Seventeenth Through Twentieth Months

I really haven't been doing much journaling lately; I just haven't felt the compelling need that I used to. So most of what I am putting in here is from emails or posts on the Trisomy 18 board. And that's fine. But I want to include these things to show where I am now in my grief process. I am certainly not "over it", but most of the hard times are much more brief and not usually "intense" enough for me to feel the need to write about them. They still occur, but more often they fit in with life instead of directing my life. And that, to me, shows that I am healing.

Thursday, January 1, 2004

I've often wondered if I would have honored God at all in this if we hadn't known ahead of time and Abigail had just died at birth. Or even if we had known and she had been stillborn. After the initial anger, we turned to God and held onto hope. And we received so much joy when we didn't expect to. God couldn't possible have been more merciful to us, so what do I have to complain about? But if it had been sudden and unexpected, what would I have done? It would have been a lot harder to be thankful for what we did have - AT FIRST.

And that's what I've come to realize - at first, it is much harder for those who didn't expect their loss to keep their faith. They have more anger and questions, and less peace and joy. But after a while, it all comes together. After a while it really doesn't matter if we had minutes, hours, days, or no time at all. It really doesn't matter if we knew or not. It really doesn't matter if we got a particular picture or did something specific. It does at first, but not later. And that's what I think happens spiritually, too. The suddenness may affect faith, but in the end people end up where they really were anyway (and sometimes we find out where we really were).

Although, along those lines, I have felt very angry and betrayed spiritually at various points - not so much by God but by other Christians who don't have a clue. All the trite, "spiritual" comments they made, although many were true (she's in a better place, God will comfort you, blah, blah blah), were not helpful because they weren't coming from the heart. And I was (and still am) irate about those who think that the fact we didn't "get over it" right away means our faith is lacking. If we really had faith, we wouldn't be angry, sad, fill-in-the-blank. People didn't say that but I could tell that's what they thought.

Wednesday, January 14, 2004

I just don't like these waves of emotion. Went over to K.'s for supper and I was playing with her son who's almost 5 but smaller than Sarah. I was grabbing him around the waist and flipping him over and then K. came running up and threw himself on the floor at my feet laughing so I would do it to him. He's just SO CUTE and usually its fine but sometimes it’s just like a knife in the heart. That, coupled with seeing their latest family portrait on the wall almost made me start crying out of the blue. Sometimes the unfairness of it all is just overwhelming, you know?

Thursday, January 15, 2004

Overall I feel like I'm doing really well, but the newborn thing just throws me. I am so jealous of those with healthy babies. Just thinking about it brings back that pain in my chest and that sick feeling. I don't want anyone to have to go through this, but I feel so cheated when I see healthy babies. I just wish everyone would stop having babies for a while!

And since I will not be having any more babies, I think I am also grieving the loss of that experience. The whole nurturing instinct was abruptly stopped when our babies died and it now feels so incomplete. And we won't ever be able to finish it. I have wondered if that's why I seem to still be so affected by pregnancy and newborns when many others seem to be past that. I wonder if whether or not we are going to have more children affects the grieving process?

So all "logic" said that Abigail was our last and I know it's the right decision for us. However, that doesn't make it any easier to accept. I wonder if that decision is why I still struggle so much with pregnancy and newborns. It's not that bad anymore with strangers or babies I see in the store, but with people I know, it is just really, really hard. If I were going to have another baby, would I have moved past this by now?

Saturday, January 17, 2004

During the past year, Steve and I have probably had both the worst and the best relationship we have ever had. There were times when we both wondered how we could continue like this. But when it got really bad, we would make the time to get away together to reconnect because we really wanted it to get better. And the thing that helped us the most at those times was realizing that "Next year at this time, it won't be like this". We didn't know what it would be like, but we knew it would change. And once we realized that, it really helped because then we weren't looking at "how can we continue to live like this (forever)" but "how can we get through this until it gets better". That helped us realize it wasn't US that were really changing, but the grief, so it WAS going to get better. It all came back to taking it one day, one hour, one minute at a time, even between each other.

And I have to say we were right. Now, a year later, it is TOTALLY different. The grief is different - the pain is not constant and all-consuming anymore. Our relationship is different - better than ever. We have lived through this awful thing and have learned to love and respect each other even more. I would have to say our love is deeper than ever and that as a couple we are closer than ever. That is one of the gifts we received from our daughter and this whole experience.

