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We do have a mother's helper that comes one afternoon a week. She babysits while I take DD to OT (down the road). I can run errands during OT. Then I come home & pay bills, planning, prepping, etc while she plays with kids & does light cleaning. I would like for her to come another day a week but VT is taking up a lot of our funds right now. We cut back on her time here bc of that.

 

The VT is what is so far away. OT is in town. I think she would probably get the same amt of OT at PS. The VT would be winding down by the time school starts in Aug.

 

If the VT will be winding down, then I would definitely try to up the hours of the mother's helper as soon as you can.

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DH won't even talk to our pastor-who he loves & has a great relationship with. Last year I told our pastor about some of our struggles & he was shocked. DH seems to have it together at church & work. Pastor took DH to lunch & DH played it down I think. Nothing else ever came of it. Pastor probably thinks I was crazy or hormonal. My MIL & all my family sees it too though.

 

I have tried every angle I can think of to get DH to wake up to reality. It's like talking to a brick wall. And I always walk away wondering if it really is all my fault.

Maybe it's just a man thing to blow off women?  It was a psych who did that to me, and the next psych diagnosed ds with ASD.  In other words, it wasn't my fault.  At least you know you've got SOMEONE (your child's medical providers?) who sees the truth and is giving you objective, accurate information.  As you say, a pastor can only help where the person opens up and is honest.  They can't see through into your soul or make you talk...

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If I were to bet, I would say your DH is suffering from depression.  He can keep it together in public but he is entertaining an negative spiral of thoughts on the inside. Depression sometimes makes you want to find something outside of yourself to blame for everything.  I know you can't make him get help, but I hope he does at some point.  :grouphug:

Wow, I'm not really intuitive on these things to know for the op, but if that's the case that would be a challenge.  I sometimes thing even just the immense strain, you know like losing their fathers, realizing life is HARD and not some cakewalk, that a lot falls to them (providing for all these kids, etc.) must be challenging.  It's sort of like us when we realize our homeschooling is of necessity and no longer just romantic.  We all hit that wall and have to come to the other side.  Maybe men do the same thing as they mature into this?  Dunno.

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I may be wrong, but I think depression in both parents is very common when a child faces a serious health concern or disability.  Not being able to help your child and make them better is just devastating.  The parent has to work through the stages of grief while also helping their spouse and dealing with the day to day needs of the child.  KWIM? 

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I don't have any magical answers, but I do understand.  I only have 3 kids, but we have similar issues - my DS is gifted and has Dysgraphia - both of my daughters have cleft lip and palates.  Each week, we have several speech therapy appointments for younger DD, counseling and orthodontics for my older DD, surgeries coming up for both girls.  It's never-ending.

 

We are pretty relaxed homeschooling-wise.  We do what we can, but sometimes, the medical stuff has to take priority.

 

Hang in there!  :grouphug:

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I sometimes wonder if men and women's experiences in grieving learning challenges are different because our day-to-day experiences are different.  My dh works long hours, and his interactions with our children are different than mine. One of the *best* things that happened in our marriage has been our serious health challenges. Sounds bizarre, I know.....but when I had to be away for weeks in antepartum and then NICU with our youngest.....dh HAD to step in and live the day-to-day.  All of that wishful thinking and denial got ground away when dh began to experience the same things I was day after day.  My husband never doubted my effectiveness as a teacher, but having to sit down with the planner and books and take the dc through the school day (& sometimes FaceTime me to explain things) helped dh understand all that I was doing, and where that was going.

 

I will also add that in hanging out with survivors of BTs, there is a real grieving process when you realize that your child survived, but at a price. Surgery, radiation, and chemo all take a horrible toll. You are grateful that your child survived, terrified that the cancer will come back, and still taking it all in that the kid before you is not the kid you had pre-cancer.  I've noticed anecdotally that a lot more men tends toward a long time in the denial department with the cognitive and emotional changes their kid has experienced.

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OP, what is your DD's long term prognosis? Is the tumor benign? Can the docs even say?

It isn't benign. It's low grade though. She was dx 5 yrs ago. At some point there was rapid growth. It is infiltrative type-not a mass. And there is a lot of it. Covers about 30% of brain. Long term prognosis-no clue really. Right now I would say it's good. But it could begin to grow again & she would face radiation. Oncologist said that she would not live to be an old lady but that she would graduate high school. I really don't know what her future will look like.

