Will Always Remember

It was about 2 years ago this time that I began to receive an ongoing series of reports  from our doctors of problems with the pregnancy.

At the end of 2011, Dec 31, our baby was diagnosed with Trisomy 18, Edward's Syndrome and we were faced with the awful option from our doctor to abort. We chose not to.
On Valentine's Day, Feb 14, 2012, I felt our baby move for the last time. A sonogram confirmed her death that night. I was just of few days shy of being 6 months pregnant.
Two weeks later, I returned to the hospital to deliver our dead baby. My husband stayed at home to care for our 2-year-old son that night and I slept alone in my hospital room.
The next day, on the way home from the hospital, we stopped at the municipal funeral home to fill out the papers for her cremation. I sat in the funeral director's office in my pink cardigan and pink shawl sort of numb to it all.

I think about our baby, Rebecca Grace, often, almost every day. We scattered her ashes on the hills behind our house where the communication towers stand. I can see them from our bedroom window. I chose that place to help me remember. I don´t want to remember all the pain in the grief....but I do want to remember her. I especially think of her when others ask how many children we have and I answer "one." Sometimes they say, "Maybe you'll have a daughter next." If they only knew....

Today, I ran across a blog entry that reminded me of this experience and of my precious daughter. It was written by Nancy Guthrie, an author who has lost not one but two children to Zellweger Syndrome. It was just some thoughts about Halloween and how it stirred up thoughts of the burial of her daughter. It also is a reminder of the truth that those who "sleep" in the dust will one day awake.

The link to the blog entry is here. I wanted to make a note of it so I can come back to it again at a later date.

Control

Okay, so, it´s been 12 days since I last wrote. Is this a sign of things to come? I hope not. I hope I can be consistent in writing about my experience as I process the loss of our daughter. I´ve been busy the last few days though. Doing what? I don´t know, really.

Starting to think about our return to Sant Vicenç. We´ve been renting an apartment closer to Barcelona the last 2 years....but we had made a decision when we moved here that if our apartment in Sant Vicenç doesn´t sell after 2 years, we´ll move back. Of course, in light of the economy, especially the real estate world, noone even looked at it while it was on the market. We had know idea of all that we would pass through during our time in our temporary home.

The truth is that this move comes at a good time for me. It´s a distraction from wallowing in depression. It´s a new project. When we first moved there, we just stuffed all of our belongings (mostly mine) into that little apartment. It was crowded and a bit hodge podge. We´d like to try to organize, throw out, update and decorate to create a welcoming, homey environment. Neither of us is very talented at decorating, though, so we´ll see how this goes.

It is a small apartment, though, so I´m starting to think more about how to reduce and how to better organize the things we do have before we buy other things. Whether it´s effectively folding clothes, boxing cleaning products, discovering unused space, it´s definitely keeping me busy. It´s also giving me some semblance of control (possilby a false sense of control) in my what could be out of control circumstances. This could be good--I´m starting to notice things I never saw before...wrinkled clothes, disorderly cabinets....but it could also be bad--returning to the inaccurate idea that I have any control over circumstances

In reality, it is God who is control. Good thing! So, I´m trying to become a wise steward of the space and the possesions God has given us without obsessing over it all.

I have a renewed level of energy after such a difficult pregnancy, but I´m still super-tired at the end of the days. Is it that I´m tired or that I´m depressed and supressing it? Don´t know. All I know is that I fall asleep when I put Aaron to bed at 8:30-9pm.

In other "news," I´ve started reading a book that I ordered a few weeks ago. It´s called Holding On To Hope by Nancy Guthrie. She lost 2 children in two separate pregnancies to the same rare disease, Zellweger Syndrome. The book is a reflection on issues of grief: loss, tears, worship, gratitude, blame, suffering, despair, why?, eternity, comforters, mystery, sumission and intimacy, using the story of Job as a backdrop for her reflections. The book includes an 8-week Bible study on the book of Job. Her book is just a 102 pages, in addition to Scripture references and the Bible study in the back. I´m more than halfway through. It´s good so far. She definitely can speak with authority on these topics. It´s a very logical book, focusing on truth, not so much on feelings. It helps to put the feelings that come (when they come) into perspective.



