Coping when you have a child who is dealing with chronic illness

[plain jane]

I have a child who must deal with having a chronic illness. I know this illness is not about me, and I feel guilty even venting here about it, but the truth of the matter is, it does affect me. It tugs at heart strings I never knew I had, it pushes frustration buttons I wish I had not discovered and the truth of the matter is, I would not wish the feelings of helplessness I experience on a daily basis on anyone. :(

 

Some months this child spends more days in bed than out of it. Sometimes we can't leave the house for days because they're too ill. This child suffers; the whole family does. It brings a whole new dimension to our homeschooling- I know it's the right thing because how would I be able to send this little person to school, but at the same time, when we miss so many days of homeschooling, I do start feeling :willy_nilly:. But it's not that child's fault and then I feel soooo guilty for feeling frustrated.

 

Ugh. It's just so darn hard and nobody I know IRL understands. They're the fortunate ones who don't have to deal with this. And I feel so alone. Dh understands but in his own way, he's come to terms with this. It doesn't devastate him like it does me; his heart doesn't grieve so like mine does. He doesn't shed the tears I do.

 

I'm hoping somebody here will understand. Again, I know this isn't about *me*. I'm not trying to make it about me- but as "Mommy" it does affect me. I'm sorry if this post sounds so selfish. I guess as a mom it's just so hard for me. I never dreamed I'd have to live each day with so much stress in my life- didn't really think I'd have that strength to go on. :001_huh: I know there are mamas here dealing with so much more and I'm in awe of all of you. :grouphug: You're my heroes. :)

 

And then there are the good days. Sigh. If only we had more of those around here. :(

 

What's a mama to do?:crying:

[kwickimom]

:grouphug: my kids are healthy, but it kills me when they have the stomach flu or a fever, so I CANNOT imagine what you are going through. My heart breaks just reading your post.

 

There is NOTHING wrong with any of your feelings, they are feelings. You have one of the worst stresses a mother could have IMO. Do not feel guilty because it does affect the entire family.

 

I hope someone of experience chimes in. I am SO sorry you have to go through this. I will pray that you and your family can find some kind of way to deal with the situation. Just make sure you are taking time off for you, and taking care of you. If mom goes down, the whole ship goes too.

 

:grouphug::grouphug::grouphug:

[plain jane]

:grouphug: my kids are healthy, but it kills me when they have the stomach flu or a fever, so I CANNOT imagine what you are going through. My heart breaks just reading your post.

 

There is NOTHING wrong with any of your feelings, they are feelings. You have one of the worst stresses a mother could have IMO. Do not feel guilty because it does affect the entire family.

 

I hope someone of experience chimes in. I am SO sorry you have to go through this. I will pray that you and your family can find some kind of way to deal with the situation. Just make sure you are taking time off for you, and taking care of you. If mom goes down, the whole ship goes too.

 

:grouphug::grouphug::grouphug:

 

Unfortunately we're getting to the part I bolded. :( I think I'm losing what little is left of my sanity.

 

Thanks for your kind words. I'm feeling really lost lately.

[unsinkable]

I have a child who must deal with having a chronic illness. I know this illness is not about me, and I feel guilty even venting here about it, but the truth of the matter is, it does affect me. It tugs at heart strings I never knew I had, it pushes frustration buttons I wish I had not discovered and the truth of the matter is, I would not wish the feelings of helplessness I experience on a daily basis on anyone. :(

 

Some months this child spends more days in bed than out of it. Sometimes we can't leave the house for days because they're too ill. This child suffers; the whole family does. It brings a whole new dimension to our homeschooling- I know it's the right thing because how would I be able to send this little person to school, but at the same time, when we miss so many days of homeschooling, I do start feeling :willy_nilly:. But it's not that child's fault and then I feel soooo guilty for feeling frustrated.

 

Ugh. It's just so darn hard and nobody I know IRL understands. They're the fortunate ones who don't have to deal with this. And I feel so alone. Dh understands but in his own way, he's come to terms with this. It doesn't devastate him like it does me; his heart doesn't grieve so like mine does. He doesn't shed the tears I do.

 

I'm hoping somebody here will understand. Again, I know this isn't about *me*. I'm not trying to make it about me- but as "Mommy" it does affect me. I'm sorry if this post sounds so selfish. I guess as a mom it's just so hard for me. I never dreamed I'd have to live each day with so much stress in my life- didn't really think I'd have that strength to go on. :001_huh: I know there are mamas here dealing with so much more and I'm in awe of all of you. :grouphug: You're my heroes. :)

 

And then there are the good days. Sigh. If only we had more of those around here. :(

 

What's a mama to do?:crying:

 

:grouphug:

 

I'm sorry, Jane! My DD has epilepsy so I know a bit about what you're talking about. It is stressful. We have good days and bad days here. And there is no one in IRL who understands.

