"You get what you pay for, but I just had no intention of living this way." -Counting Crows

Why We're Here...

My husband David and I delivered a stillborn Baby Boy that we loved, and wanted. Our first and only son, Logan, had Down Syndrome. Our daughter's smile is a little light in the darkness. She turned one year old three days after our sweet Logan tip-toed away on January 24, 2009. After 2 1/2 years we found out we were having another baby, whom we affectionatly called Rudy. Just shy of 6 weeks we found out Rudy was Ectopic. Rudy was surgically removed on May 26, 2011 delivering another blow to our already broken hearts.

Logan had Downs Syndrome

Tuesday, February 17, 2009

Logan had Downs Syndrome. I went for a follow up OB appointment today and that was the news David and I heard. Man, I can not even begin to put into words the feelings and emotions and thoughts that have been swirling around in my head all day. I felt a huge weight lift off of me when the nurse told us. I don’t know what that weight was. My initial reaction was disbelief. I’m thirty-one! Then I was cynical, because of course my baby would have Downs! I mean why not? Anyone who knows me knows that I “get” the weirdest stuff, so why not this too. Because, after all, that’s my kind of luck! Then relief, relief that it wasn’t something that could have been prevented (and wasn’t because of my neglect or the stupidity of my doctors), relief that Logan wasn’t in pain, relief that the odds of it happening again are 1% (a tad higher than if I hadn’t have had a DS baby previously, and my doc said he’d never seen a woman have 2 DS babies), relief that the doc feels I should go ahead and have more children, relief that my husband agrees, relief that it’s not something genetic that could show up in my daughter or be passed down through her to her kids, relief that it wasn’t something weird and obscure…lots of relief. And with that I feel guilty, lots of guilt. I’m not sure what I feel guilty about. But I feel guilt non-the-less. But I will say that knowing now what happened (I’m one of those people who NEED to know the details of everything) gives me a sense of peace. Perhaps it’s the peace I feel that makes me feel guilty. It’s not ok that Logan died, even if he did have Downs Syndrome, even if the general population would think I was “better off” to have him die than to raise a baby with such a huge handicap. Maybe I feel guilty because I’m afraid that deep down I might feel that way too. I don’t know. I don’t know what I am feeling other than a rush of incomprehensible emotions that are slamming into me one after another. I still lost my son; even if he was physically and mentally retarded, he was still my son. I lost all of my dreams for him, dreams that wouldn’t have come true anyhow being his condition, but I had those dreams for him anyway. I will never be able to look at a little boy and think “oh that’s what my little Logan would be like now” because Logan wouldn’t be like that, he’d be a little boy with Downs and in a totally different developmental stage. I won’t be able to wonder if Logan will look like his daddy, because though he would have features he would still have the Downs “look” about him. And that makes me sad too. I found comfort in those thoughts, thoughts about Logan being just like his daddy and looking like his daddy. Now I feel like I was robbed of those day dreams. I don’t know. I don’t know how much of it really matters in the grand scheme of it all. And I’m scared of what others will think and say and feel. I’m afraid to hear someone say “oh well, it was probably for the best since he had Downs” or “well aren’t you relieved you don’t have to raise a retarded baby?” I don’t want people to think I’m better off that he died so that I wouldn’t have to have a child with such a handicap. Because I don’t know that I’m “better off” now. I mean, lots of people with DS go on to have semi-normal lives. There are varying degrees of DS. I don’t know how bad Logan’s was. Obviously he had some major health issues because they killed him. Sigh, I just feel confused and now I feel very protective of Logan and the memory of him. I feel relieved that I KNOW what happened to him and that it isn’t likely to happen again, but I am so sad that he had such a problem. Anyhow, the doctor said we need to wait a minimum of 6 months before we try to conceive again. The “experts” recommend a year for emotional healing. I’d like to think that I want another baby. I’d like to think that I wouldn’t be a panicked stressed out mess during my next pregnancy since the likely hood of having another Downs baby is relatively small. Although the little voice in my head keeps reminding me that it was an even smaller chance before and it happened to Logan. I’d like to club the little person that produces that voice! I’d like to think that I’m not trying to replace Logan. I’ve somehow gotten it into my head that perhaps God will give me Logan again, his spirit, in another baby. Like the body was bad, so we’re starting over. And the logical part of me knows that is so unfair to the next baby, but the heart part of me, the one that wants my little Logan back, wants to believe that God gives everyone a second try…even spirits whose original bodies didn’t work out. But that’s like reincarnation, and I don’t believe in reincarnation. It’s odd what the heart wants to feel that goes totally against what the mind wants to believe. I can’t get the two inline, I haven’t been able to since Logan left me. On an upside I suppose that my anger at God greatly diminished today. In fact I feel a little foolish in his sight. There I go thinking I know what’s up with God again. I was so angry. I felt betrayed. Like God had pointed a finger at me and singled me out, like he was trying to teach me a lesson in the most horrible way possible. I felt like it was a drive by shooting, just a random act of violence against me and my very soul. Now, now I really do believe that God saved my little Logan from a life of suffering. Saved David and I and Aubrey from a life of heartache watching our little Logan struggle and suffer. My cousin’s little girl was born still seven years ago. She said this to me “Sometimes their quality of life is not worth it and God knows what he is doing.” And that really sunk in deep into my heart today. Logan’s quality of life wasn’t worth God giving him up to me. God knew what he was doing even if I didn’t. Don’t get me wrong, I’m still confused, and angry and sad that God would give me Logan in the first place if he knew that Logan was going to die before I even met him. Why that month? Why that egg? Only God creates life, and he chose to create it that month using that egg. I’ll never understand that. And knowing that God knew what he was doing doesn’t take the hurt away, but I guess it makes it a little more tolerable. I feel very confused right now. I’m not sure which way to go or how to feel. Logan was not meant for this world. A new friend I made in blog land who also lost her little girl in December has this quote written on her MySpace page “An Angel in the Book of Life wrote down our babies birth…and whispered as she closed the book “too beautiful for earth!” I love it. I’d like to think that Logan was too beautiful for this place. My sweet little angel. Oh, but it doesn’t make the pain go away. I had hoped that it would. Silly girl. I’m not sure why people say “try again…” like I screwed it up in the first place. Like my trying would yield different results. Like trying again would give me back the son I lost. There is no trying again. Logan was a one time shot. I tried, and he didn’t make it to me. The next try will be for a different baby, not Logan, as much as my heart wants it to be so. So trying again doesn’t solve a stinkin’ thing! Why do people say that? I will still feel like some one is missing. I will still feel a hole in my heart. I will still feel an immense sorrow for the son I had and so quickly lost. But I’m hoping that the small amount of peace I have today isn’t just shock. I’m hoping it’s a sign that I can survive this horror that has become my life as of late. That every day will get a little easier to be alive in, that I will feel alive again. That I won’t be afraid to have hopes and dreams, that I won’t continue to be afraid that God is hiding around the corner waiting to jump out at me. But I get mad, because I don’t want to see the good in any of this. There isn’t any good in my son dying. I don’t want to try and pretend there is. I don’t want to think that God gave us Logan to pull us closer together, or to teach us a lesson. None of those things reassures me or brings me comfort. I’m trying to just think of it as the luck of the draw. I drew the short straw that month. It was a fluke, a bad egg, a bad month. Sigh. This sucks. The moment I feel some light shinning is the moment it all caves in on me. None of the knowledge, hope, peace or reassurance in the world changes the fact that I had a little boy, and he died, and I will forever feel like there is a huge chunk of my soul missing.


