What’s God’s plan for May?

Posted on Nov 25, 2011 | 37 comments

This little girl is a blessing. But, what of her injuries?

I wrote a post this week for BabyCenter in honor of Thanksgiving called How I’m thankful for my half-brained baby. Never before have I received so many comments where the prevailing theme was God.

Your daughter is beautiful!!! God bless her always. Thank you for writing such a beautiful story. People complain a lot about everything and here you are making the best out of this.

My prayer is that you and your little angel will always be the best companions! This was just the beginning. The best still lies ahead. Always remember: the darkest hour is just before dawn. May the Lord richly bless you!

These are all beautiful sentiments, but I think it will disappoint them to know that I’m not a very religious person. I’m curious. I’m interested in the world. I wonder about a lot of things and I certainly can not explain them all. But, religious?

I am Jewish. I definitely associate myself as such. I am interested in getting involved with the London Jewish Community, but I haven’t as yet and I imagine it will take Ieuan getting a little older before I do.

I always wondered whether, in a time of crisis, I would turn to God. People seem to do so, suddenly, when the need is great. Then, I had a time of major crisis after May was born, when I knew her life would be forever limited and I thought my life was grimly over as well.

Weeks after May was born, I realized that not once had I prayed to God, nor had I grown angry with him for what he had done.

Before it happened, I questioned the integrity of my lack of belief. After, I no longer doubted. I feel no connection to God. I wish I did. I wish I could access the strength of faith that others do. But, I don’t believe.

Other people are welcome to pray for May. I like that May is not far from people’s thoughts. I don’t mind when they call her a blessing or a gift. I feel those things too. But, her injuries are not a blessing or a gift, and I certainly don’t want to think of them as the opposite, a punishment.

But, what of talk of God’s plan? That God would fufill his plan by destroying May’s life, is not something I can contemplate. I can’t conceive of how the brain damage has benefited her in any way. That it may have subsequently meant some other good has happened is inconsequential.

Many people have wanted to comfort me by explaining that God doesn’t give us anything more than we can handle. By that, they always mean me. He didn’t give ME anything more than I can handle. They never mean May. Because clearly, May’s injuries are more than she can handle.

Finally, one last comment from the BabyCenter post:

My prayer is always for you and your daughter. Dont worry, soon she will recover miraculously.

There are no miracles at hand for May. One of the most difficult things for me has been to face this idea down. How wonderful it would be to believe that miracles await May, but they don’t.

What does await her is years of love and strength, not from God, but from her parents, family and friends. What awaits her is the best that education, equipment and therapies can offer her. What awaits her is people: patient, kind and generous in her community. I worry about many things, but I trust that, in the end, we will find her all of these gifts.

Do you want to share your thoughts on God’s plan for May? I’m genuinely interested to hear from all sides. 

37 Comments

  1. Yeah, weird. It seems like calling May a “blessing” or a “gift” is just being kind. Surely they’re not thinking, “Wow, what a blessing. I wish my child was severely handicap.” As for God, I don’t know if May’s “injuries” are part of His “plan”, anymore than 9/11 or Hurricane Katrina were part of His “plan” … sometimes things are out of His control because He gives us “Free Will”, which includes everyone around us. I think God’s plan for May is to give her the best two parents He could give her, who will give her everything He would want for her — love & strength : )

    Adrianne

  2. For a person with strong faith (such as myself), nothing can cause me to question it more than the struggles of children. That said – I don’t believe that God caused May to be born with her severe brain damage. I believe that something “other” causes hurt, pain, and injury – including what happened to May.

    I don’t know that I could say what God has in store for May. I do believe that God has a plan for everyone – including May. Right now May (and you and your family) are an inspiration for so many people. I know that I feel uplifted after reading your posts. You and May have a strength that blows my mind – and inspires me to do better.

    So, to wrap that all up (I have to say, I find it somewhat difficult to have a theological discussion via blog comment): I don’t believe God caused May’s injury for ANY reason (God is a loving God and wouldn’t cause his people to suffer). However (again imo)- God can and will use May to reach people through her.

    • Sorry for displaying this late Rebecca – God sent it to the Spam folder (joke!)

