I haven’t been attending church lately. For no particular reason, I just became busy with other things, running errands, catching up with laundry. I wish I had a “good” or exciting reason for my absences but…no. And for every Sunday that you don’t go it gets easier and easier to not go the next Sunday. That’s the merry go round I was on. So today I impulsively went to church. And I am glad I went. It was like coming home.
I’ve been attending my church about 13 years or so. I can’t remember exactly the year we began going. Samantha was young enough to be in their nursery, I’d say she was around 2. Whoever was in charge of the nursery put a sticker with a number on the child’s shirt and the parent had the matching sticker. They used to light up the number over one of the exits if they needed you to come for your child during the service. One Sunday I was watching this number flash off and on and thought, “hmm that’s interesting…”. I had no idea Samantha was being a holy terror downstairs in the nursery that day. It was my number that was flashing! Needless to say the workers weren’t very happy with me when I picked her up.
After everyone got older, especially Samantha, they all attended Kids Church. It was nice, the members even incorporated Thomas into the kids church so I could attend the service.
These days when I do attend I’m either by myself or maybe with Samantha. And it’s ok. I don’t mind going alone. You don’t need an entourage to worship. The music is nice, but I really enjoy hearing the message. Today our Pastor talked about what it means to be a disciple. That we are as much of a disciple as the 12 men Jesus hand picked. Pastor John also spoke of the recent passing of his dad. I had tears in my eyes listening to him talk. I immediately thought of my own father’s passing and the next thing you know you’re trying not to cry because you totally know where he’s coming from.
I would like to get back into my previous habit of attending church rather than stick with my new habit of not attending.
I posted about Thomas last week and a friend mentioned the grieving process to me concerning my son. I don’t know if you ever stop grieving when you have a special needs child. Today I do accept Thomas as he is, I love him more than anything, but there are times the sadness hits that things aren’t the way you want them to be. And I don’t think that goes away. I ran from doctor to specialist to doctor again, over and over when Thomas was a very young toddler/child. When he was 4 years old a psychiatrist offered me a list of medications to look up and decide if we wanted to go that route. I remember they were mood stabilizing meds. We declined to put Thomas on meds at that time, only to have me get off my high horse a few months later when I changed my mind; but the way the practice worked was that we had to see a therapist all over again, then be referred to the psychiatrist, a process that could take months (that we already completed prior, please…). We were getting ready to move back to NY and we shelved the issue until we were settled back here.
When we were back in NY we tried therapy for Thomas again, a psychiatrist, a couple of meds that pretty much made him worse and I decided to take him into Manhattan to a mood disorder specialist for him to rule out bipolar disorder. I figured who better than someone who does this day in day out? It was the first time ever I drove in the city alone, big event trust me. Right before his 6th birthday the specialist psychiatrist diagnosed Thomas with bipolar disorder and gave us his medication recommendations. I’ll never forget him saying, “Even if you decide to do nothing/not put Thomas on medication you have still made a choice, don’t think otherwise.” We did decide to chose medication but little did we know this was only the beginning of trying to find out what was going on with Thomas. In the meantime we tried to be “normal” if there even is such a thing. I went to work at a pulmonologist office, private practice. I learned a lot and was paid very little. But the experience of different responsibilities besides Thomas and my girls was worth it.
It wasn’t until Thomas was 12 years old that the Manhattan psychiatrist specialist refer us to a well known (in that circle) neurologist wayyy uptown in Manhattan, our view was the George Washington Bridge. It was Dr. Arnold Gold who gave my son the most complete physical assessment of any neurologist and reviewed Thomas’ past history and tests so intently. He was the one doctor after all those years to diagnose Thomas: With static encephalopathy. Which is essentially brain damage that won’t get worse and won’t get better. He said it could have happened at the time of birth or before birth in-utero, we would never know. And that’s ok. So we had this diagnosis that literally hit us like a punch in the stomach. Who knew?? We took that info back to the psychiatrist who agreed with Dr. Gold but stood by his diagnosis of a mood disorder. Being that Thomas responded well to the bipolar meds I agreed with him and still do.
So there’s the short version of what we went through to simply get a diagnosis for Thomas. Back in the day a few professionals didn’t understand why we wanted a diagnosis so badly. They said we should be content treating his symptoms. Unacceptable. As a parent you want a name to what is affecting your child, something tangible. I remember a friend calling it naming the beast.
I have a very sharp memory of Thomas’ years growing up. All the specialists, the good and the horrendous. Names I see today and wonder how they still have a medical license. Maybe because Thomas was our first, maybe because it was traumatic, I don’t know. I do remember I grieved when I had to look at special needs preschools for Thomas when he was 3. I had had Alyssa at that time, she was 1 year old and my mom came with me. I remember thinking, this is not the way it should be…and holding back tears when listening to the principal talk about how great the school was. I didn’t care…all I cared about was that I “shouldn’t” be there. I ended up choosing a school but then we moved to NJ.
