This is what I've been thinking about (long) — The Bump
Special Needs

This is what I've been thinking about (long)

I don't know why I've been thinking about this a lot lately- maybe because I'm still struggling to accept having a SNC. But I feel like I need to understand why this happened to me when I did everything "right" to have a healthy baby.

I'm a very rationale person. I am spiritual but not religious. I do believe in God (maybe) and have in the past toyed around with the idea that everything happens for a reason vs. we are the masters of our own destiny. I use to believe in Karma and have always thought that I had a guardian "angel" that watched over me. But since having Marley, my beliefs have all gone in the garbage.

Karma? I have spent the last 4 years as a nurse helping infertile people have healthy children. So if Karma exists I should be one of the luckiest people in the world. Guardian angel? Not anymore.?

Friends, family and strangers have all attempted to offer reassurance (probably more to make themselves feel better than to make me feel better). But as an answer to my question of "Why me?" I have received the following responses: (Let me know if they sound familar)

1. It was God's gift to you.

2. Babies choose their parents and Marley was so wise to choose you.

3. Things happen for a reason and this will make you a stronger person.

Here are my problems with these rationales.

1. What if there is no God or what if I don't believe in him/her?

2. So you're saying that babies choose abusive parents too?

3. I had a friend whose 2 young daughters died in a plane crash. She was completely destroyed and almost 10 years later, still struggles. I don't think there is anything positive that can come from losing your child.

See? I can't accept any of these rationales and I would say it even drives me crazy to hear people try to explain why I have a SNC when they have no idea what I'm going through.

So how have you accepted the fact that you have a SNC? Or do you still struggle too? ?

I know this post comes off sounding like I'm very bitter. And I am. I love Marley dearly and love being a mom but this sucks. It REALLY sucks.?



Re: This is what I've been thinking about (long)

  • Isaac is almost and I struggle too - it is sooo hard.  I think I cried every night for at least the first two months.  I don't think anyone around me knows how I feel.  I get offended so often by stuff that people say when they are trying to be supportive, but just don't know what to say. 

    I really just prayed throughout my pregnancy for a healthy baby and a happy baby.  I am a religious person and it is hard to not be bitter - but I just have to stay happy and positive for my child.  I have to believe that I don't think that God made a mistake here - I do believe my baby will be happy if I raise him to feel happy and if I'm happy.   It is weird to say this - but once everything went wrong with Isaac - I truly felt alive for the first time in years.  I appreciate the little things with him so much now - and I love my husband more than I ever did before.  I feel blessed by this child, even though it is the absolute hardest thing that has ever happened in my short life.  I don't take anything for granted these days thats for sure.   

    When bad things happen to me - its like I can deal with it better.  But this happened to a purely innocent baby.  That is so hard.   I got so bitter when I would go to the NICU and have to pass a girl who just had a completely healthy baby in the regular maternity ward who just went out for a smoke break.  Or all of the people you see who are on drugs and had no problem having 4 or 5 kids that they can't support.  The only thing that helps me with that is to think that if one of these people couldn't take care of a special needs child.

     I'm sorry for writing a book of a response but I understand where you are coming from.  I appreciate you being on this board - and you know that by going through this - you are helping out other people by sharing yours and your daughter's experiences - maybe you will meet other people with babies with DOOR syndrome who you will touch by sharing with them what all is going on with Marley. 

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  • I meant to say he's almost 4 months. 
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  • I cannot get over it either.  I keep thinking of what I could have done differently and all the "what if's".   I feel the same way and no one understands what it is like unless they have lived it themselves.  No matter how hard I try to explain it to others- they just don't get it.  And probably never will.  I used to think that praying would make things better.  Well, I prayed that my babies wouldn't be born very early- that didn't happen.  I prayed that despite being born early that they would be ok and not have any long term problems- that didn't happen.  I prayed that God would help me understand why this all happened- and so far that hasn't happened.  It seems I pray for the well being of my babies and all I get is my hopes up.   I used to think there was a guardian angel watching over me (us) and karma and all that~ but it is so hard to believe in when sh!tty things happen to innocent babies and good people. 

    I guess we just have to take it one day at a time, and all I can do is try to think positive (although it is very hard these days).  I have to be happy for my babies- I don't want them to grow up with a mom who is bitter at the world.