January 24, 2004

Steve got me this floor lamp for Christmas that has spots for 4 photos on it. Until today, I hadn't had time to print out any pictures for it (I told Steve that the family in the pictures was better-looking than ours anyway, so I thought I'd leave them :-). Anyway, I selected pics of each of the 4 of us. I didn't feel the need to have Abigail in there too. Not a big deal, but it is, because it's another indication of where I've come to now. (Not that I'm taking down any of her pictures, though!).

January 29, 2004

I keep getting really weepy and just missing my baby so much today. I was at K,’s house and her 2 year old just imitates his 4 year old brother at every turn. It hurts so much that my daughter Sarah doesn't have a little shadow to follow her around, too. It's not fair.

February 19, 2004

Sometimes reading the board just tears me up. I mean, people are so thankful for the 18 days with their baby, the 18 hours, or the 18 minutes, or even just the honor of holding them. This is SO WRONG! It's not supposed to be like this!

March 29, 2004

This past weekend I spent some time reflecting on things. Sarah was singing away to Veggie Tales in the car and I turned around and laughed at her and kind of joined in and she said, "you don't have to be so happy". Wow, there were times I never thought anyone would say THAT to me again!

Exactly one year ago I was in possibly the darkest time of this entire journey. It seemed that every day I was getting hit with more grief work, like it or not. C. had her baby, and I fell apart at work. Then my husband and I went away for the weekend, and the next morning I fell apart again. And I vividly remember him saying to me, "it won't be like this next year. It will be better."

And he was right. The contrast between last year and this is amazing. All the grief work, though painful at the time, has paid off.

April 2, 2004

A year ago, even some months ago, I felt envy for those with “happy lives”. But more and more, I am feeling different. Indeed we now have the knowledge learned only by the tragic loss of a beloved child. But more and more I now feel that I am the one who has been blessed. I never would have chosen to go through this pain, but now I know that I wouldn't want to go back to who I was before or who I would have been if Abigail had been healthy, BECAUSE of the knowledge I have gained. I am so much deeper, kinder, wiser, more loving and closer to God because of this experience, and I almost feel that those who haven't received this gift should envy ME. The grief was so dark that the joy now is more brilliant and more colorful than ever before.

Don't get me wrong, there are still days when I don't feel this way, but overall I think I can now say that I have been blessed by God beyond measure through this experience. God is merciful and compassionate, and He has wonderful things in mind for His children!

April 3, 2004

I was privileged to be able to speak at our Ladies Inspiration Day at our church. The theme was based on the story about how a man saw a butterfly trying to get out of the cocoon and cut it open in order to help but the butterfly never could fly because the struggle of getting out of the cocoon was what gave it the ability to fly. So our topic was "Spreading your wings: from struggles to strength" and I got to speak in the morning about struggles. See the text and hear the lesson beginning with Job's Struggle.

I was so excited to be able to share some of the very things we are discussing here with the ladies. Primarily I used the concept about getting our heads and hearts in balance and I looked at Job - how he had his head in the right place throughout but we often overlook the struggle he had in his heart. It took him months to work through it. And I also talked about his friends - what they did at first that was SO HELPFUL and what they did later that wasn't - some of the stupid things they said. And even Job said his friends deserted him - and I talked about when friends disappear and also when they stick around but never ever mention the subject again - might as well disappear!

And I talked about the reward at the end - the gift that we receive after going through this - how we change and can grow closer to God. For a long time I was still in the cocoon. But I’m finally breaking out of the cocoon and flying.

I thought it went really well. We didn't have a really big crowd (no big-name speakers, LOL) but it was really nice. I was surprised that when I got there and was getting the tapes ready to record, when writing on them I was shaking. I was more nervous than I expected to be - it would come on in waves kind of like grief does. But when I got up there I did OK. But I think I talked a little faster because of it. It came in around 45 minutes I think - I didn't really pay attention. But the other speaker was actually longer, so I don't feel bad at all!