It’s part of my son’s routine to come to my house every Sunday. Every Sunday without fail. It’s funny because when Thomas moved into the group home from the residential school I had all these plans in my head of how much time we would spend together now that he lived 10 minutes from our house. That we would go to the mall on a week night after having him over for dinner, attending church together…nope. In typical fashion when it comes to my son, nothing goes the way Ive had it planned. I can honestly say any plans I have ever had for my son have not gone the way I had pictured. That doesn’t mean life went in a horrible direction; just not how I had pictured and planned out in my mind.
I was so happy to take Thomas to church. We sat together and he started talking during the worship singing, ok no big deal. We sat down and the Pastor began preaching. Thomas started rubbing his nose, going to pick his nose. I told him to stop. Thomas then says loudly “I need a tissue Mom! I need a tissue!” Of course I’m not that mom who carries tissues in her bag. God must have felt sorry for me and the woman sitting behind us tapped my shoulder and said,”Here, I have tissues.” I wanted to hug her. After blowing his nose Thomas proceeded to talk through the entire service and he didn’t use a church voice. So there went that scenario.
As far as seeing Thomas after work and his program, there doesn’t seem to be enough time. We both arrive home around 3:30, I have to make dinner, clean up and prepare for the next day. So we are left with Sunday’s. On Thomas’ terms.
He’s picked up around 1pm and brought here. Thomas makes sure he takes his 3pm meds by consistently reminding me that he needs to take them. We usually eat dinner around 4:30-5:00, dessert follows after cleaning up. Thomas then proceeds to remind me about his 7pm meds. I give the 7pm meds around 6 and after that he’s ready to go and you had better be ready too. He knows the next day is Monday and that he has program to attend.
I remember when Thomas was very young, he was wearing a moulding helmet; his head was misshaped from not turning it to the other side. He only turned his head to the right. When I brought this up to his pediatrician at the time I was pretty much blown off. Turns out Thomas had a condition called Torticollis. He was also delayed in meeting milestones so we had Early Intervention services and physical therapy was one of them. I was questioning whether Thomas needed to continue physical therapy, what did I know? So our pediatrician sent us to some specialist. I remember the man had no idea why we were there (so much for professionals communicating). I remember his assistant told me to continue the PT in case he needed it for school and needed special Ed services. Thomas was 15 months old. I cried and cried. And I honestly had a premonition that my son wouldn’t be able to read. I was right. Thomas does not know how to read. I also remember leaving that building holding him so tightly. He was mine and I never wanted to let him go. I never imagined how our and his life would take such a tumultuous turn as the years progressed.
Judgement as in decision making. As a nurse your judgement can be questioned quite often or people phrase their concern in a way that you know they don’t agree with your nursing judgment. I went to nursing school and worked so very hard for my license. They were probably the most difficult 2 and half years of college. I sure as hell don’t want to lose that license. When I’m at work I’m making nursing judgements all the time. There are times I have to explain myself and that’s ok I have information that the other person doesn’t have. I have education that the other person doesn’t have. We have many medically fragile students at the school where I work. Sometimes situations arise concerning students who are not medically fragile and nursing judgements are made. Sometimes they make sense to the staff, sometimes we have to explain ourselves. It’s difficult some days. To have to explain why you are or are not doing what other people think you should be doing.
It’s been my experience that one needs somewhat of a thick skin to be a nurse. And you need to be able to stand by your assessment of the situation and then your judgement of what actions to take or not take. I’m very happy where I work, but that’s not to say my judgement isn’t questioned, by parents and by other school staff. It’s especially difficult when a parent disagrees with my judgment call, a decision that is made with the best interest of their child in mind. The parents of my students do not have it easy. I know that first hand from raising Thomas. But there are times when my judgement call disturbs their day. And that I can’t help. Thankfully I’ve only met resistance with a scattered few parents. It’s not the norm. I’ve had a lot of pleasant interactions with parents who live tough lives. And they know I care about their child. Every now and then I’ll tell a parent about Thomas, that he is special needs, so they know when I say, “I get it, I understand” I really mean it.
I think back to when I even first applied for my job. I knew it would be special education and medically fragile students. I almost didn’t hit the submit your resume button. I hemmed and hawed a little. But to be honest I felt I was doing what God wanted me to do. That He was behind me, so I hit submit.
Little did I know what a ride this job would be. No two days are the same. And being busy one day means something totally different when I’m busy the next day. I’m thankful I get to work where I am. I was supposed to work in Manhattan and I was ok with that at the time. Who knew I’d be fortunate to work 15 minutes from my house. It’s all in God’s hands. It’s been in His hands from the start.