Saturday, May 4, 2013

Reflections of Anger and Love...

Today I'm feeling a little mad.

It's easy to direct this anger at things that don't really matter.

Like a few days after Gavin's funeral we realized that Brian's fish, "Fishie," had a bulging eye.  The pet store told us he had a 50/50 chance of either losing his eye... or dying.  Yes, I realize the cruel similarities to Gavin's life... and yes, I immediately thought, "Brian's fish dying is the last thing he needs right now!"... and yes, I am doing everything possible to save his eye - or at least his life... and yes, I immediately bought a "stunt Fishie" which is currently living in our bedroom in case the real Fishie doesn't make it.  But I was pretty freaking mad.  I don't need this.  Seriously.

Like a week ago when I got an email from a woman asking if I'd like her to write a guest post on my blog so she can offer "travel tips" to my readers and offer her services.  Or the woman who posted a "work at home" business on my Facebook page and, when I contacted her told me "It's a free country, bitch."  These people make me angry - only looking at high numbers and making impersonal business decisions at my emotional expense.  It makes me mad.  It makes me feel used.  And it hurts my feelings.

Like right now.  I'm sitting at the car dealership.  Since the funeral, I've been driving around with my dashboard lit... probably running on fumes.  It was the last thing on my mind.  I hate being here in the waiting room while kids play with the toys in the corner and a girl is chatting happily on the phone and people are laughing at the shared TV on the wall.  I want to stand up and scream - STOP!!!!!!  My little boy is dead!!!!!!!  STOP IT!!!!!!!  

Like back in March of 2012, when Gavin had his first febrile seizure (and only seizure until this recent one).  It was the scariest experience of our lives at that time.  Based on that, I created Emergency Kits for each child with instructions on what to do in case Gavin had another seizure and we weren't home.  It contained his liquid Diastat and I trained everyone who would watch him how to use it.  I was proud of those kits - and it made me feel better if we were to ever have an emergency in the home again.  But then I found this comment under that post:  

Holy cow! Can we say overboard????? Gavin had a febrile seizure from the high fevers. You just need to chill and move forward. There is NO way I could parent like you. My kids would have no life or independence.

That comment popped into my memory as I drove to the car dealership alone this morning.  I started to cry... and then I got mad.  I wish I knew who made this comment.  I'd love to call her - or knock on her door and say, "Hi.  Remember me?  The Mom who went overboard after her son's first febrile seizure? Yeah... well, he had another one.  And he died."  And the rest of what I would WANT to say would stay safely in my mouth.  Maybe.

I'm just mad.

But I know - very well - that it's misguided.  I know - very well - that it's a natural part of grief.  I know - very well - that it's healthy when it's healthy... and unhealthy when it's not.

I know that it won't bring Gavin back.  I get that.  But I'm still feeling mad.  I didn't feel mad yesterday. I may not feel mad tomorrow.  I'm not mad at Ed or Brian or you.  (Unless you're the lady I interacted with.)  I'm not mad at God.  And I'm not mad at me.  I'm just mad.

I think, maybe, I'm feeling pissed because I worked so hard... I was so overprotective (and proud of it)... and I tried everything to always ensure that Gavin was happy, comfortable, healthy and protected.  Some things were little - like never allowing scents in our home, including detergent, so he wouldn't get a skin rash.  Some things were important - like not allowing people to wear shoes in our house and asking everyone to wash their hands.  I considered it to be disrespectful to walk around in dirty, germy shoes on the floor where Gavin spent most of his time crawling around.  And I was proud that he (and Brian) were rarely sick.  Neither of them had ear infections until just this year.  And some things were big - like never leaving his side during hospitalizations and getting very involved in his medical care... down to knowing that everyone would know what to do in case of another seizure.

But in the end, I couldn't help him.  I was relegated to a corner of a room as I watched in horror.  In that moment it didn't matter about detergent or emergency kits or washed hands or how "comfortable" he was.  I was useless in those moments.  And I think that is what makes me the maddest.

Today I am mad.  I don't need you to talk me out of being mad.  I don't need you to worry that I'm mad.  I'm just writing that I'm mad - right now - and that's okay.  It just is.....

It just is.

Today when I look in the mirror, I see someone who is mad.  But as I obsessively pour over the thousands of photos I've taken of Gavin... and the stack of "selfies" that I took so I would get pictures of us together... I see reflections of love.  
And I'm definitely not mad about that.




81 comments:

  1. Dear Kate,
    It is ok to be mad! I am praying for you and your family and the little fishie! Take time to heal, in YOUR time, not what anyone else says.... You were an amazing mom!