I think God really used the lesson to touch people. So many people came up to tell me how much they got from it, and a couple really connected with it. Of course, it was an emotional topic, so people are more affected by that, and there were a lot of tears at various times, but I didn't get emotional. I guess I had gone over it enough beforehand that the emotional impact of it was gone.

Of course, those dealing with grief related the best - a widow of about 18 months started telling me how hard it still is, and the adult daughter of a man in our congregation told me it was right on - how she felt when her mom died of cancer. And several were talking about how they had never heard Job preached that way - they didn't know that was all in there. One woman made an interesting comment - that probably a man would never preach it that way because they just don't see those things. Possibly true.

The minister's wife from a neighboring congregation came over to me during lunch and introduced herself and said that when she lost her baby 23 years ago, she wasn't allowed to talk about it. She never got to hold him (SB @ 6 1/2 months) and no one in the church would let her talk about it - they kept changing the subject. She started to cry while talking with me and said she was amazed at how far I had come in this short time. I told her it was because of the support I did get, that she didn't get. That's really sad, that she hasn't been able to heal because of how she was "forced" to deal with it. She said as the minister's wife, she had to give support but not ask for it. I am so thankful for the folks at our congregation, because they didn't do that to me.

Anyway, I was overwhelmed by the positive response, and I felt really good about how it went. Afterwards, I was just exhausted, very drained. I guess I understand why Steve likes to take a nap on Sunday afternoons when he can.

April 11, 2004

Last Easter was just AWFUL for me. But this year is much different. The kids wrote notes and put them in eggs for Abigail, like last year, but this time my feeling was more wistful, not that awful pain. No tears. I enjoyed Easter this year - without even "trying".

Every "second" holiday has been much easier for me than the first was. The rawness of the pain has worn off most of the time. In fact, most holidays now I don't feel hollow but totally overflowing with how much I love my living children. It is hard to describe but I have become that (annoying) doting mom that just fawns over everything my kids do or say. Sometimes I just feel so much joy because of them that I can't stand it. And I KNOW that is a gift from Abigail. The darkness of the grief has enabled me to feel joy much more deeply and appreciate it in its fullness.

Recently I have had a few events - my birthday, Ladies day at our church, Easter - where I have reflected on what it was like last year: AWFUL!! and what a contrast it is with this year. Part of me can't believe its only been a year, another part of me feels like it was an eternity. I NEVER would have believed it if you had told me last year what it would be like this year, but here it is. I spend a lot of time laughing, and it feels so good to laugh after spending so much time crying. Joy after the sorrow. Healing after the pain. Seeing God in a way I never have before.

April 13, 2004

Posted on the board in response to a question about how to end our childbearing years with a loss.

Your question is one I have also struggled with. Before Abigail was born, we were pretty sure we were only going to have two children. And we felt good about that. But when I got pregnant with Abigail, we were thrilled. Three just seemed to be the perfect number for our family. I remember thinking that absolutely, we would have no more than three. And that thinking continued even after Abigail's diagnosis. Part of it was that I was 39 when she was born, and part was that during my last two pregnancies my bad back really gave out. During my pregnancy with Abigail I was literally confined to bed for the last 3 weeks, and so I really don't think my back could handle another pregnancy.

And so we decided that we weren't going to have any more children and we have closed the door on that option. My head knows this is the right choice for us, and so I have no doubts about that decision. But regrets, yes, I have them. My heart is not ready to accept that decision, and I regret that my last experience of pregnancy and childbirth was abruptly ended before I got to do the nurturing that comes naturally. I know it is hard for many people to say goodbye to that phase of their lives, but when we don't get to do it gradually, as our youngest grows up and "grows out" of things, it is excruciating.

And so our grief over losing our daughters is greatly complicated by a second grief. We are also grieving the loss of having another baby. And, like our daughters, we will never get that back either. It sure stinks to have to grieve them both at the same time.

Since my decision was made over a year ago, one might assume that my heart has had more time to try to "accept" this reality that you are just now staring in the face. And perhaps in some ways, it has. But it was through the same process as grieving the loss of Abigail - a lot of work - grief work. Tears and sadness and prayer and anger. At times I didn't know which I was grieving more.