I´m still feeling pretty numb, like everything was a dream. Did that really happen? But I suppose this is normal. I´m hoping to feel something again soon.

Spring is about to be sprung here where I live. The sun shines a bit brighter in Spain these days. The days last a little longer. That has to bring a little added joy to these days, right? I hope so.

Dialogues

Just jumping around tonight on different topics related to Trisomy 18 and somehow found this song by Chris Rice, "Baby Take Your Bow," which probably had nothing to do with Trisomy 18 when it was written...but it sounds like a sweet song of release of a child who has gone home to heaven early. 

I´d like to develop more conversation, more dialogues, WITH Rebeca (although she´s no longer here.) I think it would help me process more. I feel like I did know her more than anyone else because of her movement while in the womb....but I didn´t get to know her for very long, so relationship with her and relating to her takes more work.  

This song helps me to think more about who she was and who she might have become. It aids my ongoing desire to celebrate her and my my eventual need to release her to Jesus´ almighty care. It facilitates my communication toward her. I´m not ready to let her go yet. I feel like I haven´t even grabbed hold of her yet....but I´ll get there one day.

"Baby Take Your Bow" by Chris Rice

We´re gonna miss your song and dance,

The way you made us laugh;

And we´re so glad we had the pleasure for a while,

But on the other side, you´ll find a better audience.

Just be yourself and you can´t help but make the angels smile.

Baby all the world´s a stage.

Playwright pens your final page

And then He brings your curtain down.

So blow us your kisses and drench our eyes.

We´ll rise to our feet to wave goodbye for now.

So baby take your bow.

The world is lovelier because you had your moment here

And we could see a friend of heaven in your face

And in your song we heard the longing for a distant shore.

Now your time has come to go

And so be on your way.

Baby, all the world´s a stage.

Playwright pens your final page

And then He brings your curtain down.

So blow us your kisses and drench our eyes.

We´ll rise to our feet to wave goodby for now.

So baby take your bow.

Your show is over now.

It´s time to lay your burdens down.

So baby take your bow.

Another gift that had a great impact on me was a letter to her mother written from the point of view of baby who has passed away, a message of love from baby to mommy. This was sent to me by another mother here in Spain who lost her son to Trisomy 18 just after he was born. This Trisomy 18 mommy sent the message to me 2 days after I found out that Rebeca Grace had died. (I have included my English translation here with the original Spanish version below.)

Who knows what the real Rebeca might have said to me...but I can take this as a model and imagine her little heart and all the freedom she must be experiencing now. I receive it as an encouragement and a reminder that she was a real person and that I will meet her again one day, face-to-face.

Mommy, 

I´m writing to tell you that I am fine. I am complete. I took off the costume of a body that I wore and now I am light, like a little sun. I don´t need a body to feel you. I see from my heart. Words are not necessary. Now I see the immense love that there is in you and in all beings. I am outside of time. I don´t measure whether my time with you was short or long. For me it was just precious. My stroll through life was just as it should have been. I came to learn and to teach others.

And you, Mommy, what have you learned after all of this? When I left, everything seemed dark to you, but I made sure that my love would be the light that illumines your heart for always. Now you are going to begin to see tht you are very strong. You still have so much to give during your lifetime. There are souls that love you and need you. You are full of love to give. 

The best gift you can give me is to not hide and waste your life, crying, lamenting over why I am not there. I don´t want to come back. I am full of peace. I don´t need you to dress yourself in darkness nor to walk around in sadness. If you are, it´s only because you are thinking about your sadness or your pain; but beyond, where I am, there is only happiness and love. 

Each morning I want you to think, "The world needs me. I´m going to give testimony TODAY of the love I feel for my daughter. I will be brave and I will try to move forward, sharing all the light that I can."

