Thirty

Today is Halloween and also my birthday. It's funny how much expectation I can put onto birthdays and holidays - expectation that is often disappointed. So, of course, 30, pre-Sully, was filled with an incredible amount of building expectation. But, post-Sully, most of the celebratory hopes have been dropped. But, still I find myself with hopes and expectations.

Brad, who knows me so well, gave me a birthday "schedule" yesterday. It isn't full of big party plans and such but it is really perfect for me. He has scheduled me a morning walk and time to be in the house alone for reading and reflection. I must be old since that seems like such an incredible gift to me! He's even blocked off time for me to run around and do random errands - something I seem to enjoy that he doesn't really understand (which has led to several frustrated Saturdays together).

Already our "schedule" is off. I've opted for cinnamon rolls at home under the birthday balloons and streamers and sign Brad stayed up late installing instead of the breakfast at IHOP (which I also love but Brad can't stomach). I think, with Sully, and this day, I see that plans are nice but that life usually happens instead of our plans. Even on my chilly walk this morning I realized how much comfort a plan gave to me but that if I held it too tightly I would ruin it all with my demands and expectations. So, we'll hit some of our points today and not others and after 30 years and now Sully, I'm somehow ok with that.

Sully himself isn't part of my plan. My plan was for a third "perfect" child. But I'm thankful for Sully today, especially today, as he helps me to grow up. I'm glad he is with me as I have quiet moments "alone" but not alone. He makes me long for a time when I will know him and he will truly be made "perfect" in the most perfect sense of the word.

"Behold, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind...Never again will there be in it an infant who lives but a few days." Isaiah 65:17 & 20

"Your goodness and unfailing kindness shall be with me all my life." Psalm 23:6

My song today

O love that will not let me go
I rest my weary soul in thee
I give thee back the life I owe
That in thine oceans depths its flow
May richer, fuller be

O light that foll'west all my way
I yield my flickering torch to thee
My heart restores its borrowed ray
That in thy sunshine's blaze its day
May brighter, fairer be

O joy that seekest me through pain
I cannot close my heart to thee
I trace the rainbow through the rain
And feel the promise is not vain
That morn shall tearless be

O Cross that liftest up my head
I dare not ask to fly from thee
I lay in dust life's glories dead
And from the ground there blossoms red
Life that shall endless be

The last legal day

Today, October 24th, is the last "legal" day I could have terminated my pregnancy. I knew I wouldn't do that when the option was presented to me four and half weeks ago but I have contemplated it more than I ever thought I would. I have to remind myself, particularly today, that as there is no turning back now from this road, that God is indeed good and is faithful to his promises to me. I must believe not only that He is what He is but that He is actively seeking me and pursuing me with His truth and with His goodness. I believe He is jealous for my confidence in Him and now that I have let go of the confidence I could have placed in making my own "choice", He has to be faithful. I will not make it if He is not faithful.

I struggle the most with fear of the unknown. I tell myself that while losing a child in the womb is terrible, that having him be born and live for a time and then losing him would be even worse. I think this mainly because, selfishly, I can't even imagine how I would care for such a sick child, such a deformed child. I fear that I would not feel love for him and see in my heart that what I love most is beauty and (seeming)perfection. And now, here is a child that most certainly would not be physically beautiful or anywhere close to perfect. Also, I fear the tremendous strain it would be on me to care for such a needy child if he did live. So, not only is God laying bare my idol of superficial beauty but also the idol I have made of comfort and ease of life. I'm embarrassed to even confess these things but such is the truth of the ugliness of my heart. But the other side hurts too. The longer Sully is with me the more I do somehow love him. So, there is the fear of truly loving him and still losing him. So, I must let go of yet even more of myself, my love of control, my love of calculating what will happen. I, somehow, will not "win" in any of this. But I know I will be changed.

Places from the Past

I spend a lot of time wondering how I should be acting these days. Should I be tearful and full of sighs every minute of the day? How could I not be, my son is dying? Yet, I feel myself slipping into my 'normal' personality more and more these days. At first, it was a relief to be able to smile again, but now I begin to wonder - do I smile too much? Have I forgotten already? am I just living in denial?

