Wednesday, April 6, 2011

My Vulnerability

This is something I've been feeling a need to write about. I've hesitated doing it for many reasons. For one thing, it doesn't exactly go with the theme of my blog, and for another it's extremely personal. It's something that's been deeply ingrained as part of my life for over 15 years now.

My husband is chronically ill.

We have five children and we struggle just to get by.

He's been diagnosed with both Chronic Fatigue Syndrome and Fibromyalgia. As far as we know he's had varying degrees of these illnesses for about 20 years now. I've known him for 15 years and we've been married for 12 ½ years.

He was relatively healthy when we were dating. His health goes in waves. He has periods of relatively good health and periods of severe illness. He has depression, pain on a daily basis, struggles to fall asleep and stay asleep, and working full time has become impossible. He was recently awarded disability status with the government after a two-year process of applications, three denials, appeals, and finally a hearing before a judge. He'll start receiving financial compensation for that. We think the disability income will make it possible for us to barely be able to pay our own living expenses, but we won't know for sure until we start receiving it.

We live on very little. The only debt we have are his student loans which are currently in deferment. We own one vehicle which is 18 years old and getting too small for our family, and we don't know how or when we'll be able to get a larger one. We've never owned a home and we get by on assistance programs to help us with rent, food, and medical coverage.

I do a lot of things to help make ends meet. I cook the majority of our meals from scratch. We don't eat out. I make my own laundry detergent. I clean with food items (vinegar, lemons, baking soda, etc.) that we can get through our assistance. We use cloth diapers because we can't afford to buy disposable diapers. I don't use paper products like napkins or paper towels. We use real towels and wash cloths that can be washed and reused. I use a Diva Cup. Our kids' clothes are all hand-me-downs from cousins, and most of our furniture are also hand-me-downs and outdated. If we need to go somewhere that's within walking distance I make an effort to walk with the kids. I'm sure there are other things I do that I can't think of at the moment.

I've found that these things help us save a lot of money, but they also help give me a greater sense of self-sufficiency. It sounds like an oxymoron to say that I'm striving to be self-sufficient when we're in a situation where we depend so much on assistance from government programs and friends and family. I have to do every little thing I can to feel that I'm at least doing something to contribute to our family's well-being, and these things help.

We don't have any credit cards. We don't buy anything we can't afford, and there's very little we can afford. I work doing freelance writing because I can do it from home. It's not enough to support our family, but it helps pay for gasoline and some other necessities. I make enough money each month with my essential oil business to pay for my monthly order, which is a blessing to my family's health.

I've tried to work hourly jobs, but it hasn't worked for us. My husband isn't currently well enough to take care of the kids for me to work outside of the home. We decided early in our marriage that we wouldn't put our kids in day care, and our family that live close by all have their own families and health issues to take care of so we can't rely on them to help take care of our kids. We feel strongly that it's the parents' responsibility to raise the children, and that has been a conscious effort for us.

I still owe money to my midwife for her services during my last baby's birth almost two years ago. Thankfully she's understanding and willing to work with us.

I'm not looking for pity, and I'm not really sure why I'm writing about this. I just feel a need to get it out there. Maybe there are others out there in similar situations who can relate on some level.

I can honestly say that I love my life. While it's extremely difficult, I've come to realize that no matter a person's financial well-being or circumstances, every person on the earth has something that's extremely difficult for them. When I hear about the struggles that other people go through I feel deeply sorry for them, and it helps me appreciate my own life and all the trials that come with it. I wouldn't change anything about the choices I've made and the steps that have brought me to this point in my life.

I have hope for the future. I hope that a full recovery may lie in my husband's future, and if not, that we'll be able to keep moving forward and appreciate each day. That's one thing I've learned: to try to appreciate every little thing. I get depressed at times and really feel sorry for myself, but when I think about the wonderful things in my life I feel happy.

Most of the best things are the intangible, immaterial parts of my life. Living in a beautiful area with varying seasons. The Rocky Mountains, sunshine, and fresh air. Knowing who I am and understanding that the work I do as a mother of raising my children is the most important work I'll do in my entire lifetime. Seeing my children grow each day and watching their developments. Hearing the words they speak, seeing their bright smiles, and all the crazy things they do. The kisses, hugs, and snuggles. Little hands, tiny toes. Watching them learn and excel academically and seeing their personalities continue to unfold. My religion and connection with God and my Savior Jesus Christ.