[kwickimom]

Unfortunately we're getting to the part I bolded. :( I think I'm losing what little is left of my sanity.

 

Thanks for your kind words. I'm feeling really lost lately.

 

 

Is there anyway you can get a break? Even if DH could handle one day or weekend? support group?I know easier said than done, but that has got to be the best thing for you. See- these are the times I wish I lived by everyone or could travel around and help out. I would easily help you with your kids and HS'ing.

[Dana]

You're not selfish at all. You're grieving for what your child is suffering and for the loss of what you had hoped for your child.

 

:grouphug:

 

I was at the mall with my son yesterday.

We walked through the food court and I was very sad. I would have loved to take him to lunch - pick out anything, sit and eat together as a treat. We can't and we probably never will be able to. He is allergic to dairy and that eliminates most places to eat out. He had an anaphlactic reaction to cashews and the recent skin tests show the dairy allergy is still very very very strong.

 

I have it easy. As long as ds doesn't eat something unsafe, he should be fine. And yet, walking out of the food court yesterday, even knowing how lucky we are and how many people have it worse, I was angry for what I don't get to do with ds and angry at the people who are able to sit with their children at a restaurant and who can do that without knowing how lucky they are to even have the option. We had to go home and cook.

 

Give yourself permission to feel sad, angry, and yes, selfish. It's okay. You're not a bad mother for feeling cranky at your child. Some nights ds has been in bed and is sniffly with his allergies and I just am thinking "Would you shut up already!?" It's okay. I'm still there with the hug, with the medication when needed, and it's okay that I just want some peace. If you spend time beating yourself up for your feelings, you have even less energy to do what's needed for your child and your family.

 

:grouphug:

[elegantlion]

(((Jane))):grouphug:

[mims]

I have a child who must deal with having a chronic illness. I know this illness is not about me, and I feel guilty even venting here about it, but the truth of the matter is, it does affect me.

 

 

My daughter has had health problems for a long time that may never have a solution. I have found great encouragement from reading Joni Erickson Tada's most recent book. She is so real about thinking she had come to terms with being a quadriplegic and now having to come to terms with chronic pain all over again. You might try that or other ones by her.

[plain jane]

You're not selfish at all. You're grieving for what your child is suffering and for the loss of what you had hoped for your child.

 

:grouphug:

 

I was at the mall with my son yesterday.

We walked through the food court and I was very sad. I would have loved to take him to lunch - pick out anything, sit and eat together as a treat. We can't and we probably never will be able to. He is allergic to dairy and that eliminates most places to eat out. He had an anaphlactic reaction to cashews and the recent skin tests show the dairy allergy is still very very very strong.

 

I have it easy. As long as ds doesn't eat something unsafe, he should be fine. And yet, walking out of the food court yesterday, even knowing how lucky we are and how many people have it worse, I was angry for what I don't get to do with ds and angry at the people who are able to sit with their children at a restaurant and who can do that without knowing how lucky they are to even have the option. We had to go home and cook.

 

Give yourself permission to feel sad, angry, and yes, selfish. It's okay. You're not a bad mother for feeling cranky at your child. Some nights ds has been in bed and is sniffly with his allergies and I just am thinking "Would you shut up already!?" It's okay. I'm still there with the hug, with the medication when needed, and it's okay that I just want some peace. If you spend time beating yourself up for your feelings, you have even less energy to do what's needed for your child and your family.

 

:grouphug:

 

:grouphug: to you. I understand. I posted the other day about all the food allergies and intolerances in our family. We can't eat out. It's just so darn difficult and risks are simply too high. I can't take most of my kids out for ice cream or even buy them a chocolate bar. A "treat" is no longer a stick of gum or a trip out for a sundae. It's a toy or a book, which of course, costs more. :tongue_smilie:

 

In some ways it's liberating because we don't "waste" our money on eating out :rolleyes: but it's also very sad. A nice meal in a restaurant will never be a reality for our family and I feel bad for the kids. They used to love the odd time when we did eat out.