This past weekend, I went back to where I grew up. Driving to Savannah with my uncle, cousins and brother I was at first quiet, but by entering into a trivia game my old personality traits - sarcasm and an onslaught of random comments - quickly bubbled to the surface and stayed. Was it defensive, denial, or just the ingrained patterns of my personality? I don't know - and I don't know if I should fight it or give in.

It wasn't until I broke away by myself and went to an old high school haunt that I was able to cry for Sully again. It is an old chapel in Savannah that once, long ago must have been the main church itself, but multiple new buildings have left it quiet and forgotten on the back of the property with doors that are never locked. A friend found it in high school, and a group of us had a few pretty powerful prayer times there. I have always viewed it as one of the places I have felt closest to God in my life. I knew when I went to Savannah that I had to get back there - I found it the same as I left it ten years ago.

Speaking into the dark - I prayed that Sully would make me become a 'real' person. I have lived an easy life - pretty much free of any taste of suffering. With the news of Sully's condition I have already begun to enter into life in a different way. I used to run from uncomfortable situations - if people had any kind of struggles in their life - but somehow now it doesn't seem to really matter. Always I have been scared of saying the 'wrong' thing, but being here now, I see how much I really don't care when people say the wrong thing. The situations are so much bigger than any words - right or wrong - that I find I have far more grace for people in my current state than I have ever had in the past.

I suppose I will continue to be my 'old' self in large groups - work, church, groups of friends, and the brokeness of the chapel will be reserved for groups of one or none. I think that like Heidi said, Sully has already, without a single diaper or cry, changed our lives more than any of our children - I just wish it didn't hurt so much.

Loving Sully

"Keeping your heart oriented towards Sully is like walking back into the surf and letting the waves grind you into the sand again. It was all I could do to keep returning to the water to be hit again with everything he was and wasn't. I never could look up at those moments. I think if I had, I would have seen the air full of droplets sparkling like diamonds."

I think about these words constantly. I hang on to them because they perfectly picture my heart and my struggle. I need validation in that struggle. I have punished myself for struggling because what "good mother" would ever struggle to love a child. But, the more I think about it, the more I know without a doubt that love, true and deep, is always a struggle.

I have been fortunate in my marriage. It did start with all the butterflies we hope for in our American ideal of romantic love but also has grown to a deeper level - what really is more like love than those beginning butterflies. Motherhood has been a bit different. I guess that first pregnancy has something similar to those butterflies - everything is new and exciting. You want a baby but really have no idea what you've gotten yourself into. I think many of us picture it being easy to love our children (before they get here). But then the sleepless nights come and tantrums and the nightmare of potty training and so on. I certainly have not always felt warm fuzzy loving thoughts in the middle of the mundane of life. But no matter what, Brad is my husband, and Ella and Zane are my children and I choose to turn back to them and to care for them and to lay my life down for them.

And now, Sully is my child, too. And it does feel like turning my face into driving rain when all I want to do is run for shelter. Loving him is to let the waves grind me into the sand. It does take everything in me to "keep returning to the water to be hit again with everything" he is and he isn't. For now, I have to let go of the pressure I put on myself to be a certain way. I have to embrace the small ways I love him and ways I am "keeping my heart oriented towards" him. I have named him. Is that not love? I am carrying him. That has to be love. I still smile when I feel him move - something I find almost miraculous for myself to do but it must mean I love him. This, without a doubt, is the hardest thing I have ever done.

an email, a name, and a verse

"Sully, I'm calling him Sully. It doesn't mean anything super spiritual - keen eyes - after I had called him that a couple of days a friend of mine wrote when she saw his picture that he had a beautiful face and eyes that looked like they were listening. And then it just seemed right - like his name. Sullivan Gage Anderson. Gage means to measure and he does feel like he is measuring everything we are or thought we were. I feel like I am being weighed and measured and examined - not just me but everything in my life - every thought and action - every reason for why I do the things I do and have done. But Sully is softer, more tender. Oh I am struggling so much. It helps me to call him by name, to let him be a real baby. My heart is trying to move on and distance myself. I feel myself pulling away from him, not wanting to love him. But I want to love him - I really do want to love him. Why am I struggling so much? This is so hard..."