My husband spends much of his time at home and often can't go places with us. I've heard people comment that I'm like a single mom, because most of the time people only see me and the kids. I firmly disagree. Even if he can't do the physical things to support us, I have his support. He backs me up emotionally, mentally, and spiritually. He encourages me to do the things that are most important to me, and he honors me as his wife and the mother of his children. He gets to spend a lot of time with his kids when other kids' dads are spending countless hours at work.

It's not ideal, but I don't think anyone leads an ideal life. It's MY life, and I'm grateful for it.

19 comments:

  1. (((((hugs))))). Love and blessings to you.

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  2. I can relate, to this so much. My husband works and makes OK money but with the rising costs of living and the lose of overtime, we could no longer afford to live. We make to much to get assistance. So we have to go to food banks and eat whatever is given. Mostly boxed processed foods, but its food and I am grateful. We lost our home and had to rent. My 4 year old tells me all the time "Mommy I want my other house back. I miss my old house" It breaks my heart (even-though the house we are in now is 10 times better)but its not ours. If it were not for churches, food banks and family I dont know what we would do. GOD is good and we manage to get the help we need. I have to stay faithful that things will turn around. I will be praying for you and your family and a recovery for your husband. Thanks for posting this.
    Nicole Smith

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  3. ((hugs)) to you- thanks for sharing. You are a very inspiring mama! :)

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  4. I thought this was really touching -- a reminder that we all have our own personal pains and struggles and just how much we really depend on God and one another. Our Bishop often talks about how much he'd love to strip away the facade in everyone's life so we could all see how much pain and joy there really is, and how it's not where we expect it, and we would begin to realize how much we need each other and how much we can learn from one another . . .
    My Mom is dealing with fibro and currently really struggling with sleep and not being able to fall/stay asleep . . . it is such a difficult thing to live in chronic pain . . . if people really understood what it was like, I think the compassion would be overwhelming . . .

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  5. Congratulations to you for freeing yourself from this,"secret." I am sure you feel relief.

    Thanks for having the courage to share. My family has had it's share of ups and downs- so I know what you are talking about... Gratitude and appreciation changed my life in profound ways... running water, food on the table, a warm bed, a computer, $$ to pay that next bill can all be cause for a mini prayer of rejoicing. Those things truly are prosperity.

    For your husband: I cured myself from fibrimyalgia and chronic pain with alternative medicine, qigong healing, meditation and EFT. There is lots of free stuff on the internet on using EFT- check out my favorite, Rick Wilkes at www.thrivingnow.com, also check out youtube.

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  6. We are in a similar boat at this time. State insurance, energy assistance and food assistance and we are still barely getting by. Thank you for being so open and courageous. Xoxo

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  7. Thanks for sharing. It is always a nice reminder that people have hidden burdens. We can't usually see them or know what they are unless people choose to share them.

    I am so glad that you are happy with your life and doing the best you can to raise your sweet little family. Faith in the overall plan can really help us to move forward day by day!

    Hugs, Sheridan

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  8. So neat what you do to help your family save money! You're amazing!!! And I appreciate the things you post about natural child birth. So neat!!!

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  9. It truly sounds like you have tremendous health and financial issues and are relying on disability and government assistance to survive. But I have read that you continue to plan a larger family and put an even bigger burden on yourself, your children and the assistance you already receive. I can't help but feel badly and wonder why you feel you need to bring yet another child into an already strained situation.

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  10. Anonymous, thank you for your concern. I can assure you that my husband and I have both thought seriously about our situation and whether or not we should continue to have babies despite our physical and financial struggles. I'm not sure if I can address your concern to your satisfaction, because I don't have an easy answer and anything I can say runs the risk of sounding cliche.

    What it comes down to for us is that we don't put a price on our children. Our children are the best things in our lives, bar none. They bring such light and love into our lives, that I can't imagine going through the hell we've been through without them. I don't feel our children are suffering because of our circumstances. We've been able to learn and teach them important principles as we've had to navigate our path. Their needs are met, and we do our best to enjoy every moment we have together. Our children give us reasons to keep pushing forward and keep looking for better ways and to improve ourselves and our lives. I wouldn't trade our children for all the wealth and financial security in the world. There's just no comparison.

    Our current plans are to have one more baby. The reasons for this are extremely personal, and I've explained some of them in one of my posts about my latest miscarriage. We feel very strongly that our family is not yet complete, and we believe we'll know when it is.

    Programs like disability are in place for situations like ours, in which a person is physically unable to have gainful employment. Do you believe people who have physical and financial trials should also be denied the joy of children and family?

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  11. All I can say to Anonymous is WOW! How dare he/she question someone's choice to have more children just because you shared the struggles you were currently facing and now he/she feels he/she has the right to take your situation and deem how many kids are appropriate with your level of current income? My questions to him/her are: 1. Is you a Christian (that is, does you believe in God who provides ALL of our needs?), 2. How many children do YOU have? 3. What is YOUR financial situation, and 4. Who made YOU to be the sterility police??? Totally makes me mad.

    How much money is enough with kids? 50k, 60k, 100k, and for how many kids is that going to cover? People who make more money tend to have less kids because they think of $ per kid, instead of what that human life has to offer in their family.

    I currently have two kids (5&3), went through a very rough time financially while my husband was in school and changing careers which made him go to school again, and WE made it. The support we got from friends/family members was overwhelming. Did we have the newest stuff? Nope, but were our kids taken care of and all of their needs met? Yep.

    Thank you Cherylyn for your brutal honesty, for your transparency, and for keep pressing on making a difference in women's lives! <3

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  12. We have a limited amount of fertile time to bring children into this world. I waited for 13 years between my first two and my second two children and even though it was the "right" thing to do (financially speaking)and parents/neighbors would have disapproved if we had had more children back then, I would cut off my right arm to be able to go back in time and have even just one more child between them. Now I'm too old for more and it breaks my heart because I feel like someone is missing who is supposed to be here. There will always be challenges, whether financial, or otherwise that can stand in the way of having more children but when that window closes, it is forever. I wish you the very best of luck whatever you decide.

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  13. ::sigh:: I do so want to supportive and non-judgmental because I love your facebook page and I think you're doing a good thing. I just saw this posted though, "Why do I continue bringing babies into an already strained situation..."

    I don't think that was answered here. You gave reasons why it's ok for you with the way things currently are in your life but not why you bring more children into the world. Perhaps you alluded to it with your religion but it wasn't answered.

    I have a very hard time with this concept. I think women/men should have as many children as they want provided they can afford them... and I'm not even talking about exorbitant amounts of money... I'm talking enough to raise them by providing a roof over their heads, clothing on their backs, food in their bellies while simultaneously being able to have parents who can provide for their emotional wellbeing and spend the time it takes to raise them with them and not have to worry while doing so.

    I don't have a problem with government assistance, in the least. I wish we had a socialist system in place where we all contribute to each other but that's not in America's cards right now.

    So anyway, I think you're doing the best you can and you're taking care of your family but at what point is enough kids enough? At what point can you still provide for them physically as well as emotionally and spend enough one-on-one time with each child individually? Especially with a husband who can't do alot of that? And at what point does your joy of raising children interfere with your children's joy of being raised in a household where all their needs are regularly and satisfactorily met and they are able to have parents who don't have to struggle because they see and feel that.

    I am not a Christian, but I do believe in something bigger than all of us that connects all of us. I think we were created with intelligence and were created to think for ourselves as individuals. We were given the brain capacity to figure out how bodies work and to decide when and how many children we can sanely and sufficiently care for. Being intelligent creatures, we require a lot of care as children... a lot of specific attention to foster that.

    With all that said though, my husband is Child #5 in a family of 9. He grew up in a village in Mexico in the 70s and 80s and they were poor. For real poor. He frequently didn't have shoes or had to patch up holes in the bottoms of the shoes he did have, not enough food or enough time and attention spent on him. He loves his family and all the children are grown now and making it just fine in life but it wasn't a good time for them then. It's nice as an adult to be part of a large family but does that justify what they went through as children?

    p.s. I haven't read any of the other comments so perhaps someone's already answered or said the same as I have.

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  14. Heather J, you make some really good points, and there's a lot that you said that I agree with.

    Our children's needs are and have always been met. My husband feels badly that we haven't been able to afford more luxuries, but I'm not concerned about that because the necessities are taken care of. We've never gone hungry, homeless, or naked.

    You're right that I didn't really answer the question put forth, but I'm not really sure how to answer it. You mentioned my religion being part of it, but the reality of it is that our plans to have another baby are almost completely based on personal spiritual experiences and beliefs. That's why it's so hard to explain to someone exactly why or how we plan to do this. No one else has had the exact same experiences as we have, and I believe each person has a unique path with unique experiences to help him or her navigate through life.

    It could take me a lot of typing to explain every little nuance that has led us to this decision, but I'll try to put it in a nutshell.

    My husband wanted to stop having babies after each one was born. He loves babies and children but felt tremendous guilt about being unable to work consistently and provide personally for their needs. In his eyes it wasn't the same if their needs were provided through the kindness of friends and family and through assistance programs. He wanted and still wants to be the provider for them. In a way his disability status has given him that ability. It's HIS income that he can use to support his family.

    We've always known we would have a girl (through very personal spiritual experiences early on in our relationship). Then we had 3 boys. People gave us s hard time about "trying" for the girl we knew would come. When we did have a girl (baby #4) we felt (also through personal spiritual experiences) that she wasn't THE girl we were waiting for. That's not that we didn't love her and cherish her, but we knew that she had a little sister who was still waiting to come to our family. I feel in some ways that she's coming last to help ensure that everyone gets here. With my fifth pregnancy I was convinced it was that little girl we'd been waiting for, and was fully prepared to stop having babies after that. We had our fourth boy, and can't imagine life without him. We still know (through yet more personal spiritual experiences) that there's another little girl waiting, and we know our family won't be complete without her.

    I can't convince anyone that what we're doing is best, because no one else has been in our shoes and had those very personal experiences. I also don't feel that what's right for one family is necessarily right for another. I'm simply trying to live my life the best I can with what I have.

    People have different priorities and motivations. They make decisions based on different reasons. Some make family planning decisions based solely on financial means, some solely on religious beliefs, and many are a mixture of reasons. I don't expect anyone else to understand my choice and my reasons, and I'm glad I don't have to rely on someone else to dictate those choices to me.

    I also feel that nothing really stays the same. I believe in miracles and that my husband could at some point be healed. Whether that means a cure will be found for his conditions, or he finds healing through other means, I still have hope that someday he'll be able to once again work full time and support his family, only more consistently. I also feel that other circumstances can change, and I may be able to expand my writing and other business ventures to better provide financial support for our family. I don't feel that taking our current situation in mind is a reliable predictor for how we'll be able to support our family in the future.

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  15. Since we do have that freewill and are individuals to think for ourselves, we can't make decisions for each other but have to live the lives we have and make decisions for us. I'm sure you've thought about all aspects of it and there's more to it that the rest of us can't see or understand no matter what... I'll count myself among those. However, I'm sure you're probably not damaging your children and I know you care. Good luck to you all! Thanks for sharing.

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  16. I can't help but think of Matthew 6:28-29 in reading your post. "Consider the lilies of the field, how they grow; they toil not, neither do they spin and yet I say unto you, that even Solomon in all his glory was not arrayed like one of these."

    When we are doing God's will, He will ensure that we are taken care of. If it is His will that you have another child, ensuring that you can clothe, feed and house that child may not be easy, but it will certainly be possible. It is not easy to trust in Him, but when we do, we can't go wrong. You're a wonderful mother. Keep up the good work.

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  17. Thank you for posting such an honest and brave essay. My family is also low income. My husband works full time (and then some) as a social worker. I am a stay at home mother. I quit my job because I would have been working solely to put my children into daycare - in other words, I did not make a very high salary, and day care rates where we live are very high. We receive some federal assistance to meet our food needs, and our families have been extremely kind and helpful. We do with out a lot, but it is worth it for me to be able to stay home with my children. There is so much judgment and lack of compassion in the US about the poor and poor mothers, and it breaks my heart. No one has the right to tell another person that they can or cannot have a child. Our children are blessings, and just because someone has wealth does not mean they will make a loving parent or provide a loving home. There is so much I would like to say and share with you, but all I will say is thank you again, and wishing you great peace and joy.

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  18. So much hostility for asking a simple question. No I do not feel someone with a disability or financial struggles should be denied the joys of children and family. But you currently have 5 children. Do these 5 not bring you enough joy? It feels like you are trying to fill a gap somewhere else in your life with children. I just don't understand how you can see 5 children barely making it by and adding 1 more to fulfill a need that you have. It doesn't seem fair to any of the children. I believe in miracles too, and based on your history, it would take one to change your situation. Is your husband permanately disabled? If he isn't even able to help with the children, it just feels like your motives are somewhat selfish. You are right about husbands out working spending countless hours away from family. But without people like them who pays for your public assistance?

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  19. I didn't intend to come across as being hostile. I'm sorry if I did. This is a really sensitive topic for me, and I've been attacked before because of our personal choices, so I guess I was expecting another attack and I got defensive.

    Technically he is permanently disabled, but his health does wax and wane. He goes through periods of relatively good health and periods of very bad health. I don't feel that anything it truly permanent, I do think things can change in the future. We've paid into the public assistance system as well as others, and I don't feel we're taking advantage or using it needlessly. Disability income is fixed and won't increase as we have another baby, so we're not adding more burden to the system by having another. Someone told me that I was needlessly making my life more difficult by having more babies, but I don't see it that way. Children definitely take work, but I don't see it as more difficult with more children.

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