I bought Fumenkes.com. I personally loved it (not shocking)- but others weren’t as in love. My mom found it offensive and my husband didn’t want his grandmother going to FUmenkes.com. I suppose I can see their points- yet I’m not saying FU, I’m saying FU Menkes. It’s a giant middle finger to my least favorite disease- that’s it. But instead of fighting with them, I did something I don’t normally do- I gave in. I bought superteddyfish.com…and it’s no FUmenkes- but it does the trick.

 

So this is going to be my new home for posting. While caringbridge has been wonderful- and mutually beneficial, I’ve retired. I want Teddy’s story to be bigger than caringbridge. This isn’t just a health update site for teddy’s ‘progress’ which seems like such a weird word to use anyways, this is my heart, my emotions in words. This is a site for people to learn about menkes, a site to learn about teddy, and a site for any struggling parent to know they are not alone. And I promise you- I’m struggling, more than I can accurately express through any medium. But I will continue to write about my struggles- my emotions, now and after my baby leaves me. Because what I’m going through doesn’t end the day Teddy passes, or five years after he’s gone, my pain won’t stop until I join him in heaven.

 

I live with guilt on a daily basis, guilt that I can cure him, guilt that I can’t give him the normal life he deserved, guilt that I can’t be with him every second of every day, and guilt that in some weird
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way, I have to think and plan for a life without my baby. I really wish it was the other way around. I can’t express how much I wish

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more day on this earth. Nothing would make me happier than to have Teddy as my legacy and get to watch over him from heaven. But life’s not fair. So as my sister’s kids are planning their futures as dentists and dances, I know my son can only be one thing, an angel. But I would rather have my angel than anyone else’s teacher, doctor, or president.

 

Then there is the guilt that I don’t need. I met with a social worker from hospice this week. When she left I didn’t feel better- and I think that’s the point of a visit with a social worker. I actually felt worse, and guilty. I’m sure it wasn’t her intention- or at least I have a hard time believing she’d have much of a career if that was her m.o….but she mad me feel horrible. There were a lot of questions about my job, how long I plan on working, have I thought about a leave of absence, etc. Her point was that I’m not home during the visits- and if I’m not home, I’m unable to establish a relationship with the nurses and doctors. Really? Really, you think I need that right now? After the line of questioning I had to ask, “Really, I’m the only mom that works?” Her response was a weak no- followed by a …”well…” Thanks a lot lady. Could you not just support me? And if I didn’t work- someone would have something to say as well. So here it is, I’m trying to balance it all- which as a working mom is virtually impossible anyways. Now

add my terminally ill baby and balance has a whole new meaning. But at the end of the day, opinions are like assholes- everyones got one. So I’m going to ignore her and continue to do the best I can- which I promise you always has Teddy as my number one priority. No mother could disagree.

 

I LOVE you to the moon and back Teddy Fish. I’ll never let anyone forget
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By |April 13th, 2014|Categories: Journal|Tags: |23 Comments

23 Comments

  1. Noreen Selvage April 13, 2014 at 10:39 pm - Reply

    Stay Strong Mary – Continue to love Teddy like you do – enjoy every moment you have with him – None of us know when one of our love ones will be taken away. Unfortunately your beautiful son is suffering with this “FU” Menkes. I can tell you over and over to not feel guilty, but it will not work. You are a mother and that is just how we are. There are no words of advice I can give, because I have not walked in your shoes. Just know that you all are thought about everyday! May Teddy continue to feel love and feel no pain.

  2. Karen Malmgren April 13, 2014 at 10:46 pm - Reply

    Mary, it’s OK -how you feel-working-angry-you are just being a mom-a mom who wants something more-who wants to do something more-it’s OK-be who you are-for your forever angel, Teddy. Praying…hang in there.

  3. lorelei April 14, 2014 at 4:24 am - Reply

    Mary… The Native American saying of ” walk a mile in another mans Moccasin’s” fits the bill here. May she never feel you pain. Keep doing what you’re doing. Your mind needs to have time to think on other things in order to be able to cope with all your stress and to be able to be 100% in the moment for Teddy. There is nothing more a Mom has to say than “I wish it was me” to earn the crown in heaven. I wish you peace where you can find it. Know people pray a thousand times a day for Teddy and you and Alex… And for all your family. (And know too that your mom is saying she wishes she could take on this pain for you. That’s the way true mother’s love rolls!)

