Thursday, November 21, 2013

The grief that won't let go


I've gotten to the point where I can talk about Max's birth and not get distraught. "He had a stroke at birth," I'll say, matter-of-factly. I'll note that until we had Max, neither Dave nor I had a clue that babies could have strokes. Depending on who I'm speaking with, I might mention that Max's stroke was bilateral and affected both sides of his brain. Inevitably I will say, "He's doing so much better than doctors thought he would. He's a great kid." 

But there are times when thinking about Max's birth makes me lose it, as happened the other night. I was cleaning out a cabinet and I found a disk with old photos. There was the above snapshot of Max from the morning after he was born. There was this video:


Dave shot the video a few minutes before Max stopped breathing and turned blue. Before it happened a second time and he was taken to the NICU. Before we'd learn, in the afternoon, that Max was having seizures—the first indication that he'd had a stroke.

But Max looks so perfect in the photos and video. And I look so happy, the kind of delirious happy you are after you've had a baby. And my mom and sister look so happy. And none of us could have ever imagined what lay ahead.

I sat on the couch and sobbed. 

It's Post Traumatic Stress Disorder. My heart will not let go of the shock, anxiety and despair that consumed me back then.

"Your baby has had a stroke... a large one."

"Your son may never walk or talk."

"Your son may have severe cognitive impairment."

"You could sign a Do Not Resuscitate."

The bursts of sadness I can handle because they're just that, passing moments. But their continued existence bothers me because they are a disconnect to the realities of Max. I look at him and see only an amazing kid, not a tragedy.

Max's eleventh birthday is coming up. My eleventh anniversary as a mom is coming up. His birth will never be a happy event for me, yet why does it have to still hurt so much? It feels as if I am doing Max wrong by grieving this way. He doesn't deserve that.

After Max was born, I saw a therapist for a few months. I'd walk in the door from work, send the sitter home, bundle Max up, drive to the therapist and sit there and talk as Max lay sleeping in his car seat. It felt good to vent and cry freely and not feel like I was burdening anyone, as I sometimes felt with Dave or my friends.

Last year, around this time, I got it into my head that I was going to visit the hospital. Surely that could help exorcise the grief demons. I had fantasies about sneaking in to the NICU (maybe a kindly resident would escort me up?), but decided I'd be content to sit in the lobby and relive what had happened.

I told Dave. He didn't think it was a great idea. "It's the same reason why you don't look at Max's brain scans—it doesn't really do anything," he said. "I think you can use your time more productively." A perfectly rational answer, but I wasn't convinced.

I know two psychologists, and I spoke with them about my plan. "If you were my patient, I'd ask what you want to get out of this," said one. What I wanted, I told her, was to take the hell out of the hospital. She was dubious that a visit could do much, but as long as I was aware of that and had no great expectations, she said, "it could be a positive." The other shrink also wasn't sure I'd get anything out of it, but said I should try it because it couldn't hurt. 

I still haven't gotten to the hospital.

When I'd finished crying, I went upstairs, washed my face and read a book in bed. I knew I'd wake up in the morning feeling better, and I did. But it was Max who gave me the biggest lift.

Max had led me over to our big family calendar on the kitchen wall. I thought he was going to ask me show him when his birthday party is. Only he pointed to November 27, looked at me and said "Mommy's birthday." He has never before paid much attention to it, never known the date. Progress.

The grief, I suspect, will always be a part of me. I need to quit struggling with why it's still there. It says nothing about my life now, my motherhood or my love for this boy, who is the best therapy of all.


Photo/Yasmeen Anderson

53 comments:

  1. i'm 22 and i feel like my mom is still grieving i try not to take it personally knowing she's not grieving me but rather the person I could have been.

    ReplyDelete
    Replies
    1. Maybe not the person you could have been because that takes away from the person you are now and how much you've overcome. Perhaps she grieves the fact that you were hit with such a heavy burden (whatever your burden is) - that fate dealt you a difficult hand. That's how I feel about my child. I love him and everything about him but, why did he get saddled with so much. It's not fair! He deserves so much more.

      Delete
  2. Tears, tears, and more tears! I understand exactly how you feel. Thank you for this post.

