Can't shake the doldrums aka - child with chronic health issues

[speedmom4]

Hello Hive,

 

I am normally the kind of person that can find the positive in just about any situation. I'm not a "Pollyanna" but I tend to like to find what's good and focus on that instead of what isn't perfect. Lately I've had a really hard time finding joy and happiness. I'm not finding any kind of delight in little things that used to make me happy. 

 

Our third child, and older son, has cerebral palsy. He had a stroke at birth and was diagnosed at 6 months old. He is now 17 and such a blessing to our family. The right side of his body is affected and he has little to no use of his right hand. Amazingly, he has figured out a way to do almost everything. He is not intellectually disabled but he definitely has some social awkwardness. Unfortunately he also has epilepsy. In the past six months it has hit a new level of severity and we are in the process of testing to see if he's a candidate for brain surgery. He is heavily medicated right now and still has small seizures daily.

 

I have always been one to see all that he can do, all of his potential. But lately I feel so sad. My heart breaks for him. At our last neurologist appointment the doc explained to us that our son's left frontal, temporal, and parietal lobes are all dead tissue. I guess I've always known there was brain damage but the detail hit me in the gut in a way it hasn't since he was diagnosed. 

 

Recently a friend shared  a photo on Facebook of her son's college acceptances and I realized in that moment that my son is the same age as hers. I felt so very sad. My son is happy and he is not sad at all! He has lots of things he's passionate about. He loves his life and his family. It's all me. I'm the one struggling.

 

Anyone with advice? Anyone BTDT? Will I ever stop feeling sad? 

[moonsong]

Hugs I'm sorry. It is hard watching loved ones suffer with hardships. I think it is healthy to mourn what could have been or what is lost. I hope your son is able to get some help with his seizures.

[Arcadia]

A good friend has epilepsy and a hole in the heart. After his surgery for hole in the heart when he was 19, his medicine cocktail was much less. Having seen him take his medicine daily in high school and his frequent calls from hospital to me because he was bored there while hospitalized, I can understand the feeling of not being able to help.

 

My late cousin has down syndrome and there is grief over what could have been. Their church group as well as close friends were very supportive from the time he was born. My aunt and her husband did know before he was born from the amniocentesis results.

 

:grouphug:

[G5052]

Anyone with advice? Anyone BTDT? Will I ever stop feeling sad? 

 

No, according to my therapist. There will always be some sadness there. You have to be very proactive at self-care, but the reality is that you just plain have deep pain inside.

 

DH had significant spinal damage following a surgical infection 12 years ago, and now has dementia and is retired. He's not at all the person I married and is in a downward spiral that isn't going to end at all well. There isn't a day that his situation isn't hard on me in some way, and it deeply affects our teens.

 

Exercise, interacting with happy individuals, and serving others helps me keep it going. My teens do the same.

[Random]

I don't have much advice.  My 16 year-old niece is in a similar situation.  She probably won't ever lead an independent life.  We've all had to mourn, but no one as much as her mom (my sister). 

 

The one thing I always think of whenever my sister is really down is, how much of  a blessing her daughter is to me and to the people who know and love her.  My niece brings so much joy to our lives.  I think about how much we would take for granted or never notice or be thankful for if she wasn't in our lives and we didn't love her so  much.  It's much harder for my sister than for me, and I  know my sister carries a burden I can't really appreciate, but I tell my sister how thankful I am for the gift of my niece's life and what it has taught us.

 

I'm thankful your son is so happy.  That speaks really well of you.

 

I don't think we ever stop mourning.  I think that is part of grief...the knowledge that things will never be the way they were, or the way they were 'supposed to be.'

 

It sounds like you are doing amazingly!

 

Here's to brighter days for you.  :grouphug:

[Zoo Keeper]

:grouphug:  No real advice, just hugs and prayers for you.

[Crimson Wife]

:grouphug: :grouphug: :grouphug: :grouphug:

 

It is hard not to compare the SN child with typically developing ones but I try to keep my focus on my daughter's path along her own individual trajectory.