carlamichelle said...

All I know is that it is ok and natural to feel all that you feel. People say the wrong things because they are afraid to say nothing and want so badly to make you feel better. You are surrounded by people who love you. Who ache for you and David and Aubrey for your heartrending loss.

Logan is your son. He wasn't damaged or broken. He was perfect in every way. His body wasn't him. It housed a sweet little baby soul and he is now in heaven, in a warm and comforting place. I can't answer the why. It's not fair or right. It is inconceivable that this could ever happen. To anyone.

You have every right to feel cheated and relieved and guilty. Just don't let the guilt eat you up. Logan loves you no matter what. He doesn't begrudge you a little healing.

Anonymous said...

Hi Heather...Julie again, here in Minn./Ty's grandma. Your thoughts just tumble, tumble, tumble in on you, don't they? There are several things I would love to share with you, but I KNOW that if I were in your shoes, and you in mine, I wouldn't give a single hoot about those things. So, maybe some other time, away in the future. I'm really thankful that you did get a little 'closure' on the probable reason Logan died. Doesn't change much, but it's something. My heart goes out to you and your family, and if we who are human and so fallable can care about a stranger's sorrow, then God, who IS LOVE, the author of love, who hates sin, surely feels your pain, too. I hope the time comes when you can lean into His arms and find a degree of solace there. :) You're in my prayers, Sweetie. JE p.s. don't understand what is wrong with my URL-what is that?? :) but my email is julsie72@aol

Jenn said...