      I also think carrying on this conversation on the site is challenging, but I still find it very interesting! I have a tendency, probably like most people, to hang out with people who have the same viewpoint as me. It is fascinating to read other people’s thoughts on this theological question.

  3. Nicely put Adrianne, I like your choice of words. I feel May came into our lives to teach us about the small wonders of the world. To enjoy music, art, dance and laughter. My neice is a happy little girl and she doesn’t know any different. I don’t think she is in pain or a sad child. She shows her joy for life with a cuddle from dad, a bounce on Mom’s knee and of course a laugh with her favorite Aunt Carrie. I don’t see why “God” has anything to do with a message from someone one, like when people say to me, “have a blessed day”, if I don’t have a good day was it their fault? It’s not your fault that May was born the way she was, this is just who she is and all we can do is love and play and enjoy our precious Miss May!

  4. No godgoddess talk from me. Not a believer.

  5. As an atheist, the only thing I could say is that I wish the life be kind and generous with May, and if I don’t believe in a God with a plan for May, I believe in people who are really interested in doing May’s life the better as possible and I truly believe that this is very important for her.

  6. My son also has severe cognitive disabilities, seizures, and low muscle tone. I don’t know if I believe in G-D or not. I want to , I used to but well none of us can know for sure right? That is why they call it faith. I have learned love and faith have to be my almost constant companions . Love so I can celebrate my beautiful son and faith so I can believe in my ability to help him and the possibility of creating for him a safe and happy future. I respect anyone’s time and thought in sending well wishes being through prayer , kind words, sharing information, or even just a good bar of chocolate.
    Andrea

    • Chocolate works for me too!

  7. Currently I teach preschoolers very much like your May, and have taught children with multiple disabilities for 17 years now. I don’t really know what I believe about God and God and children with disabilities, but I do believe that every child, disabled or not should be celebrated for the person they are. And I do believe that as people we should be judged by how we treat those who need us the most.
    Lisa

    • I love this Lisa. I wish everyone – especially politicians – felt this way.

  8. Not sure if this comment is going to be well-taken, but here goes. I’ve been reading your blog for a while and I love hearing about May and Ieuan. First, I’d like to say every child is special, even if he or she is disabled, and I’ve learnt to look past May’s disability and just to see the beautiful child she is.
    I’m very spiritual, you could call me a New Ager. Recently there has been a lot about Indigo and Crystal Children going on. Indigo and Crystal Children are children who have a different way of thinking from the previous generations, who are here to break down the old ways and make the world better. Indigos came first, they are supposed to break down the old barriers. Crystals came next, and they are here to teach love and harmony to us. One thing that characterizes them is that they have very large, wise eyes. Another is that sometimes, this world is not really made for them (remember, they’re used to love, peace and harmony) so they retire into their minds. You could call them disabled, autistic, whatever. I am a Crystal Child, and I believe that your children may be too.
    This is just my view of things, my “religion” and you are free to accept it or not. I won’t be offended ;) But whatever we all believe, May is a special child, in her own special way!

  9. MamaLewis, you’re so realistic and sane, and you just don’t get too down about May’s condition. But I digress.

    Syngagogue is a great equalizer. The rich and the fat and the stupid and the pious and the intellectually disabled are all together in a room, and aside from the rabbi, there is no real hierarchy. Synagogue, more so than other places of worship, is much less about god and much more about community. Don’t you miss people who understand your world-view, who grew up like you, who have a healthy appreciation for self-depracation… and cheescake.

    Ieuan is not too young for synagogue. I think it’s important to give our kids a basic foundation in a religion, so that religion is demystified for them. Otherwise, they can be quite impressionable, and run off and join the hare krishna, or worse become Lubavitch ;). I think now is the time to be introduced to the community so that when Ieuan IS old enough to eat latkes and see Chanuka candles, you will already be an organic part of the community. Also, May may be brain-damaged, but she deserves to eat the soggy defrosted gefilte fish (we must all endure) that are part of her heritage!

    Love you Strong Stacie

    • I read this out to my husband I loved it so much. Very funny, and you also reminded me of my childhood. Thanks!