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  • I dont have a SNC but grew up with a brother who had a very broad spectrum of needs.  It was frustrating even as a sibling and I cant imagine what the feelings would be as a parent trying to make decisions about the very unknown.  My family is religious and I think the Lord provided peace and sanity for my mother and father. I remember my mother in hard times that felt impossible for my brother and our family saying to us that the Lord knows us better than we ever could and he would never give us something we can't handle.  It seemed so true because everytime it felt like it was all we could take we got through it and moved to the next thing.  The Lord never gave our family more than we could get through together.  Also, my mom use to say "who are we to worry".  This meant that we shouldnt flatter our selves enough to worry because God knew better than us anyway and it is his job to worry because it is really all in his power and not ours.  This freedom to let God do the worrying enabled my parents to focus on what they could control like advocating for my brother and moving forward with the progress he was making reather than sitting around wondering when more would come!  I would encourage you to find your Faith or something to place your fears and worries into.  I can promise you that you are stronger than you think!
  • I know what you mean.   I have been thinking "why me?" a lot lately.  It seems like no matter what I do for my son, it is never the right thing. 

    And people say those thinkgs to me too.  The other one I get is "God only gives you what you can handle"  OH yeah, then why do I sit and cry some days and nights. 

    Sometimes, I wish God wouldn't think that I was so strong.

  • I'm sorry you're having a hard time.  It's hard for me to read that. 

    First I will say that I have similar spiritual views.  Using the word "God" doesn't get very far with me, either.   A long time ago I came to the realization that if I didn't have anything inspiring and original to say I shouldn't say anything at all.  I wish the people spewing these cliche's would adopt the same idea.

    I'm sure you've seen the essay "Welcome to Holland" (if not I would be happy to post it for you).  This was the way that I started living after the shock of Drake's issues settled.   My life has changed 100% since Drake was born and I forced myself to realize that there was nothing I could do about it.  I cherish every moment of my son's life.  It also doesn't hurt that I have an amazing support system and DH and I have always been able to cry together.  I still have a very hard time watching my son go through more surgeries than my entire family put together and trach changes every weekend and not being able to grab toys with both hands.  The pain is still there but I concentrate on the positive things.

    Also, instead of letting people pitty me because, in their eyes, my son isn't "perfect", I pitty them because they don't know how to appreciate what they have...... I do!    

    I hope some of that helps and I hope you can get to a place that you are comfortable with.  You might never know why this happened to your sweet little girl but at least you have her! **hugs**


  • I tried posting last night and my laptop died...I forgot to charge the battery.

    I too have had days where I question "Why me?". However, it's just a question. I too like some of you don't have a HUGE belief in God. But I do have FAITH. Faith in myself, faith that things will work out and faith that I am doing the best that I can.

    Relationships have changed since Cash was born and since Beau was diagnosed with Autism. When Cash was born I was always told he would be okay. When I learned of his diagnosis I cried more that I had wasn't okay and still isn't to this day. But today I accept it...and always remind myself that it could be worse. I have expirenced a loss, two for that matter and I am so grateful for my babies. I no longer have the friends I used to have, the money I had or the luxury to do all that I would like on a given notice, but I get to spend each and every day with my boys and I relish in that.

    I have my "why me" moments and often call my parents. I imagine that they too have "why my daughter" moments. So I feel that they can relate more than most. Curtis is like some of you and doesn't believe in anything any more and questions "why me" frequently. The way I look at is that if both of us spent all the time wondering "why me" we would be stuck in a vicious circle. I always say I had two choices to lay in the bathtub and drown or get up dry off and enjoy the day.

    Each day brings new challenges as a mother, partner or friend. I personally realize that I was given what I could handle and when I thought it was to much 9 months ago...I look back at how far all of us have come. I try to teach my boys about life, love and diffuculty cause we all know life isn't EASY. I think we all were (my family)  taught an important lesson on humilaity. Kai (4) knows Beau sees the world differently with Autism and that Cash is so special to be able to breathe through his tube (trach).

    I hope that you find your comfort. It does take awhile, but it really is amazing once you do. I honestly would probably be SOOO much more devestated if Cash had been my first. I have had challenges with all 3 of the boys and since I have more than one I feel that I had to move on quicker...if that makes any sense.

    I truly think that once Marley hits milestones as far as sitting up, her first tooth you will reach a comfort. In the beginning I marked everything by holidays to which Cash spent all of them in the hospital..I am slowly forgetting the dates...time is healing my wounds.

    Lastly, thank you for just being so honest with the way you feel.

  • My DD has Turner's Syndrome and is almost 3 yrs old.  During her first 18 months, I had a lot of "why me" and "why DD" moments. I would try to rationalize but I would get nowhere and it would drive me insane.  I think it's normal to have those feelings, and it was part of my process in accepting DD's condition.

    I'm glad that you posted this, and I appreciate your honesty.  It's good to have this board to vent.  And I know it's hard to pull yourself out of those dark "why" moments, but I hope that you will be able to soon.

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