 

Of course, with all the food stuff going on, we don't *have* the money to eat out.:tongue_smilie: The few items of gluten free baking I buy (some muffins, bread to make my life a little more sane) and all the other changes I've had to make, cost so much. We're blessed dh has a good job. I shouldn't complain. But oh, to make a few boxes of good 'ole Kraft mac & cheese for everyone and call it a "meal"... that would be so therapeutic some days. :lol:

[Celia]

I have a child who must deal with having a chronic illness. I know this illness is not about me, and I feel guilty even venting here about it, but the truth of the matter is, it does affect me. It tugs at heart strings I never knew I had, it pushes frustration buttons I wish I had not discovered and the truth of the matter is, I would not wish the feelings of helplessness I experience on a daily basis on anyone. :(

 

Some months this child spends more days in bed than out of it. Sometimes we can't leave the house for days because they're too ill. This child suffers; the whole family does. It brings a whole new dimension to our homeschooling- I know it's the right thing because how would I be able to send this little person to school, but at the same time, when we miss so many days of homeschooling, I do start feeling :willy_nilly:. But it's not that child's fault and then I feel soooo guilty for feeling frustrated.

 

Ugh. It's just so darn hard and nobody I know IRL understands. They're the fortunate ones who don't have to deal with this. And I feel so alone. Dh understands but in his own way, he's come to terms with this. It doesn't devastate him like it does me; his heart doesn't grieve so like mine does. He doesn't shed the tears I do.

 

I'm hoping somebody here will understand. Again, I know this isn't about *me*. I'm not trying to make it about me- but as "Mommy" it does affect me. I'm sorry if this post sounds so selfish. I guess as a mom it's just so hard for me. I never dreamed I'd have to live each day with so much stress in my life- didn't really think I'd have that strength to go on. :001_huh: I know there are mamas here dealing with so much more and I'm in awe of all of you. :grouphug: You're my heroes. :)

 

And then there are the good days. Sigh. If only we had more of those around here. :(

 

What's a mama to do?:crying:

 

Your post didn't sound selfish at all. I cannot imagine being in your shoes. I have two hs'ing friends who each have 1 of their 4 children with Lyme disease. My, how those children suffer, and the rest of the family right along with them. But other than the sick children, the moms suffer the most. Both in heartwrenching grief watching their children suffer and being unable to alieviate their pain, and also in trying to give the rest of the family some degree of normalcy. You wouldn't blame your child for feeling devastatingly upset at times for having a chronic illness, and you shouldn't blame yourself for having difficulty with it either. Your heart is soft towards your child, and so it should be. It means you're a good mom. And frustration is common to all of us, and I have no doubt that you're doing better than many would if put in your situation.

 

I wish I had some advice for you. Mostly, I wish I could give you some help! As far as hs'ing goes, can you find stuff that's as independant as possible for the other kids so they can keep going? For your ill one, don't stress that he's not able to do as much as you wish. Learning doesn't happen when one is in pain, and there's nothing you can do about that.

 

Hugs to you and your family. I'm so sorry you have so much to deal with. :grouphug:

[Dana]

Of course, with all the food stuff going on, we don't *have* the money to eat out.:tongue_smilie: The few items of gluten free baking I buy (some muffins, bread to make my life a little more sane) and all the other changes I've had to make, cost so much. We're blessed dh has a good job. I shouldn't complain. But oh, to make a few boxes of good 'ole Kraft mac & cheese for everyone and call it a "meal"... that would be so therapeutic some days. :lol:

 

I'm thrilled that Enjoy Life makes chocolate chips and chocolate bars that my son can eat. He didn't have chocolate until he was over 5 years old. I also remember when everyone was complaining about food prices a couple years ago and "the price of milk!" I was at the store and compared the price of a gallon of milk to a half gallon of soy milk. Yup... I'd be thrilled to pay the price of milk. :glare:

 

But then, I'm very grateful we don't have a gluten allergy :) Dairy is tough enough!

[Whereneverever]

:grouphug:

[plain jane]

I'm thrilled that Enjoy Life makes chocolate chips and chocolate bars that my son can eat. He didn't have chocolate until he was over 5 years old. I also remember when everyone was complaining about food prices a couple years ago and "the price of milk!" I was at the store and compared the price of a gallon of milk to a half gallon of soy milk. Yup... I'd be thrilled to pay the price of milk. :glare:

 

But then, I'm very grateful we don't have a gluten allergy :) Dairy is tough enough!

 

We can't have soy milk either here so it's almond milk. Ack. That stuff makes dairy seem so cheap. Most of the time, if I find a cereal my kids can have (never the same for all) they have it with water.