    ReplyDelete
    Replies
    1. U have every right!!!!!!!! I think u are a great mom....i think u did everything right..and i honor you and Gavin would too....u did the best any mom could....after reading so many of these sweet blogs and hearing all the sad ones that dont make it i get mad...not mad @ u or even those left behind...but i get mad @ me-for the times i sit on my phone when my daughter wants me to read to her...or when a lady in the dthru lane orders the food and the kids beg to eat in but mama doesnt have time....or when my lil boy falls asleep but wait i never kissed him good night first....why do we take so many precious moments for granted? Why do i ? That saddens me..and angers me...i have learned so much from your precious Gavin. Im sorry others still neglect the time they DO have...im sorry I do.... I want to fo better...we all should!
      God bless you.

      Delete
  2. ((hugs)). No will ever know what it was like to be Gavin's mom but you. No one will ever know what it is like to be Gavin's mom without Gavin but you. So no one ever...I repeat...EVER...gets to tell you how to feel about that. How could they? They don't have an insight into it. They aren't experts. They can tell you how they feel but it's only their opinion. I pray for peace for you all, Miss Sara included...every day. ((hugs))

    ReplyDelete
  3. feel what you are feeling

    ReplyDelete
  4. My name is Melissa and I've been following your blog for a little over a month now and I want you to know that I can FEEL your love for all of your children. I'm mad with you, but obviously not in the same way, because no body as special and wonderful and beautiful as Gavin (and the rest of your family) should ever have to endure what you've endured. I know nothing will help right now but also please know that you have millions of people who love you and your family and especially your precious Gavin. He is on my mind and forever in my heart.

    ReplyDelete
  5. Mad is good--it is part of grief, but it is also different from sad. Everything you are mad about seems logical and healthy to me. So sorry you had to deal with "the bitch" lady. Man--cannot believe people. We are all mad with you!

    ReplyDelete
  6. So much love in every photo and I can not even imagine the level of mad that must be in your soul right now. I am only certain mine would be equal could I not tuck one of my babies in bed tonight. No words can cover the amount of sorrow, prayer, and love I send your way and feel in my heart.

    ReplyDelete
  7. Well mommy sometimes we just need to be loud and proud. Proud for all we tried even if we failed, and loud because we want it all and lost because we did not get it. SO yes be mad its real and its justified. I wish you peace today.

    ReplyDelete
  8. You get mad, Kate. Febrile seizures are scary as can be. And any mommy who has the brain (amidst everything else you are dealing with) to get a stunt fish . . . You're a freaking hero to thousands, girl. It's a free country? OK, so I freely choose to defend YOU. And I'd really like to chat with her in person, if that dope is local (She's got my Philly/Irish/Italian up.) The anonymity of the internet is NOT a good thing. So, you get mad! You'll be glad again later. Meantime, got your back.

    ReplyDelete
  9. So much of what you say sounds familiar to me. My youger brother died at age 27 from a head injury he got while snowboarding. He was on life support for about 5 days before they could declare him brain dead and donate his organs. I know, totally different circumstances. But I remember feeling dissapointed that they were not able to use some of his organs. I remember going to the grocery store and feeling baffled that people were interacting with me like it was an ordinary day. I felt like saying "Don't you know my brother is dying? Can't you tell just by looking at me?" I was angry with him for not wearing a helmet. (It might not have made a difference, but still.) And I vividly remember going back home with my husband and kids, saying "I'm not ready for life to go back to normal yet."
    You are still handling things graciously. Even if you get mad. You keep doing what you need to do and thank you for sharing Gavin with us. Prayers for peace and comfort for you and your family.

    ReplyDelete
    Replies
    1. when my Dad died he was at home with us (3 year battle with Colon cancer) I had to get cat food (of all stupid things to go to the grocery store that week!) and when the teller kicked me out of the "10 items or less" line because he counted each can of cat food as 1 item I nearly lost it. I felt exactly the same way!!

      Delete
  10. ((((((((((hugs))))))))))

    ReplyDelete
  11. We're mad for and with you, sister. Sending love your way.

    ReplyDelete
  12. Ann Dillon TannousMay 4, 2013 at 12:26 PM

    What is wrong with some people?!!!

    I am glad you got angry and expressed that anger. Although it wouldn't be good to just be angry all the time, it is also not good to keep it bottled up inside with no release.

    That woman with the ad post sounds like a disturbed individual. I would ignore her; she sounds like she is more than a bit crazy.

