Letting Go

This post is one where I ask for help from anyone out there who has been dealing with medical issues with a child longer than I have. When do you stop trying to figure out what’s wrong with your child and just accept the fact that this is the way things are?

I haven’t gotten past investigation mode with Max even though it’s been over four years since he was diagnosed with Epilepsy. His neurologist keeps reminding me that everything that is “wrong” with him is a symptom of Epilepsy but I still haven’t accepted that. Because his seizures are well controlled its hard to think that everything else is still present because of it. I am constantly trying to figure out what more is lying under that diagnosis. Is he Autistic? Does he have some kind of oral sensory issue? Does he have sleep apnea which may or may not cause his ADHD symptoms? Is he on the right medication and if so is the dosage correct?

I’m constantly questioning whether his behavior at any given time is a side effect of his medications or if he’s just tired or hungry. At a trip to the science museum this weekend I actually started crying at lunch because I was so overwhelmed with trying to figure out why he was so lethargic. I know he gets overstimulated at places like that and kind of just shuts down but couldn’t let myself just accept that. I kept asking him if he was ok. Was he hot? Was he tired? Was he hungry? Did he have to go to the bathroom? Was the new dosage of medication too much for him?

When he was first diagnosed, I went into warrior mode. I read. I asked millions of questions. I quit my job and did therapy exercises with him every day. Then I got angry. I was mad at him, at myself and at our situation. I was mad at my husband for going to work everyday. And now? Now I am just sad. I’m sad for me, for our situation. But mostly I’m sad for Max. I’m sad that he doesn’t enjoy museums like his brother does and that he can’t ride a bike. I’m sad that he gets exasperated and says “I ok mommy!” after the millionth time I’ve asked if he’s ok. I’m terrified that there is something wrong with him that I’m missing but that I might be able to fix. I’m just plain sad.

I just want to let him be. I just want to have it sink in that this is just the way things are for us and that it is ok. I want to know that we are doing everything we can for him and stop wondering if I should be pushing for another medical test or therapy. I just want to enjoy him without making him feel different or sickly. I just want to feel peace.

This peaceful scene courtesy of the Harlequin Blog

 So please, if you’ve been through something like this, how did you do it? How did you  make peace?

30 thoughts on “Letting Go

  1. @Cheryl: I think her blog is exactly about “letting it go” and trying to not dwell in it? I don’t know if the name of the post gave it away.

    On another note I think there is nothing wrong with feeling this way every once in a while and hopefully others can relate. Not everyone is able to just get over it, some can.

    Lastly how about not sounding nasty with every comment, you don’t have to agree and can post but sometimes I read your comments and think “Man that lady needs a hug” or something (apparently the zanex isn’t working)

    @Kristy Ann: Thanks for sharing, most women do not share this because of responses from people above when many mothers do. It isn’t wrong to have a little Woe is me party every once in a while, not all the time but you are human.

  2. Kris-Ann you are being the BEST mother you can be — and I applaud you for how valiantly you have advocated for Max. I don’t have first-hand experience with what you’re going through, but as a mother I would imagine that it will be impossible for you to totally give up on looking for ways to make his journey easier for him. That’s what we mommies try to do, all the time – try to make the world a better place for our babies in the best way we can! The fact is, it’s in your DNA to forever be on the lookout for his best interest, just as it is for your other child, so maybe the thing to let go of is the idea that you ‘should’ at some point let go! 🙂 Cut yourself some slack, girl — you’re kicking ass!