    ReplyDelete
  3. Hi -- I think you said it perfectly that the grief will always be a part of you. You can't cut it out like a tumor. You can't visit the hospital and somehow "recreate" what happened so it's not a painful story. You'd can't get "over" it and tie it up with a pretty bow and never feel it again. Part of it is losing your innocence. Experiencing something of this magnitude in life is a loss at a time no one expects to experience loss. I think we make it twice as hard when we beat up on ourselves because we still have these feelings. "Why am I not over this yet?" Why should you be? xo

    ReplyDelete
    Replies
    1. So well put....for anyone experiencing grief from a deep loss...

      Delete
  4. Maybe its just because you have a 'writer' personality :-) I think people who write can step outside the moment - to be observers in their own lives and also to feel more intensely.
    Sorry if that makes no sense...it's just that I've noticed the same type behavior as you describe in myself and some writerly friends. We get upset just because it was upsetting then....never mind that we feel OK about it now. (it can be any issue). It doesn't have to mean anything about Max.

    ReplyDelete
    Replies
    1. Anonymous....
      "Maybe it's just because you have a 'writer' personality. I think people who write can step outside the moment - to be observers in their own lives and also to feel more intensely. Sorry if that makes no sense...it's just that I've noticed the same type behavior as you describe in myself and some writerly friends. We get upset just because it was upsetting then....never mind that we feel OK about it now. (it can be any issue).".
      Wow!! You just "diagnosed" the main driving force behind most of my issues!! Thank-you!! I am a writer!! Unpublished. But I am a writer!! I do, indeed, "step outside the moment"!! All. The. Time!! I observe others, plus my own feelings/emotions. I feel more intensely than most. I see everything. This makes sense to me!! ;)
      --Raelyn

      Delete
    2. Thanks Raelyn,
      What I wrote above didn't come out so well. I need to develop the thought more but I'm so glad you get it. :-)

      Delete
    3. Anonymous....
      It's all good!! ;)
      --Raelyn

      Delete
  5. Thank you so much for putting this into words. I often have the same feelings and thoughts and just a few weeks ago said to my mother "I wonder when the grief will go away, why can't I just get over it?". Even though I know in my heart it probably never will, the worst part is that I can't explain that to people or reconcile it with the overwhelming love I have for my son. You, most certainly, are not alone.

    ReplyDelete
  6. Thank you so much for writing this. My son is 6, and not a day goes by that I don't still feel sad about our situation. I often think that it should have gone away by now, that after 6 years I should just feel better about everything. I'm sorry you're going through this and that you feel this way, but know that you are not alone. We are all doing the very best that we can.

    ReplyDelete
  7. I have feelings like this a lot.

    I love my son. So much. He's an amazing kid, has the sweetest heart, he's smart, funny, and all around wonderful.

    But I feel so, so awful about what happened that caused all his challenges. I can't get over it. I can't change anything about it, but I can't just let it go.

    ReplyDelete
  8. Thank you for sharing. You are not alone. Most days we just go about life as usual and then I have times when all I can do is feel my heart breaking.

    ReplyDelete
  9. Than you so much for this, Ellen. Nik will be 10 in three weeks and, since he was born, I have always had a very rough time with the holidays and his birthday. I did finally realize a few years ago that it's a form of PTSD and is not at all indicative of our life, my feelings, or even conscious grief per se. But I still struggle with it. I don't have any answers, but I'm feeling less shameful about it because I know I'm not alone. Sounds trite, but it really does mean a lot.

    ReplyDelete
  10. I'm definitely in the lifetime club of grief. Here's how I look at it…lately anyway. I love my son. I accept HIM. I don't have to like his condition, or the difficulties that he lives with because of it. I don't have to stop my uncomfortable feelings from coming….but I do have to make sure that they don't take a permanent seat on my couch. "Acceptance" is not some happy holy grail. It's not a static place of mind. It's fluid, just like life. Hugs to all.

    ReplyDelete
    Replies
    1. Joanne, I love your comment. Fluidity of acceptance. Awesome observation. And I definitely feel that movement of acceptance going up and down depending on the day.