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I sometimes wonder if men and women's experiences in grieving learning challenges are different because our day-to-day experiences are different. My dh works long hours, and his interactions with our children are different than mine. One of the *best* things that happened in our marriage has been our serious health challenges. Sounds bizarre, I know.....but when I had to be away for weeks in antepartum and then NICU with our youngest.....dh HAD to step in and live the day-to-day. All of that wishful thinking and denial got ground away when dh began to experience the same things I was day after day. My husband never doubted my effectiveness as a teacher, but having to sit down with the planner and books and take the dc through the school day (& sometimes FaceTime me to explain things) helped dh understand all that I was doing, and where that was going.

 

I will also add that in hanging out with survivors of BTs, there is a real grieving process when you realize that your child survived, but at a price. Surgery, radiation, and chemo all take a horrible toll. You are grateful that your child survived, terrified that the cancer will come back, and still taking it all in that the kid before you is not the kid you had pre-cancer. I've noticed anecdotally that a lot more men tends toward a long time in the denial department with the cognitive and emotional changes their kid has experienced.

It's quite a roller coaster. And traumatic. DH & I didn't grieve in the same way which took its toll the first year after she was diagnosed. We were able to move on from that.

 

Sometimes I wish he would walk a mile in my shoes. And I sometimes wish I could see through his eyes. It can't be easy to be him.

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I may be wrong, but I think depression in both parents is very common when a child faces a serious health concern or disability. Not being able to help your child and make them better is just devastating. The parent has to work through the stages of grief while also helping their spouse and dealing with the day to day needs of the child. KWIM?

It is very stressful so I can imagine that depression could be more prominent. I know the divorce rate is very high. When we went through orientation at our hospital (St Jude) we were told that their divorce rate is 90%.

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It isn't benign. It's low grade though. She was dx 5 yrs ago. At some point there was rapid growth. It is infiltrative type-not a mass. And there is a lot of it. Covers about 30% of brain. Long term prognosis-no clue really. Right now I would say it's good. But it could begin to grow again & she would face radiation. Oncologist said that she would not live to be an old lady but that she would graduate high school. I really don't know what her future will look like.

:grouphug:  :grouphug:  :grouphug:

 

FWIW, my niece has a brain tumor.  It is also infiltrative, not a mass, completely inoperable and she has probably had it since before birth.  She was diagnosed at 7.  Doctors told her family she had 6 months to live.  She is now 19, graduated High School and has a part time job.  Does it affect her life?  Daily.  Did it cause tremendous strain between her parents?  Yes.  But they are still together, have a much stronger marriage now and she is alive and has a life.  It just took a long time to get there.

 

You are in a challenging and painful place.  The issues are pulling at you with no easy path to follow.  But as OhE said, there are blessings, too.  And hope.  Right or wrong, your family needs you to be the glue.  That means you have to do something to help you, first, whatever that something may be.

 

Hugs and blessings.   :grouphug:

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Yes! DH isn't happy that I put DD in 1at grade CLE though she is 3rd grade. He doesn't understand that it is giving her confidence, laying a very solid foundation, shoring up shaky skills, etc. He just can't get behind it. When I say-she did great in math today-he says well she should be doing great it's 1st grade math. I am trying to explain the long term but he doesn't get it. Which makes me doubt the path we are on. But he isn't the one who spends hours reading, researching, planning, & then teaching.

 

I wonder, would having her do some standardized tests help, to show where she really is? Something you give at home? She may well test out as average for grade level. Of course, if testing lower than that would upset him more it wouldn't be worth the risk.

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He wants her to be normal so badly that he can't admit that it's the tumor. He downplays all of her issues so much that I sometimes feel crazy.

 

And she would have missed a lot of days over the years. And who knows what the future holds. Med changes are the worst. If she was in school when those have happened in the past there would be no way she could keep pace.