  3. As a mother to a special needs child, I feel it necessary to offer my proverbial “two cents”, only hoping you will keep an open mind and not take offense. First off, if you ask me, your ‘why me’ attitude, when 1 in every 88 children has a disability, sounds a little pretentious. Get over yourself. It’s not all about you. You may not be a religious person, but surely you recognize that people serve a purpose in this world, and I can assure you that your son’s sole purpose in life is NOT to add to your insanity.
    I myself did not realize this until my son was school-aged. We live in an upper class community alongside many entitled children who would never even know that hardship existed if not for my son. He has taught them invaluable life lessons about patience and tolerance, and HE has made THEM better people. You go, Brian!
    Your son is his own person, stop making his life journey all about you and your heartache. Now this may sound a little too corny for you, especially if you’re not religious, but that brings me to my next point. As easily as it was for you to take on your sanctimonious, ‘it’s my affliction to educate the world’ mentality, which is, by your own account, not working for you, why not try the opposite. I was not a religious person myself, but it is much more comforting to think that ‘God doesn’t make mistakes, and he must have given me my son for a reason’, so I do. It’s that simple. I don’t go to Church or even pray, but I like to think thoughts that make me feel better about my situation, and I would guess most other people do too, unless they want to feel despair. Which brings me to my final point, some people enjoy playing the ‘poor me’ role. In fact, they justify it by saying ‘I’m not playing the poor me role, my grief is real’. Hahaha. Yes, your grief is real. Okay, we get it. So is millions of others’, but they don’t dwell on it everyday. They accept it and move on. You should try it. In short, the cause of all your grief/heartache is not your son, it’s you! And you will not move forward until you realize this. Take your Prozac and Xanex (I do!), and let it be. Sometimes a cigar is just a cigar, and sometimes life sucks and it just does.

    1. Cheryl,
      Thanks for taking the time to respond. I’m not sure you understood the point of this post (and today’s post as well) since its purpose was to ask for help in “accepting it and moving on” and “getting over myself”. I’m glad that thinking about God helps you…that’s not the case for me. I’m sorry if I’ve implied that my child’s purpose is to add to my insanity since that is not the case. My feelings are my own and I don’t blame my child for any of them. I am simply searching for the tools to accept our family’s situation and move on. I’m glad you’ve been able to do that.

      1. Kris-Ann, props to you for handling this incredibly rude and obnoxious comment so tactfully.

    2. Hey Cheryl, full disclosure, I am a fellow blogger on this site. While I think the point you were trying to get across may have been valid it was completely drowned out by judgement. What I like best about our blog is that we can write how we feel about things and other moms can relate and go, “yup, I feel that way too sometimes, and now I know it is normal.” We all go into “woe is me” mode time to time (special needs kids or not), and what snaps you out of it is not the other mom who is like, “hey get over yourself, there are starving kids in Africa,” it is the one who says, “How you feel matters, and I support you.”

  4. LJ, what a beautiful post. Kris-Ann, Sunshine Faerie is a dear friend of mine and I can attest that her son is a wonderful and exceptional boy ~ I was smitten when I first met him. These “special” kids that are coming in may not be what society deems as “normal” but they have some VERY magical qualities to them. Sending you LOVE, Dear Sister.

  5. When children have medical disorders, it’s extremely hard to know what a disorder/illness/syndrome has done to their bodies. Their brains/bodies are not fully developed, and until they are, we as mothers will never have the full picture. It’s the unknown that’s the hardest to deal with. But, disorder or no disorder, there will always be unknowns. You’re going to question your parenting whether Max has epilepsy or not. So just try to remember that whatever happens, “IS”, and it’s accepting the, “IS”, that will get you through this.

    Kris-Ann, I rememer sitting across a table from you after my son was recently diagnosed with ADEM. You told me that it will get easier. You just have to give it time. After awhile, you will find that doctors appointments will become fewer, and the time between them will be longer. I remember this so vividly because you gave me hope. Hope that it won’t always be so overwhelming. You never said the doctors appointments will ever go away, because in our cases, they won’t, but whatever you said to me, just made things easier. You gave me hope when I wan’t seeing it in myself. Thank you for that. I hope that some of the other replies give you hope too.

    I don’t think there will ever be a point where we could ever “let go”. But you’re such a great mom. Your mom proudly tells me how well Max is doing, every day. Minor accomplishments are such major milestones when you have a child with special needs. You just have to recognize the good in everything he does.

    Blogging probably helps, talking to others (especially ones that can relate to seizures), volunteering to a cause you would like to support, excercise (healthy bodies = healthy minds), and doing things for yourself can help. Once you build yourself up, you can build your family even higher.

    I truely hope you find peace.