Your life has great meaning. I know that your great pain will slowly, slowly be transformed into a true miracle. The caterpillar wasn´t born to be a caterpillar nor to grieve its great pain, hidden in its cocoon. The caterpillar gives itself up to love. And the GOD who is love ensures that this creature that dragged itself heavy and upside down will soon fly freely and discover the beauty of life. 

I know that not a day will pass when you don´t miss me. I know that you will think of me again and again. I know that these dates each year will be difficult....but I love you! LIVE! Breathe, feel, converse, give love, laugh, become a little girl again! I hope that my departure doesn´t fill your life and transform you into a shadow of what you once were when we were together. You are in the world. You have a mission to complete. Never forget that you are unique and irreplaceable.

Mamá:

Te escribo para decirte que estoy bien, plena. Me saqué el disfraz de persona. Ahora soy luz, como un pequeño solcito. No necesito cuerpo para sentirte. Veo desde mi corazón. Ya no me hacen falta la palabras. Ahora veo el inmeno amor que hay en tí y en todos los seres. Estoy fuera del tiempo. No mido si mi tiempo contigo fue corto o largo. Para mí fue precioso. Mi paso por la vida fue tal como debió ser. Vine a aprender y a hacer aprender a los demás.

Y tú, Mamá ¿qué has aprendido después de todo esto? Cuando me fui, todo te pareció oscuro, pero yo me encargué que mi amor fuera la luz que iluminara tu corazón para siempre. Ahora vas a comenzar a ver que eres muy fuerte. Pues, tienes mucho que aportar allá en tu vida. Hay almoas que te aman y te necesitan. Tú estás llena de amor para dar.

El mejor regalo para mí es que no te escondas y "desperdicies" tu vida, llorando, lamentándote porque no estoy. Yo no quiero volver. Estoy llena de paz. Yo no necesito que te vistas de oscuro ni que andes triste. Si lo estás, es que sólo piensas en tu pena o en tu dolor. Pues, allí donde estoy solo existe alegría y amor. Cada mañana piensa: "El mundo me necesita. Voy a dar testimonio HOY del amor que siento por mi hija. Seré valiente y trataré de seguir adelante dando toda la luz que pueda."

Tu vida tiene un sentido. Tu dolor enorme sé que se va a transformar lentamente en un verdadero milagro. La oruga no nació para ser oruga y quedarse llorando el dolor, escondido en un capullo. La oruga se entrega al amor de cuerpo y alma; y ese DIOS que es todo amor hace que ese ser que se arrastraba pesado y cabizbajo pueda volar liviano y descubrir la belleza de la vida. Sé qu eno existiría un día en que yo no te haga falta, que me recordarás a cada rato, que las fechas te van a costar. Pero yo te quiero. VIVA. ¡Respira, siente, conversa, entrega amor, ríete, vuelve a ser niña! Que mi partida no te llene la vida y te transformes en una sombre de lo que fuiste cuando estábamos juntas. Tú estás en el mundo. Tienes una misión que cumplir. Nunca lo olvides que eres única y irrepetible.

It´s About That Time

So, my medical leave has come to an end. It´s been 18 days since I delivered our little girl.

Delivering a baby, by the way, in Spanish, is called "giving light" or "giving the light." Not quite sure why it´s called that. (Might be an interesting thing to research.) I wonder if they still use that phrase when the baby is stillborn. When we were making plans to go to the hospital after the baby died, the doctors used the word "expulse."

I´ve been up and down, busy with Aaron, trying to feel, to process this strange nightmare-like/dream-like experience, and mostly just walking around with a negative-ness clinging as a backdrop. I am starting to return this week to some of the normal activities of my life. It is a good thing. I think if it weren´t a necessity, I might continue to stay isolated for weeks or months to come.

Last night I returned to the new-found practice that I started in January, inspired by Ann Voskamp, of writing down blessings, things I´m thankful for. I realized that in the wake of Rebeca´s departure, drained of energy and motivation, I stopped. Time stopped. While the pause is understandable, I think it´s healthy and even important to look for gifts at all times, but especially in times like these, times of trauma, times of being lost.

So, I resume....