Remember my affliction and my wanderings, the wormwood and the gall.
My soul continually remembers it and is bowed down within me.
But this I call to mind, and therefore I have hope:
The steadfast love of the Lord never ceases; his mercies never come to an end,
they are new every morning, great is your faithfulness.
"The Lord is my portion," says my soul, "therefore I will hope in him."
Lamentations 3:19-24

Waiting

I never know when they'll come, the tears. A friend bought me sushi for lunch today and I cried. When twinkle, twinkle little star played while Ella tried to hold her practice violin, I cried. I sat on the edge of my bed last night and put lotion on my feet and cried. I am being so functional, so matter of fact about life, but then the tears break through. And I am scared all over again and don't feel brave or strong or courageous at all. Every time I catch a reflection of my growing belly the first thought in my head is that my baby will die. I can't stand seeing myself. I try to think other things, I try to tell myself to be grateful for the time I have with him but I'm struggling to find a balance. Emotionally I see myself trying to move on but nothing has ended yet. I have to go to normal appointments, 24 weeks, 28, 32 and so on until - until when? I feel like I am just waiting for this to be over.

Close to the brokenhearted

I went to church on Sunday. I wanted to go but couldn't believe the guts it took for me to actually walk through the door. I don't know why. I love our church. Perhaps it is because it is such a normal part of our lives and everything normal does seem so unusual right now. I sat outside in my car and watched people walk in for probably 15 minutes. Finally, I walked in on the last song. As soon as I walked in I burst into tears. I couldn't sing, just cry. I'd like to say I paid very close attention to the sermon and left with some deep truth that will carry me through these days. But all I can say is that I was there and that it was good for me to sit in the back and cry.

I think about all the things I guilt myself into doing. About all my thoughts of what will bring me closer to God. I should pray more, read my bible more, be more this or that. These days are so different. I can't corral myself into any of that by the pressure to perform I normally use to function. I hear, "The Lord is close to the brokenhearted" and I know it to be true. I have done nothing and still he is near me. How little I have to do with his love. I am broken and cry every day, I get angry, I am distant and cold but I know with a certainty that must be a gift (because I keep questioning why in the world I would keep feeling it) that God is close to my broken heart.

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief - and unspeakable love.
Washington Irving

bird song

Yesterday was a nice day. Slow, the phone did not ring constantly only for me to feel guilty and then tell myself to not feel guilty for not answering it. I went to take pictures of a family I've photographed for a couple of years now. We don't know each other well. I only see them around their "picture" time so we don't know anything personal about each others lives. She asked about my pregnancy, when I was due and what I was having. I was surprised at how calm I was. How I answered the question with the simplest answer; "We are having a little boy and he is due in February." We exchanged commentaries on the third which she also now has and I was amazed that I could do it. That I could pretend that everything was just fine. That nothing at all was wrong. That we were just having a little boy in February. It was actually really nice.

I've found a time to walk. When I wake up before the world, before daylight is totally here, when the morning birds have just begun to sing, I put on my shoes and meander through my still sleeping neighborhood. I like the feeling of privacy, that neighbors don't see me as I walk past and that I don't have to politely smile and say hello to anyone. I like the sound of the birds. I like talking to God and to myself and to my little boy. I have a name I'm calling him and I like his name. I like saying it, calling him by name. I've never called my babies by name until after they were born - it seems so different to me but so necessary this time. I couldn't believe I said it or even authentically felt it this morning, but, I thanked God for this little boy. I know he is leaving a permanent impression on me that I'm persuaded to believe will change me for the better.

Breathing Space

A friend asked yesterday how many weeks I was now and I couldn't tell her. I really didn't know. Time stopped at 20 weeks with our ultrasound. Have I actually progressed further in being pregnant? I look to a calender: one week and five days since that ultrasound and the changing of our lives.

The surprise of not wanting to be alone was met by dear people who have just been here for me, been here to do the dishes with me, or sort through Ella's old clothes, paint a room with me for distraction, or provide us food for our bodies. But I sense a change and a need for some time and space without distraction. The thought of being alone doesn't terrify me as it did that first day after our discovery. And so, it is time for me to just breathe, to walk slowly, to live each day with my son intentionally. For today, I do not want distractions, just space...