    Re the other woman, she probably still follows your blog and will read about poor little Gavin, and probably realize how wrong she was and probably feel ashamed.

    ReplyDelete
  13. Ann Dillon TannousMay 4, 2013 at 12:30 PM

    And prayers for Brian and his little fishie.

    ReplyDelete
  14. G-d bless you & your family. Your sharing helps me deal with "stuff" in my life. We will never meet, but please know, I appreciate your willingness to share with anyone who listens...or reads. There are many, many selfish people in our world, looking to capitalize on others' misfortunes.Karma....

    ReplyDelete
  15. Rock on with your mad self!

    ReplyDelete
  16. I'm mad too! And I'm mad about those comments made to you! Especially the woman who said she could never raise her kids like you. Well, guess what? She's right! She couldn't fill your shoes in a million years. And I hope to God her kids never need anything extra.. because obviously she wont be able to handle it.
    Yes, I'm mad. Really mad. Mad that life can be unfair and people can say stupid things. God Bless you all!

    ReplyDelete
    Replies
    1. Ann Dillon TannousMay 4, 2013 at 12:58 PM

      Well said.

      Delete
    2. I totally Agree with Caren. I wish I could be half the mother you are!

      Delete
  17. Kate...I started following your blog just as Gavin entered the hospital this last time. And I have read a large portion of your previous entries now too. You did everything "right" for YOUR family. And you deserve to be mad right now. Life isn't fair and sometimes it sucks. This is definitely one of those times! Just know there is a lot of understanding out there (even from those who haven't been thru what you are going thru). We are here for you to vent, cry, brag about your special kiddos ( all of them! :-) ).... Hugs....

    ReplyDelete
  18. Kate, Peace be with you. This makes me think of my sister who just lost her husband after a bone marrow transplant failed. She tried several times yesterday to start her lawnmower, eventually she went into garage got Gene's sledgehammer and started beating the mower to pieces. Grief SUCKS !! Prayers and Peace be with you. You have every right to be angry,sad.

    ReplyDelete
  19. You BE mad! Of course you are angry. You'd be a nutjob if you weren't.

    Just don't let it consume you and ruin your beautiful spirit (it won't). Know that it's a phase and that good will overpower bad.

    And know that there are some many people inspired by your spirit whether it's thankful or angry. :)

    XO from MN
    Tricia Lorntson

    ReplyDelete
  20. Oh Kate. How I love your insides. I, too, have been "mad". I mean, mad. It can be scary from the outside. But it is soooo good for you. I'm glad you're mad. That you are feeling your feelings and not deciding which ones are acceptable. Girl, you DESERVE to be mad!!! (IMO, you can be mad at God. He can handle it.) You have done EVERYTHING for your child. And you are sharing your insides with us. It is abhorrent that someone would take advantage of this forum. I'm glad you know that 99% of us who read your blog and fb honestly care for you and your family and are holding you in our hearts. You are a warrior, Kate. And I'm so glad that I found you. Gavin made a difference in my life, too. Thank you for sharing him, and your family, with me. Big love to you and God bless you.

    ReplyDelete
  21. I am so very thankful that you have all of your pictures, videos, and "selfies" (never heard that term, but I like it) that will give you untold hours of pleasure and I am sure some pain, too. I haven't been as good as you at documenting my kids and grandkids lives, but I am going to try to do better. What a legacy you have to enjoy as you look back on sweet little Gavins too short but very awesome life. I hooe they give you hours of pleasure. You deserve it! It's also ok to be mad, but you already know that. In fact, I'm sure therapists will tell you its ok to do whatever you need to do to get through these horrendous days. Those of us that love you and have been here for years will still be here, whether you are mad or not. That's what friends do. :)

    ReplyDelete
  22. You have every right to your feelings. It is actually so healthy that you are mad and can express it.

    You are a wonderful mother and honey I am mad for you.

    You are touching more lives than you know... you and Gavin are changing the world...

    Some suggestions for getting out and expressing some anger... I love to throw things... ha, but that isn't always the best. Maybe take a kickboxing class? or get a punching bag.

    Or maybe take a ceramics class. Throwing and pounding some clay would be great therapy. If I lived near you, I would bring you some clay. heck, if you want I would drive the distance and bring you some clay even now. If you want.

    Throwing some paint on a canvas might be nice too..

    Can you tell I studied art therapy?

    Anyway, Kate... if there is anything I can do, I would love to do it for you.

    But for now. be mad. write. tell us you are mad. do whatever you have to do

    I would be mad too.

    I am so sorry Kate. You are loved and appreciated by more than you know...