      Delete
  11. Mine wonderful daughter is 20. There are other special-needs mom's groups out there that are laying the guilt trip on parents for having their own issues to deal with, literally attacking other parents for having feelings about what happened to their child. We are not robots. I live every day loving Rachel, and I'm good at doing it now. But I still have flashbacks to the infantile spasms days, and it doesn't have anything to do with who she is; it is about what my baby went through. It is PTSD. I cry when I see her old EEG or find her helmet in a box, or when I see a special-needs adult and pray so hard that someone will be here to love her as much as I do when I'm gone. Thank you so much for sharing, because with all the judging and attacking going on within our own ranks our feelings need to be validated and worked through too, not silenced.

    ReplyDelete
  12. Ellen....
    "The bursts of sadness I can handle because they're just that, passing moments. But their continued existence bothers me because they are a disconnect to the realities of Max. I look at him and see only an amazing kid, not a tragedy.".
    When Max was born, this thing called Dream promised a bright and happy future. But then Reality took over. Max suffered from a stroke. You then felt hurt, heartbreak, devastation, and hopelessness, and depression. These are all natural emotions/feelings, because, as a Mom, all you want is what's best for Max.... And Sabrina. But then. You moved forward to the best of your abilities. You moved forward. Because of a sincere, never-ending love for Max, this Blog was created. And I am glad that it exists!! You became an advocate for "special needs" children, not just cerebral palsy/stroke babies. Plus adults. All thanks to.... Well.... Max's unfortunate start at life. You have taken the shattered, broken pieces of your dreams for him, and use the pieces to create beautiful mosaic artwork!! Now. Will there still be days where grief hits you like some military ambush? Yes. These are mood swings. They're "growing pains". You should rebound from each and every one with newfound perspective. I do whenever I'm grieving being learning disabled or a shattered, broken dream. These mood swings, are, to me, an incredibly healthy process toward healing!!
    I get it. Trust me. I do.
    But you!! You're doing great, Friend. As is Max!! Keep it up!!
    --Hugs!!--
    --Raelyn
    Sorry. Long comment!! ;-}


    ReplyDelete
  13. A friend's niece who was born a few weeks before Molly just got accepted to college. It didn't even dawn on me that this is the year she would have applied to college. I have to say that it put me in a funk for a couple of days for reasons that are hard to describe. That being said, she has a very full busy life with tons of friends and lots of laughter. She has even taken to given me the finger when she doesn't like when I ask her to do something she doesn't want to do, like homework. I would say that is age appropriate (but most kids wouldn't do it right in front of their mom!)

    ReplyDelete
    Replies
    1. Hannah Jacobs....
      This is going to be an unpopular comment, but I don't care!! ;)
      Attending--or not attending college does not matter in Life's big picture. Molly has a very full busy life with tons of friends and lots of laughter? Then you are doing something right!! I understand your feelings. Trust me. I do. But I will write it again. Attending--or not attending college does not matter in Life's big picture. And, I can't even believe that I'm thinking these words. Because, as a learning disabled individual, somebody who I am in close proximity to is attending college. In pursuit of something important and meaningful. So I have felt jealousy....
      --Raelyn

      Delete
  14. Nisha, from comments above, I don't think your mom is grieving "the person you could have been" because she thinks you are not enough. Every mom just wants to have their child be as happy and care-free as he or she can possibly be. That's what hurts our hearts and is why we grieve. I speak from experience.

    ReplyDelete
  15. m not a mom but I speak from experience. I still grieve what may have been if I didn't have a disability. Many nights I cry myself to sleep after needing help with so many things. Sometimes a certain situation causes it (such as sitting alone in a theater because none of my friends want to sit in the wheelchair seating) or sometimes I randomly start thinking about it.I write songs about how much I hate it or I yearn to have a good body. I do have fantasies where I'm able bodied & have friends. I wake up from the fantasy & realize that's just what it is. However, I feel like a hypocrite because I say not to pity people with disabilities. But I need a good cry until I fall asleep or cry to my friends w/disabilities who can relate.