*the plastic cover on Aaron´s stroller on a cold, windy day
*lentil vinagrette salad
*red tulips from Ruben, delivered by Aaron
*mashed potatoes with cheddar cheese on top
*laughing with Aaron at the "burping ostrich"
*blooming rosemary
*sunset at Tibidabo
*cuddling for story time

Looking, searching, watching....while I´m still lacking motivation to do great, deep Biblical studies at this time, I can still hunt for His blessings in my surroundings, in my day-to-day.

Last night I cried myself to sleep, hugging a little pink blanket that was given to us for Rebeca. I think tonight I will do the same. Where is the end of this road of grief? Where is the light at the end of this deep, heavy tunnel of lostness? Its beginning is now, just starting, with many steps to go, maybe the rest of my life. Its end? I don´t know.....but I choose to walk through this darkness, grasping for His hand, searching for His face.

Heavenly Father, who too lost a child, Your precious and only Son, I draw near to You, knowing that You understand, You care and You carry me. Thank You for being close to me. Amen.

Living With Trisomy 18

March is Trisomy 18 Awareness Month. Before I got pregnant with Rebeca, I had never heard of Trisomy 18. Since she did not survive, it looks like we won´t live with Trisomy 18 on a day-to-day, lifelong basis.

While Rebeca didn´t survive to birth, there ARE children who not only survive, but continue to live on long past the expected time marked out by the doctors. The following is one such story, a story about Kayden who is 10-years-old now, and his mother, who is working to carve out a new space for Kayden and other disabled children to play in Baxter County, Arkansas.

Sharing the Mix

How am I doing? I´m hanging in there. I´m feeling a mix of emotions and experiences. Mostly I think I´m just walking through the days right now with not a lot of time to reflect and feel, although it seeps out in the most surprising moments.

I definitely feel so cared for: I´ve received cards, flowers, emails, Facebook messages, phone calls, home-cooked meals, personal visits. Thanks for checking in with us to see how we´re doing.

I haven´t written in my blog for about 7 days now. I just don´t know where to start, don´t know exactly what to share. I actually have a number of different experiences from the last 10 days scribbled out on to the backs of shopping receipts found in my wallet so that I might share them at a later date, if nothing else, so as not to forget them in the future. However, right now, demotivation is starting to hit. There´s a part of me that is grieving...and I need to grieve; but I don´t seem to have a lot of time to do it...and I´m also trying to find the balance so as not to fall into self-pity and the woe-is-me trap.

It´s a strange feeling. I get sad....and want to be sad for a while....then I remember all the things I remembered as we waited for Rebeca´s going-home day to arrive....all the truth that she is now well, that I will see her again one day, that the Lord is taking care of her. I also continue to think of all the moms around the world that have had to watch their children die from hunger, from war situations, from illnesses, etc. It´s hard to feel too sorry for myself then.

Yesterday I was quite sad (and still in a bit of physical pain). I told Ruben that my mind understands why Rebeca Grace did not survive. Trisomy 18 totally messed up her development and her body just wasn´t able to sustain her....but my heart, my heart does not understand. I really wish I could hold her, could know her more. *Sigh* These desires will have to wait for heaven....and it´s the delay, the missing,that makes me sad, as well as the suffering that she might have experienced....but she was just arriving at the "age" or gestation of beginning to feel pain (26 weeks). Maybe that´s why she didn´t live longer. Who knows?

At any rate, I want to try to find the balance of remembering and celebrating her and living differently because of her and not waivering to the one side of depression nor to the other side of just forgetting and moving on as if nothing happened. It´s sort of a weird situation.

Yesterday, I was also quite angry for no apparent reason. Poor Ruben. Pray that I would not take anything else out on him. It was just a moment....but I was angry at him for nothing that he did. I also raised my voice with Aaron when he threw his food on the floor. He started crying because I yelled at him and I started crying because I yelled at him and because my heart hurts and is just not sure how to feel.