 

He wants me to work bc I have the potential to earn a very nice salary. He wants to 'get ahead' although we have a nice amt of $$ in savings. We choose to live frugally so we can pay cash for things. He wants nicer house on lots of land & newer cars & be debt free. He worries about money constantly. i guess he thinks that if I worked his money worries would be over. But there are so many expenses related to working outside the home & the fact that we have 5 kids (one of which who has medical issues) means I won't be able to earn as much as he thinks.

If money is the biggest issue I think when you can find the time and energy you need to do a table of what childcare, education, work clothing and work expenses will cost. Allow money for extra take away, convenience meals and a cleaner. It may change his opinion. Mine likes the idea of a stay at home parent anyway but he was more convinced after I showed him what private school fees and childcare cost without mentioning uniform expenses. I guess sometimes it's hard to realise how much you might be losing by earning those extra $$$.

 

I love the fact that women have so many options but I hate that it is so often expected that both parents work no matter what kind of birth they have, how many kids, what other life issues. How much can one human really handle?

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Romans 8:26--And the Holy Spirit helps us in our weakness. For example, we don't know what God wants us to pray for. But the Holy Spirit prays for us with groanings that cannot be expressed in words. (New Living Translation)

 

I think it's ok to be groaning and not know what to do. It's a good position to be in, because then *God* can provide for you. And really, I've been amazed by the helpful, kind people in our district. It might be some of them could be your blessing for a year. Or maybe going through the IEP process would help you sort out what they could provide for your kids and for which kids that *could* be a good choice and for which it wouldn't.

 

Don't be afraid. Make hard decisions, own 'em, and don't be afraid. I know catholics who put their kids in baptist christian schools, and this sorta blows my mind because if there was ANYONE out to convert a catholic and tell them their doctrine was errant, it would be an IFB baptist, kwim? And yet somehow those catholics have enough faith in their teaching, their God, etc. to put them into an antagonistic setting and trust it to pan out. They just step up the teaching at home. I don't know what you should do. I'm just saying I'm inspired by these people who aren't AFRAID but make the right decision and follow it through.

 

I was raised with a lot of fear techniques. Preachers would tell us we were gonna die and stand before God and watch this long HOME MOVIE of everything we had done and REGRET, REGRET, REGRET things. Then I got to Bible college, started taking theology classes, and realizing it's not like that. God doesn't want us to live a life of fear and regrets and He's not holding mistakes and failings over our heads. We're going to be weak, mess up, make decisions we might have done differently with more hindsite, etc., and it's OK. It's all in the providence of God, even the things that are very confusing and not going well, and it's OK.

 

Or maybe I'm just the only one that took their comments so b&w and literally? :lol: But seriously, I think that's why we're seeing such a shift in churches and the type of theology that's popular, because people are tired of being controlled through FEAR, fear that if they don't dress a certain way, perform a certain way, do everything a certain way, our kids will turn out wrong, God will be displeased with us, and so on. All He ever wanted was for us to serve with integrity, love mercy, and walk humbly. But somehow that mercy never applies to our own failings, never gives us permission to be *fearless* and go forward. That's what Heidi whatever her name is was talking about at the convention, being FEARLESS. :)

You aren't the only one who took it so black and white literally. It's a hard mindset to grow out of.

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It isn't benign. It's low grade though. She was dx 5 yrs ago. At some point there was rapid growth. It is infiltrative type-not a mass. And there is a lot of it. Covers about 30% of brain. Long term prognosis-no clue really. Right now I would say it's good. But it could begin to grow again & she would face radiation. Oncologist said that she would not live to be an old lady but that she would graduate high school. I really don't know what her future will look like.

I didn't read to the end of the thread before replying... Now I've seen this I just want to take back anything I've said and just give you a hug and pray. Do whatever it takes to get you all through this together.

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One thing to look into is whether your child with the tumor qualifies for any sort of program that offers respite and/or in-home support services. My little one did not previously qualify for IHSS because she was considered too high-functioning but I was told recently by her case manager that with the hearing loss in addition to the autism she'd probably now get approved. Applying for IHSS is now on my "to do" list.

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You all have been very helpful. Sorry I was so sensitive earlier in the thread.

 

You have every right to be sensitive and I don't take any offense.

 

I cannot imagine what it must be like with a child who is facing a health issue of that magnitude. Major hugs to your family. Your DH and you are under a lot of stress and I wish you the best.

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