  4. Angie Gordon April 14, 2014 at 6:24 am - Reply

    Mary,
    I think sometimes those people lack (as Jennifer Aniston said) a sensitivity chip! They have no idea how difficult it is for you to wake up everyday knowing you have to go to work to support your family and beautiful son, while he’s facing this battle. What mother wouldn’t want to be able to stay home with her sick baby. The sad thing is, we as mother, suck it up and do what needs to be done despite our own needs. We do it b/c we do love our children to the moon and back and would everything in our power to make sure they get what they need before our own needs.
    You are a wonderful mother and Teddy adores you, that’s evident in his smiles and giggles every day!!! He knows how much you love him, don’t ever think twice about that!
    You and Alex are facing something that no parent should ever have to. I wish I could find a way to help ease your pain. My heart breaks every day for all of you.
    Alyssa asked over the weekend when we were coming to visit baby Teddy again, I told her I hoped we could visit this summer.
    Love Always,
    Angie, Jason, Alyssa and baby Xander

  5. JENNIFER HENEBURY DUNHAM April 14, 2014 at 8:18 am - Reply

    You are the definition of a what a “mother” and “wife” are meant to be. You do all you can for not only Teddy but for your family. Taking care of Teddy and working because you have to in order to support the family not because you want to is exactly what a mother and wife do….out of love and necessity. Shame on those who judge. Big hugs for Teddy today and everyday…

  6. Maureen Maliff April 14, 2014 at 8:36 am - Reply

    Mary i dont know you but just from what i have been reading you are a wounderfull mother.Other people need not to judge and please dont feel bad for what you are doing like i said you are a amazing mom.

  7. Mikaela April 14, 2014 at 9:03 am - Reply

    I’m so sorry that woman made you feel judged, that’s just awful. I hope she learns a bit more tact as she matures. Or does her job.

    You are an amazing mom.

  8. Anonymous April 14, 2014 at 10:03 am - Reply

    Stay strong Mary. You know what is best for your family, you and especially Teddy. You’re amazing.

  9. Patti Wallis April 14, 2014 at 10:36 am - Reply

    Mary,
    You are an amazing, loving, compassionate mother, who is doing an amazing job, doing absolutely everything you can, to care for your wonderful son, Teddy. He is so precious. I keep you all, in my prayers, every day. Glad to have your mom, on the day shift.
    I am so very sorry you had such a terrible experience, with the Social worker. You do not have to ever meet with her again. I pray that everyone you meet, in the future, will be loving, caring, compassionate, and will really listen to you and your concerns. This journey is one that you could never had imagined you would be on.
    God bless you
    Patti

  10. Jen Dunn April 14, 2014 at 1:58 pm - Reply

    Mary, I think about you, Alex and Teddy every day. I wish there was something I could do to ease the pain, anger and suffering. Sharing Teddy’s story and your journey is so unbelievably brave. You are an amazing person and mother; Teddy is so lucky and blessed to have a mom like you. Praying for you all. Love, Jen

  11. Leanne Murphy April 14, 2014 at 6:36 pm - Reply

    Mary,
    Ignore that woman. She has clearly never faced anything like this in her life. You work when you can, and you’re home with your family when you need to be. That’s the best anyone can do. Speaking from experience, I know that it never feels like enough, but you are doing such an amazing job providing for your family in every way possible. It’s a long road, so pace yourself and know that you are all in our thoughts and prayers every day. ((HUGS))

  12. Nancy Coffey April 14, 2014 at 8:57 pm - Reply

    Mary, You and Alex brought Teddy home to Massachusetts to be surrounded by his loving family. You and Alex both gave up successful careers, loving friends and your beautiful house so that Teddy could be surrounded by his Grandparents, Aunts, Uncles and cousins. We love that little boy more than words could ever say. Teddy smiles with love and his eyes light up when he sees you and Alex. Anyone with eyes can see the loving family you are. So proud of you guys.

  13. Susan April 14, 2014 at 9:40 pm - Reply

    Mary,
    My heart continues to hurt for you. I am glad that in your posts you have made a place to share your pain and to express your anger. You have every right to all those feelings and never let anyone say otherwise. They cannot walk your walk, will never be able to walk in your shoes. To take all those feelings of hurt and frustration and try and make something positive come of them is very courageous. You are a wonderful mom with an abundance of love for your son and there is no doubt that he feels all that love surrounding him.
    I have not walked the walk you walk, but I have known loss. And, I wanted to share a couple of passages that I felt captured some of my feelings and gave me a small measure of comfort…I would hope in these words you might also find some comfort.