 

Going back to school myself also helped pull me out of the depression I had fallen into after the discovery of her hearing loss in 2015. It gave me concrete goals that I could focus on achieving. I cannot do anything about the genetic mutation that is destroying my DD's auditory system but I can learn how to help her and other kids with hearing loss improve their speech & language.

 

If further education or a career change doesn't interest you, there are other goals that you could choose. A friend of mine who is a fellow SN mom is training for a marathon. If that isn't your cuppa either, then maybe learning a new hobby.

[KungFuPanda]

I get it. I live there too. You try to be positive most of the time, but the reality of the diagnosis can pack a heck of a punch at the most random times. You just ride out the low moods the best you can. I have a 16-year-old with Duchenne's muscular dystrophy. His friends are doing college tours now. His sister is IN college. It's hard.

[Katy]

:grouphug: :grouphug: :grouphug:

[mominco]

:grouphug:  :grouphug:  :grouphug:

[happi duck]

(hugs)

[Minerva]

:grouphug:  :grouphug:  :grouphug:

 

 

[speedmom4]

I get it. I live there too. You try to be positive most of the time, but the reality of the diagnosis can pack a heck of a punch at the most random times. You just ride out the low moods the best you can. I have a 16-year-old with Duchenne's muscular dystrophy. His friends are doing college tours now. His sister is IN college. It's hard.

 

Yes! It really is the most random times! 

 

Our youngest is getting ready to start drivers ed and while on the one hand I'm so happy for him on the other my heart breaks because his brother will never do that. 

 

It helps to know we aren't alone. 

[speedmom4]

:grouphug: :grouphug: :grouphug: :grouphug:

 

It is hard not to compare the SN child with typically developing ones but I try to keep my focus on my daughter's path along her own individual trajectory.

 

Going back to school myself also helped pull me out of the depression I had fallen into after the discovery of her hearing loss in 2015. It gave me concrete goals that I could focus on achieving. I cannot do anything about the genetic mutation that is destroying my DD's auditory system but I can learn how to help her and other kids with hearing loss improve their speech & language.

 

If further education or a career change doesn't interest you, there are other goals that you could choose. A friend of mine who is a fellow SN mom is training for a marathon. If that isn't your cuppa either, then maybe learning a new hobby.

 

Thankfully I do have a few things I am interested in and am able to pursue a bit. Right now the testing for surgery is a very involved process that requires not just doctor visits and diagnostic tests but hospitalizations as well. It severely limits what I can or even want to do. He ended up having two very serious seizures right after Christmas that shook me to the core. I haven't been able to get those images out of my head. He hasn't been alone for a second since then. 

 

Thanks for the suggestions!

[speedmom4]

No, according to my therapist. There will always be some sadness there. You have to be very proactive at self-care, but the reality is that you just plain have deep pain inside.

 

DH had significant spinal damage following a surgical infection 12 years ago, and now has dementia and is retired. He's not at all the person I married and is in a downward spiral that isn't going to end at all well. There isn't a day that his situation isn't hard on me in some way, and it deeply affects our teens.

 

Exercise, interacting with happy individuals, and serving others helps me keep it going. My teens do the same.

 

I'm so sorry for what you are going through. Sounds like you are doing the best that you can given such difficult circumstances. 

 

Thank you for sharing!

[fraidycat]

:grouphug: :grouphug:

[Ali in OR]

I understand. I've been there to some extent. I think you're in a low, but I don't think it's a permanent place. My oldest dd has intractable seizures mostly controlled with meds. She doesn't talk or walk. She requires a lot of care. But she does love life and is basically a happy person. When I look back on her life, there were times that were much harder than what our baseline is now. Bad times with seizures are ALWAYS lows. She may have a run of several days with lots of seizures and I fall into a funk. And then she gets back to baseline and life is happy again. Her peers going through major milestones were usually lows too--confirmation in church, high school graduation, and I'm sure weddings will always hit me a bit because it's not in the cards for her (though I hope to enjoy all of those milestones with her sisters, so I'm not sad for me). I think if/when you get a handle on the seizures you'll find your regular happiness again. That's not to say you won't be happy if seizures continue to be an issue, but you may have to go through the whole grief process again while you adjust to a new normal. Hugs to you, and I pray you'll find something to help with the seizures.