[JFSinIL]

You are not selfish at all. You were, and are, your own person in addition to be a Mom. While your own hopes and dreams for your child's life are strongly affected or changed due to the child's chronic illness - so is YOUR life. What - because you are a mom of a child with an illness or disability suddenly that makes you a saint and not allowed to feel bad how your life turned out? Sometimes you just have to go hide in the bathroom and bawl your eyes out!

Yes - "Welcome to Holland" and all that "God only picks the strongest parents for his 'special' kids" stuff - platitudes from folks who just don't get it - or get it, and are glad they can walk away from it! And don't listen to anyone who tries to tell you how much worse off someone else is - this is not a competition, and the problems of someone else will not lessen yours.

 

Mom of a 19-yr-old with a seizure disorder and autism in a state with zilch services for adults with disabilities.

 

You are not alone. You come vent, etc. here whenever you need to.

[Denisemomof4]

Wow. This really breaks my heart. I can't even begin to imagine watching your own child, whom you love more than life itself, suffer so much. That's got to be the hardest thing ever. And watching your other kids suffer because you're having to devote so much time to their sick sibling, on top of them having to watch him suffer. That's got to be so difficult.

 

What's really jumping out at me is how hard you're being on yourself. You're OBVIOUSLY *NOT* selfish in any way at all! You are stretched to the max and you are burning out. Surely you've heard of caregiver burnout. I experienced this myself while I was caring for my mother. It was the hardest, and best, thing I've ever done, and my family did suffer because it took all of my time and energy. To have no end in sight has GOT to be overwhelming.

 

Don't you qualify for ANY sort of outside help? Do you know what ALL your benefits are?:grouphug::grouphug::grouphug::grouphug::grouphug:

[MerryAtHope]

(((Hugs))) to you.

 

In my case, not a child, but my dh has been disabled and unable to work due to chronic Lyme disease for the past 10 years. It has stretched me in ways I never knew possible, and pulled so many heart strings--the pain my children go through over this, the pain he has when he wants to do things with them and can't, the times he can't think clearly...it has forever changed our lives and definitely impacts school daily! Sometimes just the physical demands can be exhausting. My dh is not on a special diet right now (well, he is to some degree, but we're so used to it now I forget!), but we did have to watch things and cook special foods like you are doing for quite awhile--I personally find that very draining. In my case the bigger issue is scents--and everything in our world seems to be scented--deodorant, shampoos, lotions, cleaners--not to mention the perfume. It makes even going to church impossible for my dh most of the time. He can be out somewhere and some scent will make him stumble or fall, get dizzy etc... The vigilance is exhausting.

 

But...my kids have grown through this time too. They are more compassionate, caring, observant people because of what their father goes through. We've had to learn to have other kinds of fun--playing games together, reading books snuggled on the couch, watching favorite shows together, making a treat here etc...

 

There are all kinds of curriculum--but sometimes the curriculum of life is more needed in the moment than whatever curriculum I purchased. I like to think of it as God's curriculum being more important than mine.

 

As to what a mom is to do, the things I have learned in the last 10 years:

1, you HAVE TO take care of you. Eat reasonably well, drink lots of water, get enough rest, get some regular kind of exercise, and refill your tank from time to time. For me that means time with God and time with friends, or a walk in the woods, or time to write. Sometimes I can combine needs (an afternoon with friends where the kids can play & moms can talk, or a walk in the woods with my kids--and they can play while I sit and write a bit. Nature is very restoring for all of us).

 

2, set priorities. I usually choose one subject to focus on each year, and on days we can't do everything, I try to hit that one if we can. Then I know that we're covering what's most important even if we can't do it all. When the kids are young, it's ok to let play and life be a bit more of the curriculum, and let go of a few plans. One thing that has always been a constant for us is reading aloud, which we do before bedtime. I know the kids are getting so much from this time, even if we can't do all of their other school. But also see what your other kids can do independently on days when you need to pay more attention to your child who is ill. Workboxes have really helped me in this area.

 

3, involve all the kids in the care of the one who needs help. When my kids were little, they could still get things for Dad, bring an ice pack, take food to him etc... We're a family and we all help each other.

 

4, Kids are more important than curriculum. I can't tell you how many times over the years that we would finally be past a tough spot health-wise for my dh and I'd think, "we're going to get a good full day of school in today!" when one of my kids would need to pour out his or her heart, ask gut-wrenching questions, or just talk. This can fall under "life is curriculum," or "life is school," if it helps you set aside your goal for the day and focus on the needs of that child. Maybe you'll still get school done, maybe not. It's all good. Some things are more important than even math or reading. And math and reading will still be there tomorrow.

 

5, if school gets interrupted a lot, consider a loop schedule--If you do subjects 1-5 of 8 today, start with #6 tomorrow--do 6-8 and then start back with 1. We did this for awhile.

 

(((Hugs))) to you. Merry :-)

[Paige]

I have a child with cerebral palsy. I don't consider it an illness, but still, I can relate somewhat. She will not get better. I get so mad when well intentioned people keep asking me when she will outgrow it, when she will get better, how's she doing, etc.! I don't mind the questions from people who I haven't talked to before, but with family members who keep hounding me on it year after year when I've already told them- she will never get better!!! Each time they ask again is like a knife in my heart- especially if she is nearby and hearing it. My DDs condition does not sound as serious as your child's, but I still have to force her to submit to many painful treatments and I hate being the bad guy. DH is not the one who takes her to appointments or has to ensure compliance so it's me who holds her still while she tries to kick everyone, and it's me who has to tell her to quit fighting and no amount of begging will get her out of something she needs. And I hate the Holland poem too. We're not in Holland. Maybe it applies more to other disabilities, but for us, I'd say it's more like we're in Disney World but not allowed on any of the rides. It gets harder as she gets older because the things she can't do becomes more apparent and more painful. All toddlers are wobbly and fall so nobody notices or cares. But, when you are school aged and still doing it, people notice and they don't always slow down so you can play too.

 

I think it is perfectly fine to have yourself a pity cry every once in a while as the mom. It means we aren't jaded; we still care. :grouphug: If it quits hurting me, then the way I relate to her and treat her when she is struggling may change, and that would not be good for her.

[JudoMom]

:grouphug::grouphug::grouphug:

 

My ds8 has arthritis and chronic headaches (with the occasional migraine thrown in for good measure). We're blessed that he's not severely ill, but it does have an impact and it breaks my heart that he's always in some degree of pain. He's never been bedridden, but he's constantly fatigued.

 

It's hard on so many levels, and I'm so sorry that you're having to deal with a chronic illness in your child. I know it sounds hokey, but I try to look for the positives. My ds8 is so kind and compassionate (he'd like to be a doctor or a vet), and he's also full of great ideas (since he copes with the pain by "checking out", he spends a lot of time daydreaming).

 

Is there any possible way you can take a break until after Christmas and just spend the next couple of weeks recovering your joy? I so wish I lived near you so I could help you out and give you a break. My heart is heavy for you. :grouphug::grouphug::grouphug:

[Chris in VA]

My eldest is an Aspie and my middle is a drug addict. Sucks, doesn't it?

Sometimes, in the middle of all the acknowledgement that I am closer to Christ, a better person, more patient, better at loving unconditionally, etc. etc. etc, I just have a good cry and get mad, and say, well, "This sucks and I hate it!":tongue_smilie:

 

If you can't be real with yourself, what's the point, anyway?

 

There are days I bless the Lord for giving me the challenges I know will draw me to him, and there are days I wonder what the hell he's doing.

 

Just human, around here.

 

I feel for you.

[LittleIzumi]

I understand. I posted the other day about all the food allergies and intolerances in our family. We can't eat out. It's just so darn difficult and risks are simply too high. I can't take most of my kids out for ice cream or even buy them a chocolate bar. A "treat" is no longer a stick of gum or a trip out for a sundae. It's a toy or a book, which of course, costs more.

 

In some ways it's liberating because we don't "waste" our money on eating out but it's also very sad. A nice meal in a restaurant will never be a reality for our family and I feel bad for the kids. They used to love the odd time when we did eat out.

 

Of course, with all the food stuff going on, we don't *have* the money to eat out. The few items of gluten free baking I buy (some muffins, bread to make my life a little more sane) and all the other changes I've had to make, cost so much. We're blessed dh has a good job. I shouldn't complain. But oh, to make a few boxes of good 'ole Kraft mac & cheese for everyone and call it a "meal"... that would be so therapeutic some days.

 

We can't have soy milk either here so it's almond milk. Ack. That stuff makes dairy seem so cheap. Most of the time, if I find a cereal my kids can have (never the same for all) they have it with water.