    You are in my thoughts and prayers!

    ReplyDelete
  23. I'm so sorry! People can be so awful and you have every right to be mad. You are right that this is natural grieving and its important that you make it through all the phases or you will remain stuck. I can understand while you feel so upset, you worked so hard to have control over your sons problems and you are probably feeling like you failed even though you didnt. We can try as hard as we would like to help our kids, and control things, but some things are completely uncontrollable and hit us out of complete nowhere that you have no way of preparing for. Gavin was doing so well and you were doing so well and then boom, your life changed forever. I have not experienced a death of a child but my child is experiencing many of the things gavin experienced and I have a masters in mental health counseling and working on a phd in health psychology so I do have a lot of understanding of how you are feeling. I really hope you can be happy again soon and that people stop making you angry or hurting you and your family. I will continue to pray for you all. :)

    ReplyDelete
    Replies
    1. Oh and btw, I do not think you are or were an overprotective mom at all given the circumstances. Maybe for a mom who doesnt have a child with health problems it would seem a little over board, but for those of us with sick children it is a necesitty! I work very hard to protect my soon as well due to his weekend immune system. He throws up daily even whens hes well, so being sick makes it 10x worse and he cannot afford to lose weight. People need to shut their mouths with their negativity unless they have walked in your shoes.

      Delete
  24. I just laughed at your belief that the need for, handwashing, no scent and no shoes in the house rules, made you overprotective. We have those rules and I have no Gavin so that must just make me a total freak. LOL
    I admire you for calling the nasty lady, I wouldn't have had the nerve. GO KATE!

    ReplyDelete
  25. I'd be pissed off too. You have every right. You were dealt a shitty hand, and so was Gavin. I hope you feel better tomorrow. I hope one day you can breathe again.

    ReplyDelete
  26. Dear Kate- You are entitled to be mad. You can scream at the world right now, and I'm sure that anyone with a heart can understand you are just MAD not at anyone or anything specific....just plain PISSED OFF. Hugs to you my dear, and your family. AND if I met up with anyone that did piss you off - I'd punch'em in the nose for you! :)

    ReplyDelete
  27. It's ok..it's ok that your mad. I would be mad too. At everything. Especially at the ignorant people that post heartless things on your pages with no thoughts to anothers feelings.

    That is what would keep me from even blogging or sharing any of my thoughts. I am not strong enough to handle the negativity that would come along with it. So kudos to you warrior, for carrying on and using your blog as your therapy. All while sharing with those of us that feel your pain, and trials. Your blog manages to open all of our hearts to you...and then this compassion we feel spills over into our own lives, making us all better human beings.

    So carry on, warrior! I thank you for your honesty and ability to share your beautiful family with all of us.

    ReplyDelete
  28. I remember when my husband was in a coma due to a traumatic brain injury that it seemed like all the world was in slow motion while I was running at warp speed. You know what? IT MADE ME MAD! I wanted to yell at these people, "MOVE! I have to get places. MY HUSBAND'S IN A COMA AND WE DON'T KNOW IF HE'LL LIVE!"

    So I totally get your madness.

    Go ahead and be mad. It's okay.

    ReplyDelete
  29. I know I would be mad and it's okay to be mad! Our world is filled with people who are unable to feel compassion in their hearts. It drives me crazy. How can people not put themselves in the shoes of others and at least try to comprehend your pain. I care about you and my heart hurts with you and for you. ((HUGS))

    ReplyDelete
  30. God bless you and all your feelings Kate! My son, Lucas and I pray for your family every night! We'll add Brian's fish to our prayers too!

    ReplyDelete
  31. Praying that Gavin's love will surround you with peace in the days to come. I am so sorry for your loss.

    ReplyDelete
  32. I wish I could find the lady who said"overboard" for you!!! Thanks for being so honest about being mad!

    ReplyDelete
  33. I've been told over and over to cut the chord my sons 19, Im a mom that's over protevtive too a helicopter mom...I don't care call me what you want. I love my child and have only wanted what's best! So you rock on with your over protective self and do what you need to do for Brian and don't worry what people said in the past about you when it comes to Gavin you have always done what's best for your children!