  6. I very much relate to everything you’ve written. My son was small at birth, developmentally delayed and started having three different kinds of seizures around 16 months of age. It was the most painful experience of my life. We were getting conflicting information and a run-around from the doctor, my intuition was pulling me in a different direction, friends and family were constantly putting pressure on us. I felt like all the pressure was on me and I was terrified of missing something or worse, making the wrong decision and having to face some terrible consequence.

    I was living in constant fear, guilt, shame, pain, worry, and sadness. I would drive around and see other kids playing and break into tears wondering why they got to have a ‘normal child’ and ‘normal life’? It was hell.

    But then, in the deepest and darkest moment of that journey, I realized that I looked at and rejected all of his health and other issues because I viewed them as something separate from him, but, they weren’t separate from him — they were a part of him. And, as angry as it made me feel initially, I realized that if I rejected all those things — I was in essence, rejecting a part of my child. And as a mother, that was unacceptable to me — I love my children with all my heart and I realized that I needed to love him exactly as he is and I needed to find a way to love (or at least be at peace) with all of his conditions, quirks and delays, in order to fully love my boy.

    I then looked at my biggest fears. The fear that I wouldn’t do enough, would make a mistake or would miss something and my child would end up permanently disabled or lose his life. It was more than I could face and yet, when I finally faced that as being my fear, it somehow lost some of its intensity and I realized that sometimes things are bigger than us and we don’t always know why, but for some reason, I was given this child and I was given to him. I just knew somehow, we were meant to be on this journey because we would be the perfect match for what we both needed to learn and experience and it would be for the best.

    And when I shifted my thinking and let go of the fear, I became much more peaceful about his seizures and everything he did. I realized that I had been grieving (and gone through the stages of grief denial, anger, bargaining, depression and acceptance). I had been grieving the loss of ‘normal’ – grieving the loss of the way I envisioned my parenting journey to be – and most of all grieving the loss of a “normal” and healthy child.

    After shifting, everything became easier. I allowed my son more room to flourish and be himself and that gave him room to grow and be better in many ways. It also allowed me to hear my mommy-intuition a lot more clearly and I KNOW when I need to take action or do something and when it’s just fear.

    Always listen to your mommy-intuition. It will guide you to help your child in the best way possible. You WILL know what is best to do. You WILL know what is fear and what is an MUST to pursue. You WILL always be the best advocate for your child. The two of you are together in this for reasons that are greater than you could know, but you are both stronger than you realize and this is a great gift to you both.

    I am wishing you much love and peace on this journey.

  7. My son has never been ‘normal’. He becomes easily overwhelmed, doesn’t like doing anything most other kids (including his brother) like to do and is just a different kind of kid. He gets totally drained by big crowds, rooms with a lot of stimulus and ‘outings’. I always thought there was something ‘wrong’ until I met my partner and he is exactly the same way!

    I remember one time when my two sons and I went to a birthday party. My ‘unique’ child sat on the sidelines, seemed bored and awkward. In the car on the way home, I said, “I’m sorry you didn’t have a good time.” He replied “What? I had a great time at the party!” It opened my eyes to see that I was making it all about me and projecting myself on to him — and the whole while, he was perfectly happy.

  8. Kris-Ann, so sorry you’re going through this. Wish I had advice, but I’m glad you got so many insightful comments and that there is a community here to lean on.

  9. My heart goes out to all of you great moms. I couldn’t even begin to imagine what you are feeling, but I can say keep your heads up and take time for yourself. Each day brings challenges but remember the loving family you have and enjoy every minute of it.

    While pregnant my husband and I worried if we would be in a similar situation. I was born with a heart condition that required surgery when I was a toddler as well as numerous doctor and hospital visits from birth on. I still see a cardiologist yearly and may still have more surgeries in the future. I was told there is a chance any child of mine will also have a heart condition. This lead to numerous tests while pregnant. We have counted our blessings each day that your daughter is 100% health, but when we decided to have another we will be going down the same road. I know if it does happen it will be hard, but we will do all we can for our children and each other.

    I know my parents have told me what helped them through all the hard times with me was great doctors, frineds, and family. They reached out to anyone and everyone they could and took any help they could get.