 

 

:grouphug::grouphug: Dd and I are on rice milk. I like almond milk better but I finally found a cheap place for rice milk, and dd hates almond milk :glare:. I feel bad that she misses out on simple stuff, like half of the library summer reading treats are pizza or ice cream, there's no point to Book-It (pizza), etc. But I know that's nothing compared to what some of you guys are dealing with. :grouphug::grouphug::grouphug: to all of you, and go get a pedicure if you can!!! :tongue_smilie:

[sbgrace]

:grouphug: It's not selfish to grieve the struggles of our children. It's universal I think esp. among moms, at least in the special needs circles I frequent. I think men grieve too but it often looks different.

 

My son has a chronic illness as well. He, too, sleeps sometimes 16 hours out of a day. In our case he's been sick since he was born and he's much healthier now than prior to diagnosis when he was close to four years so that helps some. I think I've done my grieving at least for as far as the disease has taken him to this point. I try not to think ahead.

Edited December 4, 2010 by sbgrace

[Denise in Florida]

:grouphug::grouphug::grouphug:

When my dd was diagnosed with a chronic illness a close friend whose child also had lifelong issues told me it was like joining a club you never wanted to join.

 

We have experienced highs and lows with people we have nothing in common with other than a waiting room at the children's center. I have met brave, brave families and seen women who are so strong for their kids fall to pieces with their friends. I remember one mom, I didn't know her name but when she started crying we just closed a circle around her and let her cry. :grouphug:

 

Take support where you can.

[Green Vixen]

Hi Jane,

 

I am sorry you and your family are having to deal with a pediactric chronic illness :-( I don't have any advice as a mother with an ill child, but as a ill child who has grown into an adult.

 

I don't know the details of what your child is dealing with but as a young child I had Chronic Fatigue and Immunune Dysfunction Syndrome (CFIDS) and Fibromyalgia. I went to K and half of first grade before my parents pulled me out of public school and homeschooled me. It was definitely the best thing they could have done for me! I loved it and it allowed me to be in bed on those bad days, and have as normal of a life as I could with my conditions.

 

We unschooled so it was a very relaxed environment :-) I know many people don't "believe" in unschooling but it worked for us. I graduated from public high school and college with honors, and am almost finished with a masters degree. So don't stress yourself out if your child needs to rest a lot, they are still learning.

 

Now that I am a mother I can appreciate how difficult this must have been for my family! Just know that you are giving your child a wonderful gift that they will appreciate when they are older.

 

This is something that we never did but I think would have been helpful, I would highly suggest getting some family counseling. If that isn't feasible than at least for your ill child. I don't know how old he/she is but the teen years are very hard especially with a chronic illness.

 

It's ok to feel sorry for yourself and your situation, that is very normal. Is there a on-line support group for whatever condition your child has? Maybe you could join and speak to other parents dealing with this, and/or if your child is old enough they could get on there and speak to other kids that have this? I know this would have been helpful if it had been around when I was young. Just knowing that you aren't alone can be a relief!

 

Remember to be kind to yourself and try to find a little time for just you. Go grab a coffee and stroll around the bookstore :-)

 

Take care,

 

Marisa

[TravelingChris]

I certainly did not know why God gave me the medical problems that I have when I first got them. I have several chronic illnesses and am disabled to some degree. But I knew God had a plan. My illnesses were a major reason for homeschooling. They changed how we lived our lives. My children grew up knowing that Mom can't do everything and certainly not all in one day. But you see, when I first got sick more than 17 years ago, I didn't know that my children would have different chronic illnesses. God knew what would happen and I think He used my illlnesses to make it easier for me to be able to care for my children. For my first child, homeschooling was fine but never a necessity for illness reasons. FOr child two, without homeschooling, she would be at least a year behind in school. SHe would be having lower grades that would be hindering her. Her spirit may have been broken since not everyone understands issues such as seven month long non stop headache or near fainting because of inadequate blood circulation (her current issue). Nor do I think that if I had a busy career I would have noticed that my youngest had an abnormal amount of fractures and had insistently followed up. I probably would have decided that the geneticist is right or since the initial tests showed nothing, it was all okay. Same thing with her eyes that eye doctor after eye doctor missed.

I think that I have been able to pass on the lessons of chronic illness to my two daughters. My son, who was older when I was sick and also didn't get sick himself until adulthood, is still a question. But I am teaching my older daughter how to act- like when one of her friends can only go to community college although he is smart because he has dyslexia and can't do standardized tests, and how two young men she knows who had their hearts set on joining the military like their fathers but have disqualifying medical conditions, how she can help them through these times with her experiences.

So it is hard but I think it makes us better people.