I wish I could say that I've resolved it, but I can't. I think I am farther along in my grieving over Abigail's loss than over the loss of having more children. I am still VERY uncomfortable around pregnancy and newborns (getting that stupid knife-in-the-chest pain), and I admit even hearing about SPALs on this site is sometimes very difficult as well because the joy and hope that these new babies bring into their mom's lives is something I will never experience.

At the same time, though, I am often overwhelmed with joy at my other children, and I realize that those who lost their first child have never gotten to experience some of the things I have with my kids. Pregnancy and birth for them will never be the same time of pure joy that it was for me with my older kids.

So how do I deal with it? I cry. I grieve that loss. And I think you'll have to grieve it, too.

And I wonder if closing that door may have helped me grieve Abigail's loss, because I had no loose ends to tie up about possible future pregnancies - I was able to focus only on grieving her loss, and I think I have experienced a lot of healing because of it. But I have no way of really knowing that, because my experience is all I know.

Sorry this was so long, but basically, it just stinks to lose a child, whether it's our first, middle, last, or only child. No path is easier; each has its own special challenges.

You aren't going backwards, you just need to grieve another loss. And unfortunately, it is hard, painful work. But you can do it.

Tuesday, April 20, 2004

This week we are having a gospel meeting at church. And a member of our congregation had her baby last night, so they announced it tonight. I was OK with it, until as soon as it was over, the proud grandpa, sitting right behind us, pushed some pictures toward me as he asked, "do you want to see pictures of the little one?" Actually, I didn't, but he wasn't really asking; he just was so excited he assumed I would. And I looked quickly and said, "he's sweet," and handed the pictures back. I thought I pulled it off until a few minutes later, helping Sarah pick up her markers, I started sobbing (quietly). That surprised me. In fact, my whole reaction kind of surprised me.

But I think the root of it is that soon I would want to see the pictures. And when she brings him to church I will want to see him. But when I'm ready. That is, when I feel the need to do it, not when I'm suddenly confronted with it and have no choice about it. I think that's what bothered me tonight - I wasn't in control, and I didn't get to react like I wanted to because it took me by surprise.

I don't think most people realize just how hard this is on us. I cried a good part of the way home because I just couldn't get the image of the happy mom holding her new baby out of my head. That's all I wanted - to be like that with my baby, too. It just stinks that I couldn't.

Thursday, April 29, 2004

It is very strange, how grief works. Overall I am doing really well. For the most part I feel good, happy. I am OK with not mentioning Abigail all the time when I refer to my kids - although I usually still include her mentally. I really do feel she is with me, and it feels really GOOD to NOT have to mention her, because I do know she is with me. I truly AM thankful to God for this experience: the gift it has given me, and I really wouldn't want to change it.

However, it is still really hard dealing with pregnancy and newborns. At those times I feel like I'm going backwards again - and the grief overpowers the feeling of the gift. Last night L. brought her baby to church. It just caught me by surprise. I guess I didn't expect them until Sunday. And a few times when he started to cry, it just pierced my heart. I had been focused on class and forgotten about him until he cried, and then it just made my heart pound. And afterwards, I knew everyone would swarm around him, and I turned away. I wanted to go see him, but not with everyone else there. The hardest part is seeing everyone fawn over the baby - something I so badly wanted for Abigail. It's been a while, but last night I felt myself wearing that fake smile again. Is it as obvious to everyone else as it feels to me?

And by the time the crowd cleared and I was considering going to see him, they had already put him in the car seat. So I missed the chance. Anyway, as they were heading out, L. came over and greeted me and gave me a hug. I asked how she was doing (she had a c-section) and we talked for a minute about it. I am so thankful she is so sensitive to my feelings. She doesn't get upset that I am staying at the fringes, and she doesn't "forget" and foist him on me.

After they left, I started cleaning up some of the kids' things, and once again I began to sob. K. came over and told me this is the worst part, that it would get easier. I do need to go see him and hold him, and I will. And I will try to explain things to L. - that I'm not avoiding her; it's just still painful. And after a little while, I will be ok with both her and the baby, but it may take a while.

It is just so strange to have these mixed feelings: true, deep joy and thanksgiving for the gifts I have received while at the same time feeling an incredible loss, emptiness, and jealousy. I have learned, though, that it's ok to feel the loss and that I need to let myself feel it. As far as I've come, there's still a long way to go.

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