  10. This is a great post. I actually relate to this a little, on a much smaller scale, (I’m emailing you after these crazy boys are sleeping tonight), but wanted to add focus on what is good and what is working well. All kids have amazing strengths and things to show us. You’re doing a fantastic job keeping on top of thing and making sure any deficits are addressed, so I say spend some time patting yourself on the back and focusing on his strengths 🙂

  11. Jim. so glad to have met you in college where you were proving doctors wrong! And to think…you use your “voice” every day now at work. Such an inspiration. As an aside, remind me not to join you for an evening out to dinner 😉

  12. Another courageous and loving post Kris-Ann.

    Reminds me of two things:

    1. My on going struggle to accept we are a family of three. I’m damn proud of my little family and though it’s not what Chris and I planned, we will move forward and we have so many great family memories to make. I know we are blessed and I need to celebrate the family I have and not dwell on what I thought it would be at this time last year.

    2, I really can personally relate to Max. I don’t have the epilepsy issues, but I’d bet if I grew up today instead of the ’80s I would have been at least tested for autism. I had a lot of social anxiety and got overstimulated in crowds. I threw up on my dad anytime we went to a restaurant.

    I had big speech and language problems. Early elementary teachers told my parents I wouldn’t go to college. A speech therapist at Webster Hill famously told my parents I’d be a janitor when I grew up.

    I really only had one or two friends I hung out with outside of school right through high school.

    In 9th grade I took a “social pragmatics” class at Ben Bronz. I had to be taught to look people in the eye, shake hands and how to join a conversation.

    Fast forward to when you met me and somehow social anxiety turned into cool aloofness. As you know, I did graduate college and in four years.

    Max has time to conquer the science museum.

  13. Rebecca,
    Max had infantile spasms so we’re familiar with TSC. Thank you for putting into words exactly what it feels like to have a child with Epilepsy. We’re moving to CT in a few weeks and one of the first things I’m doing is joining the Epilepsy Foundation’s parent support group.

  14. I have not been dealing with epilepsy for as long as you and your family, but I have learned a lot in the past 2 years and felt compelled to comment. First, a little background. My daughter was born with a rare genetic disorder, Tuberous Sclerosis Complex (TSC). A disorder that caused benign tumors to grow in major organs–heart, skin, brain, kidneys, etc. Ninety percent of people with TSC experience seizures and up to 40 percent suffer from a catastropic epilepsy, ie. Infantile spasms and/or LGS. She was diagnosed before she was born. So, we knew it was like a ticking time bomb waiting for the seizures to start. I, like you, quit my job immediately. She had her first seizure by 4 months old. Since then she has had hundreds. Her epilepsy is consdiered medically intractable. Though, she is currently well controlled on two medications and the ketogenic diet (knock on wood!!)

    I have experienced much of what you describe–the anger, the sadness, the desperation, the worry. I am not sure what type of epilepsy your son was disgnosed with or if the doctor has determined a cause, so in that sense our situations ccould be much different. I can imagine if the cause is determined as idiopathic, then it might be much more difficult to accept and just “let go” and trust that you are doing everything you can. But, I do know the feeling of wanting to make your child “all better” when “all better” is currently impossible (there is no cure for TSC). There is a constant deep ache. An anger that simmers under the surface–“Why her? Why our family? Why can’t I do more? Why can’t I take this burden away?” The hidden resentment for having to give up so much of yourself–your job, your freedom, the carefree attitude you may have once had. And, the worry. It is constant with an epileptic child. Any odd movement, any slight pause you think–“could this be a seizure?” And with epilepsy it is not just the seizures, it can be the accompaning developmental delays, behavioral issues, learning difficulties, etc that can be just as difficult. Your life is spent in doctor’s offices, in therpay appointment and counting–you count seizure, you count the time it lasts, you count the time since the last seizure, the last hospitalization, the last dose of emergency medication. It is difficult to “let go” when there is so much you need to hold on to, because it is your job. And from eveything you have said you are soing your job marvelously. But, I know that doesn’t make it any easier.

