 18 I had a job and was well versed in having taxes being taken out of my paycheck. I didn’t like it but I knew that’s the way things were. Fast forward to me graduating nursing school, my first “real” job and I learned very quickly the value of employment with health benefits. I also learned about welfare and Medicaid/Medicare and where the tax money that was taken out of my hard earned check was going as per our government.
Tommy and I were married and expecting Thomas. After a couple of months and many years of therapies, evaluations, MRI’s, etc… we found that Thomas was special needs. Rarely to never did we not pay for anything ourselves out of pocket or we used our employer provided health insurance for services or doctor/specialist appointments for Thomas. We didn’t know any other way. Until I was told about the Medicaid Waiver program for people with special needs. With the Waiver the government waives the income of the parents and the disabled child/person is eligible for Medicaid health insurance as well as services to help the special needs child. One service we had through the waiver program was a very dedicated woman named Debbie who came every week to my house to work with Thomas on things such as going to stores in the neighborhood, using money, crossing streets safely, etc.. And she would take all my other kids with her. Debbie was one of a kind. Everyone, especially small businesses on Forest Ave knew Debbie and my kids.
You see when you have a special needs child every freaking thing is a secret. And you have to hook up with other special needs parents to find things out. Or spend a lot of your life on the phone or computer going from one resource to another to discover what is are out there. I did a combination of both. I spent a lot of time on the phone and then discovered a priceless online community of moms who’s children were similarly diagnosed like Thomas. Thomas was the youngest of “our” children when he was 6 years old. I learned so much from these incredible women from all over the country. We are fortunate to live a ferry’s ride away from the greatest city on earth so finding doctors who are specialists in Manhattan wasn’t difficult. It’s the day to day living you need the most support for and that’s what these women did for me. They listened to vents, gave praises to doctors and therapist who “got it,” provided invaluable IEP meeting advice and did not judge.
I wouldn’t want to relive those years with my son, things were so so hard. But…I have learned so much from my wonderful friends. That nothing is as it seems on the outside, my favorite: “Normal is just a setting on your clothes dryer,” that everyone has shit they are going through. And most of all, try to be the person you wish you had when you see someone where you once were. A lot of times they won’t listen at first but you can always plant a seed.
I can honestly say I’ve not knowingly or intentionally burned a bridge or irreversibly ended a relationship especially a professional relationship. Until now. A trusted specialist physician I was a client of; who does not take insurance; partnered up with a physician of the same expertise; tripled his rates, now requires a credit card on file for payment and has limited his availability to his clients. This was announced over 3 separate emails with a spin on the details as if this was a great, positive change for the clients.
To be honest I was at first appalled at the changes to this physician’s practice. I had received great care from him, he would accept emails or texts for quick questions or clarifications, and always prompt when an appointment was necessary. I would pay out of pocket and submit a claim to our health insurance company and be reimbursed the majority of his fee so being a patient of this practice wasn’t a hardship. However to continue with this practice under the new policies would be a financial hardship. I would no longer be a client of this physician, it’s not just the increase in his fees, it’s the tremendous change in the practice as a whole. To read the new impersonal emails describing the unacceptable new office policies felt insulting and unreal.
So I wrote an email. I specifically stated that I was no longer this physician’s client. I also stated I would be under the care of a physician who provides more personal and individualized care. Essentially I intentionally burned a bridge. I feel bad about that. I’m really not intentionally snarky, but in that email I was.
I’m sitting in the nail salon thankful that I’m able to get my nails done. Thankful for my husband who is my person who sees my good, bad, unreasonable and irrational self; brings me back and loves me anyway. I’m so thankful for my kids, my family and my friends. I have a small circle of friends I consider like family who are essentially the most loyal non blood related to me; people on this earth. You know the ones; you don’t speak often enough or on a regular basis but when the shit hits the fan there they are. I’m so very thankful.
I was fortunate that I saw all my children plus son in law yesterday, the brand new start of the New Year. Lelly, my Sam and Thomas stayed for dinner while Alyssa and her husband Sam went to his grandparents for dinner. I’m thankful that Thomas is doing well in his group home and that he has a wonderful nurse who oversees the group home residents, and is on top of his meds and the long term side effects. Her name is Peggy and she never hesitates to keep me informed of all things Thomas.
Tommy and I drove my Lelly to her home in the city on the upper east side. She had a heavy jacket and other things to bring back and for her to commute taking public transportation would have been too much. We had a nice ride and when we arrived at her home we went up to see the apartment. Leaving her was still difficult. I hugged her for what seemed forever. Poor kid stood there waiting for me to let go. I’m glad she’s good natured and loves me enough to let me hug her for as long as I want.
My Sam is doing well. I’m thankful she and I are close. I listen to her and I’m grateful that most times she listens to me. I know she trusts me and I don’t take that trust lightly. We both were off (her from school and me from work) for Winter break this past week. We had good quality time together. We both return to our realities tomorrow. And that’s ok. I’m ready to go back- I say that now, haha.
It was really nice to see Alyssa and Sam even if for a little while. Alyssa and Lelly took the ride to go pick up Thomas and they were all funny together in the car. Thomas gets dramatic when he tells us something going on in his life and the girls are so used to his drama we’re all like, “ Okay Thomas: We get it!” Or if he is causing trouble in his house or day program I’m always saying, “Stop! I didn’t raise you to act that way so cut the crap!” Alyssa is such a great big sister to everyone. She’s sweet and honest and never hesitates to stick up for a sibling. I’m very thankful she grew into the person that she is.
So think about things and be thankful. We all have shit in our lives that can cloud the good, but the good is still there you just have to look a little harder to see it.