    ReplyDelete
  34. You be as mad as you want! You have every right and nobody has the right to tell you how to feel. I'm glad you are able to express your feelings of anger like this, it's healthy to be anger but it's also healthy to get it out. I am praying for you and your family. <3

    ReplyDelete
  35. Kate, I remember when my mom was in the hospital dying from cancer. My sisters and I stayed round the clock at her bedside. We all had young children however my boys were the youngest at that time. I remember after my mom who was.... MY BEST FRIEND...was no longer in my life. I wanted the whole world to just STOP!!!! I also got just MAD off the charts on a scale of 1-10 there was not chart to register how MAD I was !!!! I found my self going to the phone and actually dialing her phone number and then throwing the phone and actually breaking my phone. I took the song book in church one Sunday and threw it on the floor because her favorite song was being sung and I was so MAD I threw the song book on the floor and ran out of church and just cried for hours. My Mom died in 1979 and next Sunday for Mothers Day I will still cry for my Mom and I am now 61 y ears old and have 3 grandchildren. I love my MOM now just as much as the day she died in 1979. I'm not MAD now but I'm still SAD because I miss her everyday. Grief is very difficult and there are moments in my life that I still feel this rush come over me and I just have to let it be....My MOM is still my very best friend and no one can ever take that away from me. I feel her with me so many times just when I need her most. Gavin will be there for you too Kate....right at those moments that you think you can't go on any more ...he will help you and this is how you will know....every thing is going to be ok..... all my love, your friend from Minnesota Janice Kay

    ReplyDelete
  36. Sometimes God slaps us hard with our human limits and it hurts like hell...and it makes us furious. I think of the mothers I have lived life with who watch their children get swept away by addiction. In the end we realize we are not in charge. Sometimes we say thank you God, take this one please and sometimes we say what the hell? Why?

    ReplyDelete
  37. Dear Kate,
    Your raw, honest words have a deep and profound impact on me. I thank you for being willing to share these very personal experiences and feelings with strangers. You (& Gavin!) are helping moms every time you post an entry. I would do anything to relieve your heartache for even an hour.
    Thank you from the bottom of my heart, I look forward to "Checking on you" each day.
    Sending you Love, hugs and prayers from WI

    ReplyDelete
  38. I have been reading and crying. Gavin has touched my life if only to hug my littles a bit more and take moments to show just how much love is in this world for them. Even though this entry was about you being mad all I could feel was the love, because without all that love there would be nothing to be mad about.

    ReplyDelete
  39. Dear Kate,

    It's precisely those "little" things you did (that other people might have thought were overboard) that helped Gavin do so well for so long.

    Been there, done that, and am still doing it.

    I understand the anger at the utter unfairness of it all, too, although my own situation was on a vastly smaller scale than yours. I miscarried my first, and I was angry and resentful at EVERYTHING, from the slow, sad music they happened to pipe in while I was on hold for my doctor for 20 minutes to the fact that the SUN was shining--how could the sun POSSIBLY shine while I was mourning for my baby???).

    And I was so furious at God for "allowing" this to happen--but even angrier with people who would tell me "It's God's will, dear." (Interesting, though, that not ONE of the priests, rabbis, and ministers I've spoken with about grieving has ever said that it was God's will, or even part of God's plan...hmmm...)

    Anyway, I hope all the posts from those of us who care so much about you might help to make up for the posts from the insensitive clods.

    ReplyDelete
  40. Hugs and prayers Kate. You have a right to your anger. Many us following are praying and love you, Ed, Brian and Gavin. Let it out!!! If people have a problem they need to BACK OFF....

    ReplyDelete
  41. Ann Dillon TannousMay 4, 2013 at 4:32 PM

    I found that post on March 13, 2012 from the Holy Cow person. Of course it is anonymous. But so many wonderful posts from people, including your doctor, defending you! It was so nice to see that good people so vastly outnumber the cruel ones and the idiots!

    ReplyDelete
  42. Everything that you did to protect him and keep him comfortable may not have mattered at the time of his death ... but it DID matter during the 5 1/2 years that he lived! You did an exceptional job making sure that he was happy and well cared for during the short time that he was here! THAT is what matters!!!

    ReplyDelete
  43. Be mad. It's healthy. I was angry at my Nana's funeral in January. I couldn't believe that people were asking me questions about my schooling and what kind of work I am looking for while my Nana was lying in a casket across the room. I was mad and confused. I felt like there was something wrong with me since I wasn't enjoying tea and catching up with family. I had to be mad. You be mad as long as you need to- you're doing the best you can and you're doing a wonderful job with Brian :)

    ReplyDelete
  44. I understand your mad! Loving, really loving, is hard. All you did - that was your loving in actions. You are far from alone, Kate and, as much as there are the people out there to learn, there are the people out there that know, some wondering where the other people are that know - enough of them, anyway, to be real with when even being real, loving, really loving, needing it from others is so hard. Hugs to you ....