    What I have learned is that my family has to find a way to live through the chaos. I have learned what to let go of and what to hold on to. I have learned that I need to let go of the anger, let go of the fear, let go of the planning for the future, let go of the dreams I had for my daughter’s future when I had never even heard of TSC and I need to live one day at a time. Sometimes one minute, one second at a time. The anger and fear paralyzed me. The planning and replanning when things just couldn’t work the way I had wanted was maddening. We now have new dreams. We let the path take us where it may. And we try our best to steer that path when we can. We bring her to the best doctors, therpists, etc. We research all we can. And when something doesn’t sit right with us we seek out answers that do–new doctors, new treatments. We fight like Hell for what we can change, imprve, et and we try to leave the rest. Our daughter couldn’t walk until just recently as a result of her epilepsy. At first when I would bring her to a playground or playgroup and she would crawl around and the other parents would stare I would leave or try to get her to walk when she clearly couldn’t. I have learned to just say screw it, let them stare. They don’t know any better. They can think I’m a bad Mom for letting my kid crawl around on a playground, because I know that what I am doing is being a good Mom–giving her every opportunity to live a wonderful life in spite of her limitations. So, I let that go. I stopped pushing her to do what I thought would be fun and started to let her decide what was fun for her. Because, I found that made it fun for all of us. Lastly, I learned to lean on others for support. Those who know what it is like. There are many online support forums for parents of epileptics–the Inspire community is a good place to start. And there are supposrt groups through The Epilepsy Foundation.

    I also want to add, listen to your gut. Lethargy in an epileptic child is something to be concerned about. Not something to “let go.” I would suggest discussing with the doctor, because unless he is overmedicated or just starting a new medication then he should not be truely lethargic. Lethargy could be a sign of a subclinical seizure or simply the first signs of illness. Thus is the difficult with epilepsy. Many variables.

    Best to you, your family, and Max,

    Rebecca

    1. Rebecca what a thoughtful and heartfelt response. Your comments made me tear up. You sound like one strong mom and we appreciate you taking the time to share your story here.

  15. Thanks for all the comments and support. I do want to be clear that I fully trust and appreciate our neurologist. We’re just in experimentation mode with medications and dosages, which is standard operating procedure for these types of issues.

  16. Kris-Ann, I agree with Robert. If you suspect your son’s medication could be wrong or that there are underlying issues, you should consult another doctor for a second opinion. Your doctor will understand.

    My daughter had a chronic bowel issue that my doctor kept saying was “normal” and that it would eventually go away. After two years of battling with her problem I finally said enough is enough and asked for a second opinion. The new doctor took tests and referred her to a specialist. She’s now on the right track to recovery. Do it for your own peace of mind. Once you know you’ve done everything to find the truth you can hopefully relax a bit always worrying if he’s really alright .

    Behavior-wise, my son had an over-stimulation disorder when he was younger. With lots of support from the special education teachers at school we learned to work through those issues. He did need to slow down much sooner than his friends and sometimes needed a quite place to go for about 5 minutes to regroup. I too felt bad that he was not participating in the same things that our friends’ kids were but it turned out that those breaks did the trick. You just need to find out what works for your son.

    And remember, just because he doesn’t want to do what the other kids are doing at the same pace that they are doing it, he will most likely still have fun in his own way at his own pace once you’ve relaxed on the worrying.

    Peace,
    Denise

  17. Kris-Ann, I read what you posted so here goes. First, what has happened is done please move forward. Epilepsy and most other medical conditions do not mix well. Life runs in stages. Building you life is like building a home. You must pour a firm foundation because if you do not your house can fall no matter how much you work on it. Please take firm but mild steps to help Max and at the same time do not forget the rest of your family. As far as your doctor, if you feel the way about him as I am reading go to a different one. Life it too short to live in disaster mode. Please take it one day at a time and when you feel something coming on just walk away and go to where no one can hear you and scream, curse, whatever and get it off your chest that will be a new way of “Letting It Go”, then take a deep breath and go back to what you were doing. All the best, Robert

  18. Reading this post makes me wish I could reach through the computer and give you a huge hug. You are an incredibly strong woman Kris-Ann, and clearly are a great mom.

  19. I cannot even pretend to know half of what you go through everyday, but just want you to know we are here for hugs and moral support when you need it. It can be so hard taking care of everyone else all the time and you may need someone who you can talk to, even professional therapy, to help you sort it all out and come to whatever peace you need to get to.

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