My choice

I never thought I would be in a place to make a choice like this because I never, even in my worst nightmares, could have created this scenario in my head. Dealing with something like this was so far off my radar screen – no where even close to life possibilities in my head. I ask some women what they would do. Most say they don’t know because who does really know? I want someone to make the choice for me. But ultimately, I can ask trusted women, talk with Brad, be advised by counselors, but in the end, I am the one who must make this choice. I have to walk down this unfathomable road. People say I am not alone but in the end am I not alone? None of you can do this for me – none of you will make this choice for me.

To choose to say goodbye now would not end it all, there will be grief and tears and processing no matter when it happens. In the end, I know I must say goodbye. To let this little life play out is to ask a tremendous amount of trust from me and to let go of any control. To look down this road is terrifying. I let myself believe I’m debating this in my head but already I know we will walk this road. And it makes me ache. As much as I wish I could let go of this right now, I know I am not ready to let go of him yet. In a very strange way, he is a protector to me. I glimpse hardship and grief, but also, time for stillness, a reprieve from the world while he is with me. If I let him go, I will expect myself to get “back to normal”. But, really, will I ever be able to do that again? We had planned this to be our last child so why not let him be? What do I really have to rush back into? What is so important? All the things I have filled my life with, have any of them ever mattered? Perhaps this choice will be the truest choice I have ever made…

final results

Friday was our day for the official diagnostic word on our son. It came later last night. The quick results didn't reveal a third allele on the 18th chromosome. We didn't really know what to do with that information this past Friday. Did it mean there was hope? Could our son just have a few problems but hopefully correctable problems? Was it something else, something genetically between the two of us? I grew angry and then hopeful. Brad was still sad but yesterday came back up to some level of normalcy. And then the phone call...

The final results reveal without a doubt that it is trisomy 18. Apparently that chromosome can be tricky and not cooperate with the quicker test but on every cultured cell a third allele lit up - every single cell. It's in his entire body - every single last cell is fatally flawed. There is no point to meeting with cardiologists and surgeons because they can't fix every single cell.

We cried all over again and then held hands as we walked through the field next door. A light rain fell on us - how incredibly appropriate - seriously - are we on a movie set? But as I think about that now, it wasn't the pouring rain and devastation of last Tuesday. Devastating again, yes, but a misting rain that we were walking through. Even in it there was that little seed of hope but not that our little boy would be perfectly normal but that we would survive this. That maybe, we would find a name for him, and instead of looking at his life as a waste we would say that this is what his life cycle was always intended to be, that we could accept that and maybe, just maybe, actually enjoy the days we have with him(?). I thought, he's been here for his brother, Zane's, birthday and in just a week he'll be around for his sister's. And, then, I want him here for my 30th and Halloween - I should be sure to feed him lots of candy. Can he taste that or at least get really wound up inside me from it? And what about a Thanksgiving turkey - I can tell him how I've really liked ham better and give him both. Oh, and Christmas, will you be able to hear the carols of Christmas little boy? I want you to hear my favorite ones and hear your brother and sister's delight on that beautiful morning. And then I know you'll go. And somehow I can rest in that.

Cake in the afternoon

Monday, October first. What do I do with this day? Do I go back to my normal life, normal activity? I want to and then picture it in my head and decide I'm not ready. The quick results for my amnio left us with more questions so now we are waiting until Friday for "answers". It's strange how I'm not all that anxious for Friday to come. I had more anxiety about that first appointment, that first ultrasound. I hear myself saying, just expect the worst. You know what's coming so why even wait for it? But then there will be a glimmer of hope. Yesterday, after talking to a friend, I had it for the first time all week. Hope has never been that tangible to me before. Perhaps the absence of it made me recognize it when I felt it again. And, even while feeling it, holding it lightly, I knew it wasn't a guarantee that everything would be OK, but I was peaceful and calm for just a few hours before I started rationalizing myself out of it.

So, here I am - made it to the afternoon. I'm printing a syllabus for a course I had registered to take. I've decided to still take it but have let go of making myself answer if I will be able to complete it or not. I even ate a piece of leftover birthday cake as I sat down to print. I know that sounds strange but food has been less of a comfort than I would have expected it to be. I see why people bring food - when your heart is breaking that last thing you care about is eating - so it's put in front of you and you put some in your mouth and physically you are nourished despite the pain. So, to eat a piece of cake at 4 in the afternoon seemed like a part of Heidi before all of this. Or maybe it's just that tangible hope again...