    ReplyDelete
  45. No one knows what you're going through unless they walk a miles in your shoes....!!! Those who are using your page for their own selfish gain have no right even reading your blog. You are and will always be an amazing mom and person; someone whom I admire and whose family I have learned alot from in this short time. You have every right to be mad!!! We are all praying for you! xo

    ReplyDelete
  46. Be MAD!! Be angry! Be furious! Throw a few more boxes against the garage! Scream at the sky, the walls, and the people walking by. Yeah, they'll look up and wonder but that is a good thing too. Your child was a gift to you and to us and he was stolen away. A gift was stolen right out from your arms. I know God doesn't promise tomorrow but we do grow to expect it. When you've screamed as much as you can, thrown as much as you can... God will still love you, Gavin will still love you, Brian will still love you, Ed will still love you, and we will always love and embrace you.

    ReplyDelete
  47. You are amazing.

    ReplyDelete
  48. Kate, for every 4 idiots leaving stupid messages for you, there are 4000 of us right behind you knowing you have always done right by your family and for Gavin. We're mad at those people, too! You've made a lot of friends. Most of us you will never meet, but all of us praying for you all without ceasing.

    ReplyDelete
  49. Holding space for you, dear Kate. Hugs and prayers for you and Ed and Brian.

    ReplyDelete
  50. Kate, I've been following your blog for a couple of years now and have grown to love you and your family. When I heard the news of Gavin going into the hospital and his passing, I was devastated. And honestly so angry this could happen after everything he and your family has been through. Please know that he is and will always be my superhero. You truly are such an inspiration. I am not a mother myself, but when I am, I can only pray I am as caring and loving as you are. Praying for you and your family!

    ReplyDelete
  51. I was wondering when you were going to get mad. As I've read thru your posts and watched videos, I would think to myself, how unfair! I was mad, mad that such a special and innocent life was taken. He had gone thru so much. And you,and your family!
    I thought if I'm angry she has to be angry!
    Angry at the circumstances of it all.
    But I know and I know you know God has his reasons. Bad things happen to good people... really really good people! And it "sucks"!!
    You are such an inspiration to us all.
    you are humble, brave, gracious and understanding. Your a loving wife and mother.
    And yet you have lost, lost things in your life that are to most of us unimaginable!!
    YES!!! DANG IT!
    ITS OK TO BE MAD!!

    ReplyDelete
  52. I am so sorry for your loss. I feel a bit of your pain. Just a bit at this point, and some of that frustration and anger. I too have been the mom that people get needlessly angry about, who, if I had my way I'd be with my adopted daughter 24/7, but she has to go to school and I work. Something was wrong. I kept taking her to doctors and they said it was unknown, it was nothing and I was unreasonable and didn't know my fussy baby well enough to know when she's just having a bad day - listen doc Tor (my daughters words at 2) she could talk a blue streak around you with a larger vocabulary, but she can't do anything but cry for mama and she can't seem to see right now so.....etc. I felt she was having a seizure. Now I know it was a stroke. 7.5 years of pain and sadness, worry, constantly trying to figure out what was wrong and having everyone say I was making it up. Well this week she got her diagnosis - she has moyamoya and the blood flow to her brain is almost completely shut off and she needs multiple brain surgeries as soon as possible. Am I angry, yes. Not necessarily at anyone but generally angry. Why did she have to have this, why did we have to go through so much before the doctors would listen to me at all? Why would they not refer me for 6 months to the center she needed to go to? She had to grow up enough to say "I wants definitive answers" about my condition and to start demanding to be taken to yet another doctor because she knew something wasn't right - she wasn't like the other kids and it wasn't getting better. Personally I think it is a failing on the part of our medical system, too little time, too little credit given to parents who see the child daily and notice changes, too little credit given to the child who can tell something is wrong. Too easy to criticize, too easy to provide a panacea. Thank you for your assistance as well. You have taught me some things about hospitals and this process that I will need to know to make my daughter comfortable if she does not die of a stroke before she can get surgery.

    ReplyDelete
  53. Kate: From weeks ago I read your page, go to facebook and keep your family history. Could not write anything, sorry about that, there was no words I could say, just crying and praying all the time for you and your beautiful family. At the same time the angelic face, sweet and beautiful Gavin is unforgettable for me. I am a mother of three wonderful children, my second son was diagnosed with autism shortly before his five years, I get angry a lot at that time,
    Today, not trade a second of what lived, stories of mothers like you not only teach me, if you do not give me strength, hope and above all life lessons.
    Thanks Kate! Today your letter gave me the words I needed, you are not crazy you're just an amazing and wonderful mother who has a broken heart .... I'm praying for you and thanking you every day .... god bless you (forgive any errors to write my language is Spanish)

    ReplyDelete
  54. It's alright to be mad.... you're human. I wish I was close enough to give you a hug. Thank you for letting us be there with and for you. Hugs and prayers.