Hi Heather,
It's been a few days since I checked your blog and my mom told me about how you found out about Logan's disability, his "cause of death" or at least a major contributing factor. Know how lucky you are to know what was physically wrong with your son, why he died, why God took him to heaven to be with Him. I am SO incredibly jealous of you but at the same time I am so incredibly happy for you. I know that all this new knowledge has brought on a whole new set of thoughts and emotions for you, but you will no longer have live your life wondering what happened, if it was something you did or didn't do, you know! I can only dream that God will somehow reveal to me what happened with my Ty as the medical community was unable to. In my eyes this knowledge that you now have is a blessing, a gift that most of us in the "club that no one wants to be a member of" will not ever have. Take care and know that I think of you often each day and pray for your comfort. Hugs!!! ~jenn

Icantletitgo said...

Jenn, thank you for your kind words on my blog. Thank you for pointing out that it is a blessing. I hadn't been thinking of it like that. But you're right. Not knowing was torture, and I am blessed that I know now. I am so sorry and ache for you and your family that you were not given the knowledge. It did help to bring me some closure, and now I am dealing with a whole new set of emotions. Regardless, I suppose, this just sucks no matter what! I had hoped I'd feel "all better" but I don't. My little Logan still died, and I'm still heartbroken beyond repair. Grief is something else isn't it? I hope that God gives you some closure, some peace, some knowledge...something. You sound like you have a pretty good relationship with Him; maybe He'll actually talk to you. That still quiet voice everyone talks about...I don't ever get to hear that. My mom says it's because I'm too busy talking over the top of him. She's probably right. I need to see his words in writing, or get bashed over the head with it. That's how I felt on Tuesday. Like God was screaming in my ear "I told you there was a good reason, you need to just believe me! I'm not out to get you!" Then I felt like an idiot. I was (maybe still am) so angry, like he was singling me out. Just taking my baby for no good reason, to "teach me a lesson" or whatever. It felt like a drive by shooting, just random cruelty. Now I think it didn't have a thing to do with ME! It was always about Logan. What was best for my little boy, not me. I couldn't see that before. God didn't see fit for my little boy to be here, and though I cry every time I say that, and I don't understand WHY he had to be so sick to begin with, it was never about what was good for me though, it was about what was good for Logan. And as his mother I want what was best for him, even if it sucks for me and even if it leaves me so damaged. I took Logan's death very personal. And I got mad at every single person who said "trust God" or "God knows what's best" or "He's in a better place". People just don't get that sometimes those words cause more damage then comfort. They can not even begin to understand the horror of loosing a child. I guess it makes THEM feel better. I don't know. Maybe that's why God gave me this knowledge. I was headed down a very ugly path with God. I couldn't see the compassionate loving God that I was raised to believe in. But I do now, at least a little. God was loving and compassionate to my son. I guess it doesn't really matter why Logan died, or what caused it...I guess the point was that GOD KNEW that this world was no place for my son to be, even if it didn't make sense to me, and I should have just believed that and trusted him from day one. I'm sorry that I didn't. I hope you don't have that anger and bitterness in your heart. Knowing what you know about Christ I am hoping that you don't "need" to know why God took your little Ty (by need to know I mean in order to find peace and not hate God the way that I was), but that you believe that God did what was best for Ty...not you. Believe that Christ knew that this place was no where for your little boy to be either. Find comfort in that. Knowledge didn't take away the pain or the loss. I'm not glad that Logan died, even if he was so severely retarded physically and mentally. The knowledge only changed my anger towards God. The knowledge only gave me a little more understanding. I still don't understand why God created Logan with DS, why he chose to create life that month with that egg. Any other month... I don't understand why God gave me Logan in the first place. I don't understand why babies ever die. I don't understand why it was my son, why it was me. Obviously I never will. I'm so sorry for you Jenn. I hurt for you in only a way that another mom in your shoes can. None of this is fair. I hope that you find your peace and your comfort. God knew that taking Ty and Logan was what was best for THEM, he was saving Ty and Logan. You and I, well we're collateral damage. God knew we'd come out of this wounded...but breathing. Keep breathing Jenn.

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