|kpmomof7 [ PM ]01/18/2012 15:40||Registered: 4 years ago
You asked: “I was wondering, though, what Charlie’s input on this is? You said the decision rests on your shoulders. Is he too overwhelmed and grieving to help you decide?”
Charley’s input is minimal. He has never been actively involved in making decisions for Joshua (or any of the other kids) when it comes to medical stuff out of his own personal choice. He cops out by saying, “You know more than me about this stuff, so whatever you think is best, I think that’s what we should do.” He has not helped in making any decisions about Joshua. He won’t do it & no amount of talking has been able to change his position. When I was in the hospital & was having life-or-death questions about Joshua’s care thrown at me, I excused myself to call my husband so I could get his input & he told me, “I don’t know. I can’t think about it.” That wasn’t very helpful when I had a room full of doctors waiting to hear what we wanted to do.
So… since he has essentially checked out, I have been forced to make decisions on my own, and having gotten into the habit of doing so for the past 20 years of caring for our children (because he refuses to help with any of the medical/therapy stuff associated with their conditions), it hasn’t been a new situation; it’s just sad. With the stakes so much higher now, though, it’s a lot harder to make the decisions alone, especially since I worry sometimes that someday he is going to resent decisions I’ve made and/or regret not being more involved.
Our marriage is in shambles. After everything we’ve gotten through ~ Megan’s precocious puberty, Adam’s nasal cyst that eroded his septum & led to 3 surgeries, David’s autism diagnosis & subsequent years of therapy & intense treatment (ABA), Emily’s Asperger diagnosis & therapy, Sarah’s developmental regression, therapy & subsequent brain surgery for Chiari, hurricanes wrecking our home, Isaac’s autism & apraxia diagnosis & therapy, David & Sarah’s same-day brain & spinal cord surgeries, David’s ADHD diagnosis, Adam’s “emerging Marfan’s” & Asperger diagnosis, Megan’s PCOS diagnosis, EVERYTHING involved with Joshua (29 surgeries, wheelchairs, AFOs, cathing, g-tube, TPN, multiple hospitalizations & tests, etc), and adopting 2 children with Down syndrome from Ukraine & addressing *their* multiple medical issues ~ we lost “us”. Chronic stress takes its toll on more than the physical body & psychological state of mind, I guess.
We’ve talked about divorcing. We’ve talked about trying to fix our marriage. But when we try to talk about Joshua, what I get is, “I think we should do what is best for Joshua.” When I ask him what he thinks that is, he answers, “I don’t know.”
The reason I believe the decision to either do more surgery or let Joshua go is going to rest on my shoulders alone is because in that list I just put up above ~ the kids’ diagnoses & stuff ~ I was the one who dealt with all of that alone. I have received almost zero help from Charley in making decisions about Joshua’s medical care & he hasn’t been involved in making the decisions about Joshua’s cremation & memorial service because he refuses to be a part of the discussion, so I’ve done it. I always have. And for the most part, I don’t have regrets with how I’ve managed my children’s medical needs & the treatment of those needs. But choosing when to stop pursuing treatment (in this case, brain surgeries) & to let my child die, instead, is one of those decisions that I would prefer to not have to make alone. That’s why I asked others, generically, in the journal entry prior to this most-recent one, how *they* make tough decisions (what process do they use to come to a decision). I am not asking anyone to tell me what they would do if Joshua were their son because there is no way anyone else can know. Unless you (not you personally; generic “you”) have been in the position of making this kind of decision, you can’t truly know what you would do & because I realize that, I won’t ask others, “What would you do?”. When the time comes that Joshua needs that decision made for him, I will try once more to engage his father in a discussion about it. If Charley again refuses to be a part of the decision, I will pray & seek counsel from our pediatrician & neurosurgeon & two trusted friends who have helped me come to decisions in the past, and then I will choose what path to walk with Joshua. I know I should care deeply what my husband wants to do, but after almost 21 years of being put in the position of having to take care of the things that he doesn’t want to deal with (ie: all of the medical issues, schooling & developmental guidance for our children) because he “checks out”, I’ve almost given up on the idea of things ever being any different. What I would prefer is for us to sit down and have heart-to-heart discussions about Joshua & his needs & our feelings & for us to come to a decision together about what WE feel is in our son’s best interest. In the absence of that, though, I still have a very sick child to make decisions for & if I have to, I’ll make those decisions alone. I am not choosing to exclude Charley; he is choosing to exclude himself ~ I want that to be very clear.
So… there ya go. I know the argument could be made that he’s so overwhelmed with grief that he can’t help make decisions, but since this has been a pattern of behavior for almost 21 years, I don’t buy that argument, even though it may actually be true with regards to Joshua’s situation. Also, the bitchy part of me says, “Well, so what if he’s overwhelmed with grief? So am I, yet I am forced to keep functioning because he refuses to! How is that okay? Why does he get to cop out of everything and leave me to deal with it all?” So… yeah… lots of resentment & frustration & the like. I know. And I don’t want to come across like a sanctimonious woman who thinks she’s done nothing wrong & is blaming everything on her husband. I know it takes two to build AND to destroy a marriage. I know that I’m not perfect in our relationship, either. But counseling isn’t an option right now ~ we have no money to throw at it & his work schedule would make it almost impossible. Besides, truth be known, I have no emotional energy to care about my marriage right now. I just don’t. If he stays, if he leaves, oh well. I have reached the point that it doesn’t matter to me anymore. After Joshua dies, maybe I’ll eventually care again, but right now, I just don’t. I don’t want to divorce Charley, but I also can’t really imagine things ever genuinely changing in ways that would be necessary to keep us together.