    ReplyDelete
  55. This post is heartwrenching.... and in a weird way, a good sign - a sign that your progressing naturally through the five stages of grief. You went past the denial pretty quickly, and now you're in the anger/rage stage. Let it out, let it wash over you. IT's normal, natural, part of the healing process, and totally necessary.

    ((HUGS))

    ReplyDelete
  56. All I can say is thank you so much for sharing your precious son...your precious family...with the world. Gavin's bravery and your amazing spirit have touched me beyond words. I wish I could wrap my arms around all 3 of you. Much love and many blessings!

    ReplyDelete
  57. I would be shocked if you weren't mad... you should be, a really awful horrible thing happened to you that should never happen to anyone. I was pregnant when we found out our son wasn't going to survive and there was absolutely nothing I could do to save him... and in addition the one thing I thought I could do, keep him safe until delivery- I couldn't because my uterus was bruising him due to the fact I had no amniotic fluid. I was sad, but more than that I was furious- why me, who had done everything right and desperately wanted this baby. I was mad at people who said stupid things, I was mad at people who pretended he didn't exist, I was mad at God for giving me a baby and then taking him away, I was mad at the universe, I was mad at the doctors who couldn't do anything, I was mad at myself for being so useless. I too remember screaming obscenities and throwing things. You spent 5 and 1/2 years with a beautiful, amazing child only to have him taken away before he had a chance to accomplish all the big things he had in store for him- I think you have every right to be mad and you're right- it's ok to be mad, it just is.
    As far as the anonymous coward who posted that- you parented the way you had to. I am a bit overprotective of my kids, but I'm not a as germ conscious as I should be by any stretch of the imagination- because I've never had to be. My rainbow baby had a lot of ear infections as a baby, but it was due to his Eustachian tubes. If I had a child who was as medically fragile as Gavin, I would do exactly what you did... and people who don't realize that clearly live in worlds where babies never die, never suffer brain damage due to seizures (like my aunt). I think emergency kits are a great idea regardless of how healthy your kids seem- I know my husband sometimes gets confused as to which of our kids is allergic to amoxicilan and in an emergency, Shawn could easily end up with a med he was allergic to. Your children have an amazing life and I wish I could punch that woman for you. Instead, I think I am going to make emergency kits for my own kids :)

    ReplyDelete
  58. I am mad right there with you. Mad and sad and mad again. Sending love and prayers to your family daily. You are an inspiring, amazing mother - thank you for sharing that with the the world - www.afourytale.com

    ReplyDelete
  59. Oh, the roller coaster you are on... God bless you, sweet Kate. I am sorry for the people with thoughtless and careless words. You don't need that. You are an outstanding mother. Nothing can diminish that reality. I am praying for your family.

    Blessings,

    Judee in Iowa

    ReplyDelete
  60. I found you through Momastory and left you a comment there. I don't know why, but when people are suffering, I can't walk away. I want to walk through it a little with you, as small a help as that is.

    What you have been experiencing is unbeLIEVable, and I'm not even talking about the sadness of your recent grief (and the grief and challenges before that), but the reactions of people who handle you with caustic, acid-dripping hands. Good grief. As far as FB goes, I am guessing you can't remove a comment someone else makes? But I know you can block people, and that is definitely what I would do.

    I prayed for you in the car on our way to church this morning with my husband. My daughter asked about your story, what had happened to Gavin. So people very far away are thinking of you and praying for you.

    ReplyDelete
  61. You have always been in Gavin's corner supporting and loving him with you're entire being. He is smiling somewhere proud to call you "mom."

    ReplyDelete
  62. My son had a febrile seizure when he was 2. He is now 5 and every time he gets a fever I am always worried and even have him sleep in our bed. So I would have to disagree with the comment about being overboard. I came across your blog the day your precious Gavin went to be with the Lord. I have been praying for your family ever since and will continue to do so

    ReplyDelete
  63. Damn, girl, BE MAD! I've been mad since this whole ordeal started. Angry that such a senseless, stupid, heartbreaking thing could happen to such a special little boy and his family. Be mad. You have every right.