    ReplyDelete
    Replies

    1. Tuesona....
      I love your name!! How do you pronounce it? ;)
      "I still grieve what may have been if I didn't have a disability.". "Sometimes a certain situation causes it (such as sitting alone in a theater because none of my friends want to sit in the wheelchair seating) or sometimes I randomly start thinking about it.". "I feel like a hypocrite because I say not to pity people with disabilities. But I need a good cry until I fall asleep or cry to my friends w/disabilities who can relate.". I'm learning disabled. And I can totally relate. I get it. I understand your feelings/emotions. I truly do!! The fact that nobody will sit with you in theater room wheelchair settings breaks my heart. I would. In a heartbeat!! ;)
      --Raelyn

      Delete
    2. Thanks Raelyn.Glad someone else understands I grieve too. I'm glad you would sit by me. I love movies fantasy & horror especially :)

      Delete
  16. This was a great explanation of what we as parents, struggle with after something traumatic happens to our children. After yrs of dealing with it as well, I have come to the conclusion that Faith is the way she is for a reason, God has a plan for her & she has become a great blessing w/i our community, family, church & my own life. It's not what we had planned for her or us, but its something wonderful just the same! Greiving what happened to our children makes up part of who we are as people/parents it makes us sad but it also makes us sensitive to life & I know for me, it made me FEEL more than I ever did before. I am more empathetic, caring & I relish life bc I know what almost happened. I chose to look at the pain/sorrow as a component of me..as a person...part of who I am.

    ReplyDelete
  17. PTSD. I'm so glad I read this writing and the comments as well. My five year old son is healthy and developing 'normally' and yet I still have flashbacks of one doctor after another coming in to the recovery room telling me even worse news than the one before, with the last one telling me that my newborn baby boy was sedated and on a respirator. He was born with pneumonia. But, he was in NICU "only" 10 days and he was small but not a preemie (he was 'early term') and he never suffered another day for it. I feel guilty for my grief because so many other mothers took home babies who would have life long challenges with health and/or learning which my son would not have. But PTSD works for me. It isn't about what
    I'm experiencing now, it's about a two week period in my life when nothing was certain and my heart might have been broken forever.

    ReplyDelete
  18. My daughter is 30. She is the light of my life. I grieved when she was born a little bit. Mostly I was just so darn busy learning about Autism and hunting down ways to help her learn and grow I did not have time. Over the years I have let go of many dreams for her that I recognize were typical "Mom" dreams, and I have grieved briefly at certain traditional milestones. Mostly, I celebrate the things she does daily that always impress me given the degree of her Intellectual Disability. I celebrate her big heart, intuitiveness and willingness to learn new things. While away on a Dominican Republic vacation I witnessed a small wedding as I relaxed on the beach. The bride and groom were so obviously in love, the families so happy for them. I had not thought much about my daughter getting married before, but that day as I witnessed the wedding, grief took hold of my heart, and my eyes filled with tears. I allowed myself to feel the grief for some time. Later that afternoon I allowed my heart to fill with love and joy for all my daughter is now.

    ReplyDelete
    Replies
    1. Anonymous....
      "While away on a Dominican Republic vacation I witnessed a small wedding as I relaxed on the beach. The bride and groom were so obviously in love, the families so happy for them. I had not thought much about my daughter getting married before, but that day as I witnessed the wedding, grief took hold of my heart, and my eyes filled with tears. I allowed myself to feel the grief for some time. Later that afternoon I allowed my heart to fill with love and joy for all my daughter is now.". I know how you feel. As a learning disabled individual--who is currently "pushin' 30"--weddings sometimes hurt emotionally. Why? Because it is not me up on that alter, wearing my snow-white wedding dress, exchanging vows!! But. As Mom has told me repeatedly. "Not everyone is call to get married.". I am glad that you overcame your little pity party.... ;)
      --Raelyn


      Delete
  19. I also have PTSD about the winter from hell following Addi's birth. It's really the thought of PICU that freaks me out because that's where she spent that entire winter and where so many of the bad memories were formed and where some really fierce conversations took place. I don't think I'll ever get over it, and my degree of freak out surrounding planned surgeries depends on whether or not she'll recover in PICU. It's a very dark place in my mind, and even though we've moved to another city with another children's hospital, the very thought of PICU sends me into a meltdown.
    I will say, though, that I've gotten a bit past the grieving over just her. It sounds odd, but when I read The Shack a few years ago, there was a whole section on forgiving yourself, and it spoke to me. I can spend her entire life blaming myself because my chromosomes somehow caused this, or I can forgive myself and celebrate how amazing she is.

    ReplyDelete
  20. I mentioned this post here:

    http://bloom-parentingkidswithdisabilities.blogspot.ca/2013/11/and-truth-shall-set-you-free.html

    ReplyDelete
  21. Yes, Ellen, yes! I have my grief triggers too. I have a hard time with anything birth related. Hearing of any child's birth (friend or complete stranger) always gives me pause, brings me back momentarily to the scariest time in my life. I definitely have some PTSD symptoms. The grief will always linger like an unwelcome guest at my life party. I could use a bouncer, but grief always seems to sneak back in. It certainly doesn't change how much we love and accept our kids. I get it, Ellen.

    ReplyDelete
  22. Thank you so much for sharing this here. And writing so beautifully, bravely and honestly about what so many moms feel. As someone who struggles with my own grief and as someone who has been working through it in therapy for the last year, I appreciate this post more than you will ever know. And you are so right - in my darkest moments, my son is my best therapy. ~ Lisa

    ReplyDelete
  23. Just so folks know, PTSD is treatable. There are specific therapies such as cognitive behavioral therapy (CBT) and eye movement desensitization and reprocessing (EMDR). In addition, some drugs can help reduce the intensity of treatments. You can learn more by googling the National Center for PTSD. Keep in mind that many therapists don't have specific training or experience in treating PTSD, so be sure to ask when choosing a therapist.

    ReplyDelete
  24. I'm not a mom. But, as a 20 something with CP, I still grieve in certain ways too. I've often compared a disability, as a continual grieving process in some ways. And, I'd imagine having a child with a disability is the same in that way. I think you have the right attitude in being willing to embrace it. As you said, it says nothing of Max, and doesn't dampen your love for him. I

    ReplyDelete
    Replies
    1. Laura....
      "I'm not a mom. But, as a 20 something with CP, I still grieve in certain ways too. I've often compared a disability, as a continual grieving process in some ways."
      I live with learning disabilities. It hurts sometimes to be different. So I get your feelings. And you are correct. It truly is "a continual grieving process in some ways". ;)
      --Raelyn

      Delete
  25. Try looking at the hospital as the place that saved Max. What if he had stopped breathing at home in the middle of the night? Maybe by finding the stroke soon it averted further harm :-) maybe he was just going to have a stroke for whatever reason (brains are funny things) what better place to have a stroke than in the hospital?

    ReplyDelete
  26. Everyone experiences tragedy. It's part of human life.

    ReplyDelete
  27. @ Anonymous " Everyone experiences tragedy. It's part of human life. " .... So true, couldn't say it any better :S

    ReplyDelete
  28. As the mom of a child with life threatening food allergies (also 10) I totally and completely believe that we suffer some form of PTSD as mothers to special needs children. I can't relate to your story on exactly the same level, but I do believe I still haven't gotten over the grief of learning that my child could potentially die simply by eating.

    ReplyDelete
  29. I love your honesty. And from where I sit, having these feelings about the PTSD is so incredibly unrelated to the massive love you have for your son. There is room in your life for both, until (or if) you're ever ready to let go of the former. Talking about these feelings, and the trauma that you endured in those moments is such a gift for other parents. You are providing them with the truth: we are mere mortals and we feel pain and anguish when something devastating - such as your newborn baby suffering a stroke - happens. Thank you for continuing to use your voice in such a way that offers others not just hope, but self-awareness, forgiveness, and permission to life their lives on their terms. I can only imagine what going to the hospital may be like for you. When and if you do decide to do it, please let us know, so we can support you and lift you back up if you fall.

    ReplyDelete
  30. One of my favorite writers -- Anne Lamott -- wrote,
    "Sometimes love does not look like what you had in mind."

    ReplyDelete
  31. Thank you for writing this Ellen. And I did go back to the NICU once-- and it smelled just like it did when my son was there. And I felt so odd and nostalgic and heartbroken all over again.

    ReplyDelete
  32. My heart breaks for you. When my son was born via emergency C Section, he had to be transported to another hospital. To this day I feel saddness when thinking of his birth. He is fine now but his birth still makes me sad.

    My brother is physically handicapped and my mother carries a bit of saddness and blames herself. So I understand

    ReplyDelete
  33. Thank you for this post. My cousin forwarded me your blog. My son arrived 3 months early and spent 66 days in the NICU. He turns 18 months old on Friday (but he should only be 15 months old!). Every milestone is so bittersweet. The day of his birth was one of the worst days of my life. What a horrible thing for a mother to say, but the reality is that we both almost died and I find it really hard to celebrate that. Still, my son is a blessing and I am blessed to be his mom, and that I celebrate everyday. Max sounds like a true blessing too. Thank you for your candor. There are so many other moms out there who "get it" and are thankful to you!

    ReplyDelete
  34. Thank you for making this feeling make sense ...it is a form of PTSD and I never thought of it that way. My story is so similar to yours. Our beautiful daughter was born late at night so we had about 12 hours with her thinking she was perfect before the doctor came in and destroyed our lives by telling us she had Trisomy 18 and would only live a few weeks to months! It was as if someone ripped my heart directly out of my chest. She just turned 3 and every year her birthday is a hugely exciting time, but it also takes me back to that fateful day and I feel the trauma all over again. I can't think about it without bursting into tears (crying as I write this). I wish I could forget it, get over it or something and just enjoy her special day as it is truly miracle she is here (and doing amazing too), but it will always be with me I'm afraid.

    ReplyDelete
  35. I can totally relate to this :/ Not sure it will every truly go away.

    ReplyDelete
  36. THANK YOU FOR POSTING THIS! I have the same feelings when I look at the pictures of that blissful hour with my son before his stroke. I have the same PTSD when I smell the sterile chemicals of the hospital or walk past the elevators that lead to the NICU. THANK YOU! We are not alone.

    ReplyDelete
  37. Thank you for sharing. Lately I have been struggling with the same time of grief. I felt so guilty about it but after reading this I see I am not alone. I am the mother of an eight year old with special needs. It's a daily battle but the joy and love I feel for him is undescribable but the sadness also takes its tolls some days. Know you are not alone. God bless you. thanks for sharing.

    ReplyDelete

  38. I have never been in your shoes (or my own mother's for that matter). As you know, I was the one born with CP, not the mother who gave birth to a child who is differently-abled so I am not going to tell you I know what you're feeling because, I don't.

    Your post gave me a greater insight into what my mother might have felt and maybe is still feeling. My mother has always been my greatest ally..she's the one who told me and anyone else who needed to hear it, that I could do anything. On days when I wanted to throw in the towel because I didn't get the job I wanted or when I was younger and would get upset because I couldn't do things other kids were doing, or they wouldn't let me because I was "too slow," it was my mother who cried along with me and told me to keep going because I was strong and better than anyone who didn't believe in me. I know I wouldn't be where I am today without her and her constant support and belief in me.

    I can also tell you that while there certainly is a part of me that knows what I don't have, and I used to grieve for it too, I can honestly say that I am really at peace with who I am now. I used to hate my crutches, and by extension, myself. Now, if I was told I could have one wish granted, I would not ask for the ability to walk without my crutches. They simply don't bother me anymore. There is a part of me that is afraid that if I wasn't differently-abled, I would be a totally different person with a different personality and I am more afraid of losing my desire to work with differently-abled children and adopt some of my own someday and all the other things that truly make me, me than I am of spending my entire life on crutches. You see, who I am today, my experiences have helped shape the way I view things. Sure, life is difficult and some things take me a really long time to do, but I try not to let it get to me. From what I've been able to gather from your blog, you are a lot like my mother and will continue to instill in Max the fierce independence and pride in himself that will help him conquer the greatest obstacles.

    He is blessed and lucky to have someone like you by his side. I can't tell you what Max will feel like when he is older but I can tell you that he will make it, and in large part it will be because of your support. I look forward to seeing what Max will accomplish in the future.
    I hope it's okay for me to speak for myself and other people I know) we truly don't focus on what we don't have, we learn to live with it and for the most part, don't think of it. We just are who we are and live life to the fullest :)

    ReplyDelete
    Replies
    1. Thank you so much for sharing your own experience!! I am a mom of a 5 y/o with cp and I love to hear from adults and even teenagers about their own experiences. I laughed and also cried from reading what you wrote. Once again thank you and keep moving forward, you have an amazing attitude and outlook on life!

      Delete

Thanks for sharing!