  10. not commented before. The God/god talk makes me a bit crazy. I agree completely – how can this be a “plan”. Not buying that. Also not buying that you don’t get more than you can handle….I have seen too many families crumble from addiction, death of a parent, loss of a job, home…. All that said, I do believe in God, and sometimes pray but not sure where my god would fit into this.

    • I always think that “you don’t get more than you can handle” also comes from a frame of mind that says, “If you work hard enough, you can accomplish anything.” I wonder if the people who say these things have ever had a challenge of this magnitude. Like you said, sometimes a situation is not surmountable.

  11. It depends on the situation how I land on this one. Bad things themselves are not a blessing. What happens after, that may be a blessing. Depending on your point of view. People either run to God or away in times of crisis. I say whatever works for you, do it.
    I consider myself a Catholic, and by that also Christian, but the “Dont worry, soon she will recover miraculously,” That makes me angry. I take personal offense to it, as much for May as for myself, it makes me feel like God made a mistake & will eventually fix his mistake when he gets around to it…..sorry, no, ain’t happening.

    • Sarah, I’m curious to hear whether you think God had anything to do with May’s injuries in the first place?

      • That one, it depends on the day. I tend to say (and believe) God doesn’t make mistakes. Hence the reason why I don’t see God coming back to “fix” things though miracles. I don’t think He can really be that bored. But don’t get me wrong I have days (weeks, months) when I wonder why this has happened to some people & not others. Did that answer your question. I’m not sure it did.

        • I wasn’t looking for an answer exactly, just your perspective. So thank you! And, to what you were saying, I suppose some people would say we aren’t meant to know.

  12. This one, of course, is on many people’s minds, much of the time, and a tremendous amount of theology is based around the question of bad things and good people.
    My background is Orthodox Jewish, and I am still in that world–somewhat to the right on the Orthodox spectrum (I cover my hair and wear a skirt, for example), but not ultra (I have internet, for example).
    For me a lot of it comes down to, we just can’t understand God’s intention. I do believe that every person has a tafkid, a mission, in life, and I feel that the handicapped people I know improve the world greatly by being in it. First by their own actions, their love and smiles (those people who are able to express themselves to this degree), and second because…It’s complicated, and I’ve never figured out how to explain it well.
    This is a topic I’ve thought about a lot, personally. When I, or most people, see someone with an obvious handicap, the immediate emotional response is sympathy. Followed by an unusual admiration/love for the handicapped person and his/her family.
    On one occasion I was acquainted with a severely brain damaged woman, quite a difficult person, who was able to walk and I believe feed herself but was non-communicative and angry, prone to biting and hitting herself and her caretakers. I don’t think I ever saw her smile. Because of her situation, people accepted her behavior, though of course they tried to help her learn better control, and those of us who knew her felt sympathy for her. Then I found out that this young woman had been a regular baby, girl, and young woman, and had been brain damaged when she was hit by a truck–shortly after she’d become engaged. Aside from the additional horror of the situation for herself, her family, and her fiance (who had married someone else by the time I knew her, several years later), I have never been able to forget that… I might not have liked her. When she was regular and healthy, she was just like other people. Maybe she was a bully. Maybe she was a snob. Maybe she was delightful but we’d never have had anything to say to each other. Maybe she would have been my best friend. However, with her tragedy in place, I feel a love and responsibility for her, which teaches me something about how I should have a sense of love and responsibility for all mankind, whether I like every individual person or not. Whether I will be able to accomplish this emotional feat for the general world is unknown, but experiencing it directed toward handicapped people is practice for the soul, and reminds me of what the ideal is.
    Is this something that is pleasant for the handicapped people themselves? In many cases, of course, it isn’t, although it is my hope that no matter what the disabilities, people can experience some joy in life. But people with these disabilities are able to bring something to the world–to accomplish an important tafkid–solely by living with their disabilities. Those of us who are regular folks need to work hard to accomplish a small amount of the good they can accomplish just by existing.
    This may be Pollyanna-ish, or Goody-Two-Shoes, or She Just Doesn’t Get It, or Man Those Religious Women…, but it is where my own thoughts on the topic take me so far. I’m sure my ideas will continue to evolve as I grow older.
    Did God cause the disabilities? In most cases, yes. I don’t understand why or how God chooses which people to give disabilities to, and that is something I doubt I’ll ever understand.

    • I don’t know if I agree with you – let’s be honest, I’m not sure how I feel about the issue! But, I wanted to say I appreciated such a considered answer. All these comments, yours included, give me a lot to think about.

  13. I’d like to point out that when people say God won’t give you more than you can handle they are misquoting scripture. People like to mush together:

    1 Cor 10:13, No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

    and

    Philippians 4:13, I can do everything through him who gives me strength.

    No where does He say he won’t give you more than you can bear, He says he won’t give you more than you can bear THROUGH HIM. It’s God that has unlimited strength, no us. I know I don’t have the strength to handle everything that has come my way in life, but God can handle all of it. I have no way to know to know what May’s life would have been or how this could be a benefit to her. Her reward/benefit may never come in this life, that doesn’t mean it’s not part of God’s plan for both her and those she touches with her life. I know that doesn’t make you feel better or improve May, but I truly believe God has a plan for each of us. A fried of mine recently posted a quote by Gary Chapman, “God does not run a cookie factory where we all come out looking alike. His is a snowflake factory, noted for variety.”

    • Katy this is really interesting. I had not considered that it could be a misrepresentation of what is written in the Scriptures.

  14. I am not sure if you will still be reading comments on a post this old and I know you were looking for other perspectives and I tend to share your relative indifference to relgion and God so I won’t drone on about that, but I wanted to vent about something that irritates me. My son was born with a heart defect and endured a very risky but ultimately successful surgery. Many people prayed for us (although sometimes I think that is just something people say when they don’t know what to say) and I was fine with that, but what really gets me are people who claime that “God saved” my baby or it was “God’s work”. I am not claiming that God had nothing to do with it because I just don’t know, but to say it was God alone is irritating because many a nurse worked 12 hour shifts keeping him stable, a surgeon and surgical team toiled over his tiny heart for 7 hours (not to mention the years the spent preparing) and it irritates me to just say it was “God” who healed Ryan. Heck, I like to think I had some part in it, with the hours I spent pumping breast milk and just standing by his bedside willing him to breathe. Anywasy, this may not be the time or place for this little rant, but I feel better at least having gotten it out there. I realize how infinitely lucky I am to have a baby who was healed because I know of to many people who are not and I don’t know if that is part of God’s plan or not.

    • You are not alone. This has definitely occurred to me as well. Also – and perhaps this a bit obvious – but no one ever says, “Wow. That God – he really messed up with your little one.” But, I suppose that – whether the belief is that he had an active or watchful role in the creations of children like ours – it never stretches to mistakes. Humans make mistakes. Not God.

  15. I really like your stance on this, if I may say. I’m not religious anymore myself but nonbelievers often come across as scornful of religion, and I think that detracts from the building of tolerance between them and believers. I wish more people had your open attitude.

    I think that people resort to talking about God when they’re trying to say something profound about May because what has happened to her is beyond our ability to rationalize. In fact, I think the deep need to have an explanation for events like May’s injury is probably a fundamental force behind religion in general.

  16. I have never been through what you have been through. Never had a disabled child.

    As a believer in Christ and the Bible, I believe that every time I have gone through a trial ( even the ones that were a result of my own choices) it was because God was trying to bring me closer to Him. It is not because He is selfish for my love and attention, or vengeful of my disobedience to Him or something. I really believe He loves me and wants me to be happy, and to do that by learning to rely on Him for my happiness instead of on something that isn’t strong enough or won’t last. With every situation I’ve been through, He really does give me a way out like that scripture you mentioned says: 1 Cor 10:13 No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.

    It’s not about conquering every situation in that I have power over anything, because I have power over nothing but my own thoughts. It’s not about how hard I am able to work and how much I am able to do, but how much God is able to work in my life and how much He is able to do because I allowed him to do. God does provide a “way of escape,” and that way of escape is for me to rely on God.

    And when I do that, I feel a sense of relief. It’s not always complete, because I’m not always strong enough to let go all the way. It’s a continual effort. I am a continual work in progress. In order for me to start moving in this direction I have to start to trust that there is a reason for everything I am going through. One day down the road someone else will be going through something I have experienced and will need my help, and that’s when I draw on that experience to help them through their struggle. It’s already happened, probably more than I know. That is one really encouraging thing, that nothing I go through is unique. Someone, somewhere out there has been through it, too. I am not alone. This verse was the most important one in my life for a long time and helped me through some really hard times: my deployment and all the things I faced over there, my divorce, and many other things.

    That said, I am not the apostle Paul. I do not rejoice in my sufferings: Romans 5:3–5 (ESV) Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, 5 and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit …
    Not at first. But over time, I come to realize that there is a reason. When God helps me through a situation I learn to endure in Him, and that helps produce a Godly character, and that gives me hope in God…which tells me there must be a reason. I just don’t always know what it is.

    One of your questions seems to be: Why does God allow bad things to happen to children? I certainly couldn’t speak for God. I don’t know why. All I can do is look to people like my friend who just recently lost her child at birth. Her strength amazes me, her faith in God amazes me. This Thursday will be 36 weeks since he was born, and 36 weeks since he passed. She has good days, and she has bad days, like all of us do. Bu through it all, she comes to trust that, even if she doesn’t learn why until she dies, there is a reason everything has happened in her life and that her precious Jack died.

    The closest to answer I can find is this: John 9:2–3 (ESV) And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.

    And that’s what I believe trials are about, that the works of God might be displayed in us when we choose to turn to Him.

  17. My daughter has severe developmental delays and no formal diagnosis. I often feel the way you described. I don’t know what to think about God, but I can’t imagine how this is “For the best”. Unless Katie is secretly a very VERY tough little angel who came to teach me more about myself than I would ever learn otherwise?!

    I think for the most part, people just don’t know what to say. I do prefer the “God bless” to the “I’m so sorry”… But really, I’d rather if people didn’t know what to say, they just didn’t say anything at all!

  18. My son was born with hypoxic ischemic encepholopathy too. My husband and I both come from religious families (Christian) but, like you, we aren’t very religious ourselves. People keep asking me if I blame God for what happened to my son, and I never have. It’s never crossed my mind. At the same time, I don’t find myself turning to God more than I did before either. It’s interesting to me how religious people think that religion is the only thing you can turn to when things get tough. But my spiritual life hasn’t really changed much. I talk to my family and friends, I journal and blog. That’s how I deal with my feelings and emotions. I don’t usually go to God. I guess I don’t get why so many people think that witnessing a tragedy in your child’s life should change your spiritual beliefs?

  19. I know I’m posting on an old thread, but this really touched me. I’m Jewish, and I also have a special child. I was taught that the great tzaddakim choose to be reincarnated in the bodies of special children so that they can bring down the love and light of Shamayim. Special children have a purity and joy in life that no other person can equal, and can teach us lessons that no one else can.

    If you get the urge to reconnect to your spirituality, check out your local Chabad. They will accept anyone, no matter where they are holding in observance. No judgment, no pressure, just the cultural stuff if that is all you’re ready for. See if they have a Friendship Circle group near you, where you can meet other Jewish families with special children. You can get great support, and they have activities that are appropriate for all children, including their neurotypical siblings.

    My husband is British (we live in the US now), so if you want some suggestions for a shul, feel free to email me at Rivkasmom AT gmail DOT com

    PS: Sorry! I just realized I assumed that you’re Askenazic. If you’re Sephardic, I can still get you some recommendations for a kehilah. Either way, check out Friendship Circle. They’re wonderful!

  20. First off I am really thankful for your open and honestness (not a real word sorry) and for keeping this conversation going. I am a Christian, just FYI. I don’t believe God made May brain damaged. Sorry I am having a hard time making my thoughts and beliefs come across on the screen. It seems as they just don’t sound right after I type. I feel like you want to go to Synagogue or be apart of the Jewish community (maybe I am wrong) if that is true. Then you should. May and Iuean would benefit from the community and maybe you will feel God again. I believe that faith is a journey. We all pick our own. Sometimes we are one with God’s plan and its great, sometimes we are one with God’s plan and it is almost unbearable. The same goes for when we walk away from God. The tricky part is deciefering (deciding) if you want to walk with him or not. Best wishes on your journey. Thoughts, prayers and blessing to your family. I LOVED watching May walk! Know that your whole family is thought of and prayed for often, from way across the Atlantic.

  21. This is what I believe: it was no more God’s plan for May to have brain damage than it was yours. The evil in this world is not from God. It has been corrupted by sin. Everyone is affected. God’s plan is salvation by grace through faith in Jesus, and the new heaven and new earth where all pain and suffering will be eliminated. The blessings in the midst of suffering is that May was not abandoned at birth for not being born perfect (I am from Russia and many disabled children are abandoned at birth), she knows unconditional love and has access to modern healthcare and educational advancements. You are her blessing, but it is not all roses and butterflies, and I hate that people have painted a wrong picture of God for you, however well-meaning that might have been.

  22. I do believe in God, but I wouldn’t consider myself a very religious person. I don’t go to church, I couldn’t quote the bible, and so on. I also couldn’t say if I had been through what you have what my opinion on the subject would be. I’m not sure if you have heard of this blog, but it is someone who has a disabled child and has an amazing and unshakable faith in God. It is inspiring. http://noraroseyusko.com

  23. I’m not decided on the matter of God’s intent factoring into the suffering that comes with something like this. I bristle at the idea that God would decide that a given person would be severely handicapped for life–that the plan is to set people up to suffer.

    However, I recognize that often in dealing with trials we grow stronger and, at least with those whose beliefs it fits, we can become closer in our relationship with God. I think many want these things to fit a grand plan so our suffering doesn’t seem to be in vain.

    I have epilepsy, perhaps of the worst kind (full-blown tonic-clonic seizures), which seems to be degenerative and moderately medication-resistant. I have taken or am currently taking most of the meds that May has taken. One day I will probably run out of effective medications and require drastic measures and probably be moderately (if not severely) limited/disabled. I have at least some degree of similar suffering, I have great sympathy for what you deal with.

    I have often felt that if I understood the purpose/plan for this, I could be more okay. I was confronted by a therapist with the thought, “What if there is no purpose behind this — what if just happened and that’s all there is to it?” I told him it was unacceptable. I had and still have trouble with the thought of a lack of a purpose or plan involved in pain.

    Maybe those who say God plays no role in this, or there is no God and it just happened this way, will turn out to be right. It’s a possibility. But believing that there is a God and that He has some kind of purpose for the pain I’ve experienced, and seeing what I interpret as blessings and perhaps small miracles along the way, gives me hope. I’ve lived without hope before, but having it is so much better that I’ll take the risk that my beliefs may be wrong. Maybe I can at least get some credit somewhere for trying to live well.

    Even if there’s not a higher being or great master plan, you don’t have to be a devout religious believer to find hope in the possibility that something good might come of May’s injuries and whatever subsequent pain comes with them. Maybe some hope can get us through the toughest times.

    • This is what I wish I could take from religion. I have to admit to being a bit jealous of you that you can, and that your faith gives you such hope. Best of luck with the seizure medications. In my discussions with May’s neurologist, I konw the possibilities of there being a drug or combination of drugs that will work, will narrow over time and I really hope that isn’t the case for you. I’m sure we both share the hope of new drugs and the possibility that you both will avoid any further traumas.

  24. I am a follower of Jesus and I also do not believe that my daughter’s brain cancer and disabilities are a benefit to her, nor are they teaching me any kind of a lesson. I do not want my child to suffer so that I or anyone else can learn a lesson. I absolutely hate when I hear parents say that their child’s cancer, disability, or whatever other awful thing is a blessing because it taught them what was really important in life. Let me tell you, the torture of brain cancer is soooo not a blessing! What an awful thing to say!

    http://www.faithfulmomof9.com/im-having-trouble-understanding-how-my-daughters-disabilities-glorify-god/

    http://www.faithfulmomof9.com/could-gods-best-plan-for-us-be-suffering-despair-and-despondency/

    • Well said, Sylvia. I read your posts and I am filled with admiration for you. I know the emotional turmoil you express in your posts, and also the love.

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