    So cradle your head in your hands,
    And breathe… just breathe,
    Oh breathe, just breathe…
    2 AM and I’m still awake, writing a song post
    If I get it all down on paper, it’s no longer inside of me,
    Threatening the life it belongs to
    And I feel like I’m naked in front of the crowd
    Cause these words are my diary, screaming out loud
    And I know that you’ll use them, however you want to
    —Just Breathe lyrics–
    I have also taken some poetic license with passages I found from the documentary “Strong at the Broken Places” about people devastated by trauma and loss who find common ground for their journeys to recovery.
    In part, review of the documentary said…Most of us have or will face serious trauma in our lives.
    As one of the people in the documentary explains…”Sooner or later life breaks us all, but with courage, hope
    and the support of people who care, many become strong at the broken places.” Whether it is the death of loved ones, family or personal illness, crime and tragedies all take their toll. But by reaching out to others we can become “wounded healers,” and in so doing find our way to recovery and meaning.
    I see some analogy in these words to your quest to inform and to educate about Menkes, to share the story of your beautiful son and to encourage other parents. In a sense you have become a “wounded healer.”

  14. Alissa April 18, 2014 at 10:04 pm - Reply

    Hi. My 1yr old son is also terminally ill after a relapse of his leukemia. I can relate to every word you write. You are not alone.

  15. Dotsie & Joe May 5, 2014 at 7:15 am - Reply

    Dearest Mary and family,
    You all are so brave and full of love. Our hearts are crushed thinking of what you are going through. We pray for you every day. May you feel the power of friends and family who are surrounding you in love and would do anything for you. Kisses to precious Teddy. Love, Dotsie & Joe Bernard

  16. Jennifer May 5, 2014 at 6:05 pm - Reply

    Dear Coffey and Fish families,
    It is with heavy heart that we are sending this message. Please know we love you all and are here for anything you need.
    Love the Dunham, Henebury and Knight families.

  17. Julie May 8, 2014 at 7:00 am - Reply

    Dear Mary & Alex-
    Our hearts are broken for you guys. There isn’t a worse possible ‘group’ to be a member, we know, we have also gone through the inconceivable nightmare of having a child pass on.

    You both have obviously been amazing parents to Teddy, he was the luckiest boy in the world to have you as parents and to be part of the Coffey family. It’s is so hard for others to comprehend what we actually feel when our child passes on, there are just no words to explain the deep, ripping heart ache, the loss, all the plans that will now not happen. The guilt you are feeling is so normal- but you have to know, you are only guilty of one thing and that’s loving Teddy as much as you have and will always.

    Health care professionals and others in this field can be completely useless, heart less and naive, especially if they have never even been a parent, but want to judge you on how you’ve decided to live your life and raise your children. Please ignore their ignorant comments! I can relate to this too- I use to hide from our ‘helpful’ visitors.

    So many will tell you time heals and it does. I just didn’t find those words very comforting at the time Claudia passed. But day by day, your heart will heal in the sense that the ripping pain, won’t be as severe, the pain will ease. You will learn how to live your life without Teddy being here on this planet, though he will always be by your side. Just try to take things slow, everything slow, it’s so hard to process this. One of my therapists suggested to slow my pace down, slow everything down, it was all I could handle and I think it really helped me, especially in the beginning. Just take one moment at a time, one hour, one day.

    I never thought we would make it through 1 day without Claudia, but we did and we have and she passed on just before the NY bombings in 2001. You both are amazing, never stop talking about Teddy- he will always be with you- and continue to share all your thoughts, feelings and pain with each other. It will make you still stronger than you’ve already demonstrated.

    Ed and I are so sorry for your loss. Our hearts are just overwhelmed with pain for you all. If you ever want to meet, I would love to help ease your pain in any way I can. I had some incredible, nontraditional therapy that was amazingly helpful that I would love to share with you. Let me know, anytime.

    We send all our love and prayers to all of you-
    Love Julie & Ed Smith

  18. Amanda May 8, 2014 at 4:36 pm - Reply

    Your son’s story popped up on my FB newsfeed (I’m originally from Scituate, MA). I started reading about him & about Menkes. I read through some of your journal entries on CaringBridge.

    I want you to know that you educated me about Menkes & now I know what to look for. I am a nurse on a maternity unit in NYC. It’s troubling that I had never heard about the syndrome before – it is clearly something that we should all be on the lookout for as the ones who see babies in their first hours and days of life. I will educate as many people as I can.

    My daughter was born the day before Teddy. I have no words for what you are going through right now… it sickens me. My thoughts are with you & your family.

  19. Bernadette May 8, 2014 at 7:29 pm - Reply

    Mary…I’m so sorry for your Loss!!! You are an incredible mother…..the mother of a super Hero….the mother of a beautiful little boy who fought so hard to stay with you! You can see in his bright eyes the look of love for you, and in his little smile that you own his heart! You did what you needed to have normalcy in your lives NO one should make you feel guilty! Everything you have done is for the LOVE of a child….your child your Sweet Teddy Fish! So I say FU social worker and FUMenkes!!! <3 B

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