    Just don't ever say you were useless in those final days. You were HELPLESS, certainly, but never useless. You were Gavin's Mommy and you loved him and you were there and he knew it--he knew, he knew. Love is never useless.

    So be mad. Scream the sky down. Let the anger out, until you can feel the love flow in.

    ReplyDelete
  64. "It just is".

    That is spot on, Kate. It just is.

    I've never lost a child, but I remember the feeling of wondering why everyone else can just go on with their lives when mine was shattered (I lost my brother, who I was extremely close to, quite suddenly). I remember having very similar feelings - not mad at anyone in general, but just mad. You are right - it is part of grief. And part of what has to be worked through.

    Which sucks. Seriously.

    (And I know losing a child is nothing compared to losing my brother - but I can "relate" to the mad-grief thing).

    But it is what it is. And I applaud you for publicly sharing with us your thoughts and feelings. I wish and pray for peace for you, Ed and Brian as you navigate these rocky waters.

    You may have not been able to help Gavin "at the end", but you did so much to enrich his beautiful short life. You were there - you were present - you were his best advocate. And it was nothing short of amazing to watch what all your advocating did for that special little boy. This boy - who wasn't supposed to sit up - was WALKING! He was amazing. And he had parents who were there to help him be amazing. And that is such a great gift.

    Blessings to all of you. And major, major hugs.

    ReplyDelete
  65. Girl, I'm glad you can write down your feelings. You're a human being with senative emotions.
    There's a time for everything; a time to laugh and a time for sorrow, a time for sadness and a time for MADness!
    Again, thank you for sharing.

    ReplyDelete
  66. I'm mad for you. We all are. Even with the miraculous news you announced today...This journal has tears pouring out of my eyes for you. But God isn't done with you Kate. You are a special type of Mother. And your babies were chosen for you to mother as no other woman could. I'm praying for you. And your new miracle. And for peace.

    ReplyDelete
  67. you go ahead and be mad..you lost your precious baby boy. you have every right and if anyone tells you otherwise i suggest they stand 5 mins in your place..i bet you they wouldnt make it! sending lots of love to you, Ed, Brian and his fishie!

    ReplyDelete
  68. Only someone who has never watched their child have a seizure would think you were going overboard. I'm so sorry for your loss, I would be mad too, and sometimes I would be madder than mad.

    ReplyDelete
  69. Here's the thing: your loving care definitely DID change your son's journey. And it's the journey that counts, not those final powerless moments. Your love and care and dedication and vigilance and LOVE meant that Gavin had the best 5 1/2 years he could have had. Period. It doesn't matter what other people think. You did the best you could do. (I know, easier said than believed; I have to re-remind myself of this every day!).

    ReplyDelete
  70. Mad is ok. Mad is really ok. As a reader, I will apologize for the inconsiderate folks who have passed your way. Lets hope the good is more abundant than the inconsiderate.

    ReplyDelete
  71. Kate, be mad.

    And send us the name of the chick who called you a bitch. We'll show her bitch. Sheesh.

    ReplyDelete
  72. I'm mad for you. And I'm sorry for the stupid things thoughtless people say. Never has a little boy known so much love and devotion as your Gavin.

    ReplyDelete
  73. I just read your blog for the first time... so sorry for your incredible loss! My daughter struggled w epilepsy for a lil over 2 yrs.. (she is in remission now as of june 2012) your message was so real and seizures are a very scary thing... my maegie had a 9 min tonic clonic when she was 8 1/2 yrs old! Seemed out of nowhere.. then we
    realized after spending 4 days in the neuro
    dept for children, she had actually started w absence epilepsy. She was having over 125 a day (WE LOST count at bedtime... so
    sure w as much more in 24 hr span)
    That seizure caused me to get therapy and be told I had a mild form PTDS (post traumatic stress disorder) her lil body was lifeless and blue in color and I thought I lost her..that image was etched in my mind for so long... please know your own heart... never let anyone take your feelings from you or your rightful feelings as a Mom... I wint get into the rest if my story, but just to say we had many relatives with their thoughts about how I should handle my feelings... I had to forgive them because they simply don't understand! Wasn't easy to be around them during her sickness because of their judgements... it really helped me feel even more like going of the deep end... luckily I had twice ot triple that amount in support ... so that is where I kept my focus! My heart breaks for your lil' broken one... my mother hasnlost two children and she is AMAZING to me... as I also sense that about yourself. Thank you for being brave and sharing:) many wonderful thoughts your way from me to you...
    Colleen

    ReplyDelete

Related Posts Plugin for WordPress, Blogger...
 
Header design by Susie Q. Designs