I´ve been granted a short leave-of-absence for medical reasons (just time enough to heal up physcially). During this time, the state pays your income. Of course, since it´s just 10-day leave I don´t know how much it will help to have the state pay me :-) and since I´m mostly at home anyway, my life hasn´t changed much with medical leave or no medical leave. I will need to get back to my normal routine, although there is not a great desire to get back to normal life just yet.

During these days, I have been able to spend time with Ruben and Aaron. I´ve also been able to do a bit of reading.

In the last month I´ve received a couple of books: Silent Grief by Clara Hinton and  A Shelter in the Time of Storm, Meditations on God and trouble by Paul David Tripp.

In addition, I just received a link from a friend about a lady named Nancy Guthrie who lost TWO of her children to a rare disease, each one died after living for about 6 months. Below is a video of a 1 1/2 hour interview with Guthrie on Suffering, Hope and the Centrality of Christ with Nancy Guthrie from John Piper´s website, Desiring God.


I´ve been listening to the interview as I´ve been writing. I´ve been able to relate to a lot of what she says.  It´s been encouraging and confirming. Around the 30-minute mark, she makes a statement about faith that has really encouraged me regarding how we´ve been facing our journey with Rebeca:

"Faith is not always defined by the ability to work up fervor to believe God to do a miracle; but that faith is trusting God to do what is right....I think real faith is submitting to what God wants."

She also mentions how sorrow and joy can co-exist. She also mentions the reality that faith does not take away pain. She also talks about grief and how dealing with it has adapted over the years.

Based on the things I´ve read and heard about child loss and grieving, there  are some dark days yet ahead. Deep grief often takes 6 months to a year to set in. Nice.

We still need to collect Rebeca´s ashes from the funeral home and decide what to do with them. She was delivered on a Friday. We made the arrangements at the funeral home on the way home from hospital on Saturday. The director mentioned that her ashes would be ready to collect on the following Tuesday afternoon. He also mentioned that we would have 90 days to collect them. I thought, "We don´t need 90 days. We´ll be here on Tuesday afternoon."

Tuesday at 7:30pm was the day that I had to run to the emergency room in search of a prescription for antibiotics for the urinary tract infection that I thought I had (which, in the end, I did not have.) I waited for 4 hours to see the doctor. While I waited, I read 3/4 of the book Silent Grief. It was helpful to prepare for the reality that maybe noone will be able to care quite as deeply as Ruben and I will in this situation because they might be limited in their ability to understand.

Then, around 11:30pm I was hit with the reality that I FORGOT about Rebeca´s ashes. I was so sad! When I crawled into bed around 2:30am, Ruben woke up and I told him, "We forgot..." He actually didn´t forget, but in the midst of the busyness, he decided that we could wait. Even her father remembered. How could I have forgotten her? Her mommy? The only remains of her? So, the reality of the 90 days is definitely necessary, definitely needed. We haven´t scheduled a day to pick up the ashes yet, let alone plan out any kind of memorial or celebration of life, but we will. Once we get to that day I´ll let you know.

Aaron´s waking up so I´ll stop for now. Feel free to keep checking in. If I don´t answer the phone right now, don´t worry. I´m not suicidal. I just don´t feel like talking right now. Thanks for keeping up with the process. I appreciate you.

Not Sure What To Do

I was aching yesterday and fearing that it was a urinary tract infection (I had one last June that was horrible!) I ran to the emergency room last night to check and get antibiotics if necessary to nip it in the bud. I waited 4 hours to be seen by a doctor.

Finally at midnight they called my name. They tested the urine and it came back clean. The doctor said that because of the delivery I´d had just a few days ago, she wanted the gynocologist to look at me. So, I waited another hour. The gynocologist could not find anything wrong. They took a blood sample and that came back fine, only indicating possible inflammation, which is normal after a delivery.

I finally got home around 2:30 am. Ruben had left me a salad so I ate that before going to bed around 3am.

So, today I feel bad physically, the worst I´ve felt since going in to deliver Rebeca Grace. Ruben has to go to work this afternoon and won´t be back ´til tonight. I´m not sure how I´m going to take care of Aaron today. We´ll see what happens.