Maybe that’s a lot more information than you were looking for, but I felt a complete answer was more honest than just agreeing with you that yeah, he’s too grief-stricken to contribute to decision-making.
|kpmomof7 [ PM ] Well, no, it’s none of your business, but I’ll answer your questions because I am quite sure you’re not the only who has wondered. (m)01/26/2012 14:07||Registered: 4 years ago
Regarding discussing the division of child care and duties prior to marriage, I got pregnant with Megan out-of-wedlock and so there were no discussions during a “dating/courtship” period. Charley & I didn’t date. We were friends who occasionally had sex and when I got pregnant, he told my parents we were getting married without ever discussing it with me first. I went along with it because at the time, I cared deeply about having my parents’ approval & I didn’t want to be a single mom.
Yes, Charley and I have talked a lot about how I need him to help. I never said he doesn’t help with things like dishes or laundry. I said that child care is my job and it is. He does help out with some things; just not child-rearing duties.
As for this: “Kate, I have been wanting to ask you this for a while, especially after your post the other day about the current state of your marriage. You can get angry with me or tell me it’s none of my business, because it isn’t, but I have been wondering: When you have many children with health issues and special needs and a husband that doesn’t help, what motivated/inspired you to have more children, and especially to adopt your 2 Down syndrome babies?”
I had 5 children and was pregnant with #6 before the first child EVER got diagnosed with ANYTHING. My first special-needs child was David, who was diagnosed with autism as a direct result of some vaccinations he had received that screwed him up. I didn’t think it would be a problem to have another child since, at that time, no one thought autism had a genetic component, so I didn’t think any future children would be at-risk. After Isaac was born, I realized something was “off” about Emily & had her evaluated and she was diagnosed with Asperger’s. Then Sarah was diagnosed with chiari. Then David had it, too, but again, no one thought it was a genetic “thing” and I was assured that whatever environmental glitch had caused Sarah’s chiari was also responsible for David’s since they’re twins and were in-utero together & had therefore been exposed to the same thing. They had their surgeries and were fine. I had Joshua because even though we’d been through the twins having brain and spinal cord surgeries and some kids diagnosed on the autism spectrum, it really was not that big of a deal. Maybe it sounds like it was too much, but it wasn’t. It still isn’t. I’m used to my autistic kids and it didn’t seem like a big deal to have another child. Obviously, Joshua being born with RANDOM chromosome mutations that did NOT come from either me or his father was something completely out of my control. That could have happened to ANYONE and wasn’t my “fault”.
I chose to have a lot of children because I wanted them. Period. Just because they have issues doesn’t make me want them less. Yes, Joshua’s issues are overwhelming, but it isn’t like we KNEW that there was any chance of having a child with his set of birth defects, so it wasn’t a conscious choice to over-burden my family by getting pregnant with this particular child.
As for the adoption of Bethany & Hannah, God orchestrated that 100%. We merely obeyed his call & direction to “Go!” Why did He give us children who not only have Down syndrome, but other medical issues, as well? Only He knows, but honestly, when Megan and I flat-out asked God ~ and not in a nice way, either ~ “WHY did You have us adopt THESE girls?” the answer we heard back was, “Because you would.” Considering no one had ever made an inquiry about either Bethany or Hannah before Charley & I did, I wasn’t surprised by God’s answer. Honestly, the fact that Charley was on-board and willing to adopt and convinced that God wanted us to do it was enough “proof” for me that we were supposed to. The fact that God opened every single door and gave us signs of confirmation at each step was huge, also.
If Joshua were not dying, I would not feel overwhelmed by Bethany & Hannah’s “contribution” in terms of special needs to our family. Seriously. It wouldn’t be a big deal. I love medicine & I am actually really good at taking care of kids with medical problems. My other children are not fazed by special needs and don’t think the extra work involved in taking care of a sibling to be the end of the world ~ they value their siblings regardless of their abilities (or disabilities). BUT, having a dying child changes everything. It affects every single person in this family & every single aspect of our lives. It’s emotionally devastating. It’s physically taxing. And financially draining. And, because of that, I have very little reserves for anything else that comes along or crops up. Sooooo…. things like having a husband who has decided to “check out” because he can’t handle any of this makes my job a lot harder. And yes, I vent about it because it IS hard and it DOES hurt and the whole situation SUCKS!
If Joshua were not dying, then I would be fine dealing with taking care of the kids on my own like I always have. I don’t really care that Charley isn’t an actively-involved parent. Yes, I feel sad for my kids that he’s not, but ultimately, he is going to be the one who regrets not being involved and that’s not my burden to carry. It is only because Joshua IS dying & I have been forced to make all of the very-difficult decisions on my own that I am feeling over-taxed.
Hope that explains well enough for you. I know people don’t understand why a family with lots of special-needs kids would choose to add more special needs kids to the mix, but since you do see it happening a lot, maybe there’s a reason…. maybe it’s the families who have kids with special needs already that recognize the value of less-than-perfect children and are willing to deal with the issues, so God continues to bless those families with special children. I don’t really know. I guess it could be said that some families are walking genetic cesspools and should not procreate, but once the children are already here, there’s really not much that can be done to change it. And, like I said, I had 6 kids before I realized several of them had any kind of special need, and once Joshua was born, I chose to not get pregnant again because I recognized that I WAS one of those walking genetic cesspools and I didn’t want to keep birthing children with serious problems. God apparently decided that that was the wrong decision, so He had us adopt a few, instead! LOLkpmomof7 [ PM ]