[bethben]

I can totally empathize.  My son is also 17 and this month has been particularly hard medically.  My son has severe developmental delays (he's a toddler/baby in an adult body) and does have cerebral palsy also.  This month, we found out that the major bi-lateral hip surgery we thought was a one time deal has undone itself.  He is looking at major surgery again and possible hip replacement surgery at a young age.  It's a hard surgery.  A month in bed and then a month of just trying to get any muscle tone back.  It's a two person job and there's just me.  Then, going to get new AFOs, the orthotist told me that his right foot is getting to the point where it may not be able to be braced and therefore not be able to support his weight.  Our ability to take care of him is dependent on his ability to at least stand.  Our home is dependent upon his ability to stand.  Our car is dependent upon his ability to stand.  Without the standing part of his life, we need to build a home to accommodate hoyer lifts and roll in showers and get a wheelchair van.  That's MAJOR money that we don't have.  And the huge part of it is, I just want him to get a little break in life.  I wanted him to be done with major surgeries and he may not be.  He doesn't understand and I just want his life as he knows it to be happy without pain.  For a while he got really nervous every time he went to the doctors because we can't prepare him for surgery.  All he knows is that he went to sleep and woke up in pain.  How is he to know every time he goes to the doctors, he's not going to be in pain?  Even today, while I was stretching him, I could feel his muscles doing their spastic thing.  His muscles never rest.  It's been a hard month to see everything that is still so very wrong with him.

 

I remember realizing when he was a baby that his life would be this mixture of great joy and deep sorrow.  I didn't want to have to live with that constant mix. But here I am, 17 years later still living with the joy mixed with sorrow.  People tell me what a strong woman I am.  I don't want to be strong.  I'd rather have my biggest problem be that the dishwasher broke and flooded the kitchen kind of problem.  Not problems that affect every.area.of.my.life.  I love my child.  I hate his disability.  It steals from him.

 

 

[Lilaclady]

(((((Hugs))))))

[Crimson Wife]

 

  People tell me what a strong woman I am.  I don't want to be strong.  I'd rather have my biggest problem be that the dishwasher broke and flooded the kitchen kind of problem.  Not problems that affect every.area.of.my.life.  I love my child.  I hate his disability.  It steals from him.

 

:iagree:  :iagree:  :iagree:  :iagree: 

 

This is why I get so f****** pissed off at the people who claim "it's a difference, not a disability!" A difference is being a red-head or left-handed. Not a medical condition that significantly impacts my child's ability to function in her daily activities.

[J-rap]

Since my dh's stroke 6 years ago, I've been researching all I can about brains.  It took me two years before I had the courage to look at my dh's MRI images which I had on a CD at home.  1/5 of his amazing, brilliant brain was dead.  This was a horrible thing for me to face.

 

Since then, however, he has been involved in numerous studies all over the country where they are pushing other parts of his brain to take on the jobs of those missing parts.  It is absolutely incredible.  You can see in a series of MRI's how other, healthy parts are now becoming far, far denser and much more active as he relearns things and the rewiring continues.  They actually do the imaging as he is actively doing the skill he is relearning, and can see exactly which part of the brain is learning to take it over.  

 

There is so much potential in the brain!  Even damaged brains.  I'm sure it has to be one of the most amazing, powerful, untapped resources.  Scientists will be learning much more about it in the next decades.  We already know so much more than we did just ten years ago.  So have hope!!

 

Also, a family member is a doctor and his team has been working closely with an athlete who had to have part of her brain removed due to constant seizures.  It is a real success story, and her life has improved dramatically.  She is finally able to do things now that she never thought she'd be able to do again due to her constant seizures.  I believe her seizures are completely gone now.

 

Very best wishes to you and your son.

 

 

 

[Lizzie in Ma]

:grouphug: :grouphug: