Mabel’s purpose?

A friend was trying very hard to make sense of this all.  There has to be something good that can come out of this, right?  Why was Mabel sent here?  Everyone has a purpose, so what was her purpose?

Is there a lesson to be learned?  I sure hope not.  The lessons I can think of are: don’t be anxious about the little things.  Don’t take anything for granted.  Look how strong you are.  Why did I need to learn those lessons?  I know plenty of anxious people or people who don’t know their own strength- why do I need this education and they don’t?  It brings me back to what did I do to deserve this?  I rather not try to make sense of it- it’s just statistics.  Has to happen to someone at some point.  A numbers game.

A better way to help people process my situation is to look at what positive things have come from it.  I’ve already talked of new relationships, a better sense of compassion and the privilege of having the experience of pregnancy.  But I suppose this blog is another benefit.  When Mabel was diagnosed with Down Syndrome, I was eager to hear peoples’ stories of prenatal diagnosis.  I wanted to find someone like me.  Most peoples stories involved diagnosis at birth, because few people continue a pregnancy diagnosed with Down Syndrome.  Here is one story that can help with the lack of published experiences.  I worry that it may turn some people off- when you are given a diagnosis of Down Syndrome and you opt to accept the pregnancy, you want to hear how it turns out well.  This is not that story.  But I hope others can related to worries I had before the oligohydramnios and that part of my story can help them process.  Maybe it’ll help some people opt to continue a pregnancy with Down Syndrome.  That would be nice.

When I started this blog I thought it was merely interesting, or unique, to work in obstetrics and have a pregnancy complicated by Down Syndrome.  Little did I know how unique my situation would become.  To this day I have yet to find another person who had my set of diagnoses: baby with Down Syndrome, kidney failure, oligohydramnios and potential pulmonary hypoplasia.  But statistically there will be someone else out there at some point who shares these diagnoses.  I can help her.  My story is most similar to those with kidney agenesis (absence of fetal kidneys).  That is usually diagnosed 18-20 weeks, so their journey is different.  Some choose to terminate. Some choose to continue and then have a longer journey of uncertainty than I did.  But the feelings and the outcomes are the same.  So I join and contribute to that community.

And then there are those of you who read Mabel’s story and think a little differently about pregnancy, family and life in general.  I’m not sure how it helps, maybe you could tell me.  How has reading Mabel’s story made an impact on you?  What more good can come?

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18 thoughts on “Mabel’s purpose?

  1. Reading about Mabel has definitely made me think about how precious life is. Mabel was only here for a short time, but she had so much love. Even from people she never knew, like me.

  2. It helps. Goodness is helps. I’ve wanted to write here for a long time. I didn’t know how to tell you what a difference you’ve made in my life. I think about you and Mabel often.Reading your story has made me look at life differently, almost through a different lens. I’ve always been one to hold back when someone is going through emotional tumult…mostly because I’m a bit introverted, and I didn’t want to offend them by saying the wrong thing or possibly making it “worse”. Reading your story had changed the way I will forever act towards those who are grieving. I’ve never read a more honest account of grief and the journey it takes you on. I can’t help but feel that the words you’ve put here will help so many people in the future…those who are grieving, who think that what they feel is wrong, or less than or more than what it “should” be. You’ve so honestly portrayed that there’s no right way or method to grieve, and that simple fact is so, so helpful to those who are grieving themselves. Myself included.
    In short, this blog, your account, has shown me how important it is to love fully, openly, and without reserve. To not hold back from showing someone pure and complete love and support when they are going through the worst. To remember, acknowledge, and talk about the loved one’s that we’ve lost.
    Thank you for being so brave and honest, and please know there are people out there who are thinking of you, and Mabel, often.

    • This. All of this. I have your blog bookmarked, I come every day to read your story. Mabel’s story. It fills me with love, and makes me realize that there are people, like you, in the world, who love so completely. And that is amazing.

  3. I absolutely hate that you’re having to walk down this path. It stinks. But I want you to know that Mabel has made an impact on my life. Reading your honest words as you walk through this grief has had an impact on my life. This world is full of people who are broken and hurting but are just putting on the mask of “everything is ok”. By sharing so honestly and openly about how you’re feeling, it makes me feel a little less afraid to be honest and open to the people in my life. It has changed the way I will respond to people who have lost children. Thank you so much for sharing Mabel’s story. For being open and honest. For being real. Mabel’s short life has forever changed mine.

  4. I read your blog every day, just like the other people who have commented. I’m 22 with a long-term boyfriend, but not married and no children for a while. Your blog has really made me view pregnancy and children differently; no one ever thinks about those whose pregnancies are not easy and wonderful all the time. Many of my friends are having children and I now understand a little more how lucky they are to have “the” pregnancy experience where everything goes the way it should. If/when I have children one day, I will remember this too.

  5. Perspective. Exposure. Compassion. Those are just a few things Mabel’s story has taught me. Every day that you share your story opens up a new chance to help someone learn.

  6. As unfair all of this is (and it really is) maybe her purpose in life was to touch and move and teach so many other people like I have been touched and I see a lot of other readers here have as well. Why her though? Why your sweet baby girl? I don’t know… but she WAS here and she HAS impacted so many. She DID/DOES have a purpose and that’s so great to know and feel and you must be so proud of her. I’m proud of her and I don’t even know her. And I’m proud of you. It sucks. A lot. I don’t have babies so I can’t even begin to imagine the full depth of pain. But I do like to believe that we all have a purpose, no matter how short or long our lives are. Much love <3<3

  7. I read this almost every day also. It isn’t easy to hear your pain but I just feel I need to validate Mabel’s life in this way. I have learned so much about how to approach those with a complicate pregnancy and/or loss. Thank you for your honesty.

  8. Meghan, like the other people who have commented here, I read all of your blog entries. They pop up in my email and I devour them eagerly. I don’t know how you pinpoint beautiful Mabel’s purpose, but I think she leaves a legacy of greater sensitivity, kindness, compassion and love in all those who know of her. These wonderful attributes will be yours as a midwife, someday when you encounter a patient who is traumatized by a prenatal diagnosis that no one can comprehend but you. When those of us who have read your blog meet someone with a child who has Down Syndrome and we’re not afraid to talk to them and their amazing child, and understand that they are thrilled that their child is with them, that is her legacy. That people who have heard of Mabel don’t take for granted the extraordinary, great fortune of family, that is her legacy. And all of this that is the story of Mabel is brought to us by you, her mom. You have enlightened us through Mabel to aspects of the world that we overlook everyday and perhaps that begins to explain her purpose.

  9. Mabel has shown me how to be a better midwife and nurse. Your honesty has given me insight into how I can better care for women with a prenatal or postnatal diagnosis and how I can ensure I have a positive impact on a mothers story. Im so sorry you had to say goodbye to your beautiful girl but she will live on in the greater compassion, love and empathy we all will have for the people who’s lives we touch in the future. I just want you to know that Im sending you strength for your return to work and I think of you and Mabel often.

    • I second this, Meghan. When I next have a patient faced with a loss situation- because as much as I hate to think it, it’s not as uncommon as people like to think- I will send them here so they know they’re not alone on their journey. I am so sorry for what you and your husband are going through.

  10. I’ve been reading since Roo posted a link on her blog. I am so, so sorry for your loss. I’ve been praying for you, and although I don’t know the reason why mothers go through the loss of a child, I know that you sharing your story is helping someone else out there who is going through a similar heartbreak. My best friend lost her daughter shortly after birth, too, and I just am so sorry that anyone has to bear that kind of pain. I make jewelry and if you would like me to make you a necklace with a Swarovski crystal in amethyst purple to remember Mabel by, I would love to do that for you. I know it is a small thing to offer, but if I could do that for you, I would be happy to do so to honor your sweet daughter. I would just need your mailing address and I will send it out. If you would like me to do that for you, just email me: theprettybee@gmail.com

  11. It’s hard to put into words what Mabel has done for me, but I will try. I cried long, hot, hard tears the day she was born and died. I think about the three of you every day. You have shown me how to be more compassionate. What to say, what not to say, how to react, how to love. My compassion won’t fix anything, and that’s okay. But I’m here, reading your blog, thinking about you and Mabel and your husband. I try to be grateful for the blessings I have and intentional about my life. It’s hard to read your blog (so many tears), but I still look forward to it. Still here, still reading.

  12. I’ve been thinking about this and agree with the above replies. It occurred to me today how Mabel’s purpose will become more evident throughout your life. I ran into a woman who started the non-profit that has paid for all of Oliver’s medical and surgical expenses. The organization has literally kept our family from losing our house. Oliver ran up to her and said, “Hey! I’m one of Jack’s kids!” Her son Jack died 10 years ago when he was a baby. She hugged me and I started to cry. I told her I embarrassed I was so emotional. She said, “It happens all the time. We are just having a little Jack moment.” Mabel’s life is already making ripples affecting and helping people all over the world. Her impact will only grow. I’m sure you will have many “Mabel moments” in your life.

  13. I am so sorry for your loss…the pain of losing a child is unbearable. Mabel’s story and your experiences are helping me navigate my own grief right now. I lost my son Alex Julian at 32 weeks when his heart stopped beating. We also found out at 13 weeks that he had Down syndrome. We knew the statistics of pregnancy loss but we went through the pregnancy optimistic he would be fine. All of my scans showed a good heart and no other health problems, so we were shocked when we lost him. We still don’t know why exactly he died but the docs attribute his demise to trisomy 21. It has been a little over 7 weeks since I last held him in my arms and his due date is this Friday. This week has been very hard for me and your posts are helping me get through it. Thank you.

    • Oh I am just so so sorry about you son Alex Julian. My heart just ached when reading your comment…and it has continued to ache since. I want to just scream at the world when I heard your story- we are so similar in some ways. We are the minority. We said YES. So few people choose to continue a pregnancy once given a Down Syndrome diagnosis. so few. it seems only right that if we make that brave, heartwrenching choice, that we should be rewarded with a living baby with DS!! I still cannot seem to get over this injustice. I’m learning in some messed up way to accept the fact that babies die. I get that, I have seen it for years before my own did. THe unfairness in that. But really- to do what was hard already, accept a DS diagnosis, and work all through pregnancy to prepare- to give up certain dreams and adjust to a new reality- only to be forced to do it again when those new dreams and realities are snatched away???? oh, how very very unfair. You are an amazing person to have taken the journey you did. I remember celebrating those big ultrasounds! (no major birth defects? normal heart? woohoo!) I thought I was int he clear. oh cruel world to throw us such a curveball. my heart is with you, especially in these early days. I’d love to hear more about Alex and what a special boy he was. sending many kind thoughts your way…

      • Hi Meghan,

        I’m sorry it took me so long to get back to you. I’d been working on a memorial website to honor Alex Julian’s short life. I wanted it live today in support of World Down Syndrome Day. Check it out at https://inlovingmemoryofalexjulian.wordpress.com to learn more about him and our journey. I was inspired to write it after reading your posts.

        Today has been a tough day. We went to celebrate the day with the local DS organization and saw many happy and smiling faces of children with Down syndrome. It made me sad and happy at the same time. Like you, I feel only partially in the club and wish I could be 100% in.

        I look forward to your future posts.
        Cheers,
        Julie

      • I just spent some quality time reading Alex Julian’s whole story. There were times I was shouting out- yes, me too! (I too had a doctor who insisted on “lecturing” me about how difficult it would be to raise a child with DS despite the fact I made it clear I was committed to the pregnancy) and other times wanting to hug you! (no, it’s not your fault at all- had you had more monitoring, gone in again, insisted on anything, things would have been the same. our babies are gone in an instant- for some/or no reason at all). Thank you for sharing his story from the very beginning. I am totally impressed you celebrated with your local DS organization. It’s so hard- being there, but also sort of not. We did our local buddy walk after Mabel died and it was heartwarming and hard- picturing the what would have been. ❤

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