We met with hospice this morning. It turned out not to be as daunting as it sounds. I did hate walking through those doors with the word HOSPICE emblazoned thereon. “WHAT IN THE HELL ARE WE DOING HERE???????” I internally screamed behind my expressionless facade, “WE’RE NOT SUPPOSED TO BE HERE!!!” We should be picking out nursery decor, and getting all the cute little girl clothes out of storage. This? This. This just wasn’t fair. But in we went anyway. The women we met with were wonderful and made it clear that it was Nora’s LIFE that they were focusing on, not her death. Their purpose is to make life a little easier on us for the time, for which we are so hopeful, that we DO get to spend with Nora. It was by no means a meeting with the Grim Reaper! We, of course, want to focus on the positive and on what we’d like to see happen in “best case scenario” – but we’ve known all along that our plan isn’t always God’s plan. It would be nice not to have to use our plans for “worst case scenario” at all – but if we need them, they’re there. With some assistance from these beautiful people we’ll figure out exactly what those plans are, and put them up on a shelf for that rainy day, if and when it comes.

My sister, Sarah made this for me!

Today, I’m thankful for the gift of time. I think that if one day in the past I’d been given a glimpse of myself walking into a hospice facility, my hands cradled around my big belly, I would have been crushed with anguish from that day onward. God only gives us a day at a time, the future is none of our business until it becomes the present. It’s comforting to know that even back in those tranquil, sunny days — God was already here ready to meet us, his arms outstretched offering to take this heavy load from us.

We spent a bit of the afternoon enjoying a day on loan from Spring. Greta and I decorated the driveway with sidewalk driveway chalk and swung on the backyard swings. I sat back and relaxed, watching as Greta rode her bike around the driveway and danced with her shadow. It was a typical day of “superficial ordinary”, where everything seems normal on the outside. Some days this is wonderful. I enjoy being able to blend in and have some sense of “regular” (really, what ever that even is?). There are moments that slip by that I’m able to forget the sadness I carry around inside of me. I’m able to smile and laugh just like I used to.

Then there are other days that “superficial ordinary” doesn’t come so easy. The effort feels forced and unnatural. I’d rather be in my bed wallowing in my familiar state of malaise. I’m not in the impossible depths of despair nor am I at the peak of mental prosperity. These are the many days that I simply “manage”. Were I to get out or off of my bed, I may as well be walking in circles. Not for the lack of things to do! I just feel like I don’t know what to do with myself. I don’t know what to do but wait. I refuse to dwell on the uncertain future and can’t plan for it either. It’s such a strange surreal place to be. But through it all, I’m surrounded by the sweetest little family that ever was. 

It would be impossible to go to bed feeling sad and lost after discovering a note on my pillow that says, “I love you” along with one of her “bees”. Thank you, God for sweet Greta.

As I was clipping coupons yesterday morning, I noticed with a subtle sense of foreboding that some of them expired in May. May… How  time could have the audacity to exist past April seemed so insensitive. I remember wanting to get through the next four months as quickly as possible. Now that they’re half way over, I feel like they’re slipping away faster than I can comprehend.

The plan is that Nora will arrive in April, just around the corner. While I remain focused on God, I am able to remain relatively at peace with this proposed occurence of uncertainty. I recognize and trust fully in the knowledge that God has a plan for Nora, a plan for me, a plan for our family. The human aspect of my being is simply afraid. I’m obviously afraid of losing Nora, but truth be told, I’m also afraid that she will live. I’m afraid of all of the challenges she will face. The challenges that I, as her primary care taker, will ultimately be responsible for. It’s not that I am not up for the challenge or not willing to go the extra hundreds of miles. I’m fearful of my inexperience. I am a quirky artist with a frenzied temper, easily distracted and completely illiterate in the medical field. I know how to administer Children’s Tylenol and put on a Band-Aid – that’s about it. (Administering Delysum is up for debate as is noted in a recent telephone call to the Poison Control Center). Of course Rick Santorum’s daughter is almost 4 years old, having overcome all of her obstacles associated with T18. I’d have to assume this is largely in part because Karen Santorum is/was a NICU nurse. Throughout Bella’s life her mother has known exactly who, what, where, when, why and how. Me? Not so much. My lack of knowledge and experience should be a great cause for concern! But maybe in the way that God prepared Karen Santorum, he has also prepared me. I just don’t realize it as it’s not so obvious.

These are merely fruitless worries and not full blown episodes of anxiety, thank God. I continue to trust that God will equip us with the tools to make it through each day just as he has done every day since the 9th of January. At the end of the day, I’m still human, still susceptible to intermittent bouts of misgivings, yet still human to make the conscious decision not to let them consume me.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
– Matthew 6:34

And my God will meet all your needs according to his glorious riches in Christ Jesus.
– Philippians 4:19

Dearest Nora,

As I write to you I’m resting in my bed reveling in your spritely flutters and wiggles. I think of your sweetest little cheeks, your tiny button nose and your beautiful little eyes. Those beautiful little eyes that I dream will one day soon look up at your Mommy and Daddy expecting nothing but love. We have an over abundance of love for you, sweet Nora, if only that were enough.

Just incase you decide you can’t stay too long with us, I want to tell you about your family.

This picture was taken just before Christmas shortly before we received your diagnosis.

I’ll start first with your Daddy. Your Daddy is simply the sweetest, kindest, funniest, most loving man I have ever met. When I’m not busy taking him for granted (which fortunately isn’t all that often!!), I marvel at how lucky I am to be his wife. His faith, his devotion to his family, his strength, his compassion toward his loved ones, friends, even complete strangers is awe-inspiring. I wish that every girl could be as lucky as I am. “To know him is to love him,” should be his slogan. Some of my favorite moments are listening to him play with your older brother and sister. I love how he makes them laugh and his unique way of making them feel special and loved. He can cheer me out of the worst mood and can make me laugh till I feel like I can’t breathe! I love that he loves to make me laugh. Every morning before he leaves for work he pulls the covers off of me so he can kiss my belly, lovingly stroke you and wish you a good morning. Oh, how he loves you!!

You have a birth sister who doesn’t live here with us and didn’t grow up with us, but she is no less loved, no less important. She started her tiny little life right where you are right now. You share a middle name with her – both my beautiful “Roses”. She was one of the very first people to know about you, and she was so excited to hear the news! I hope you will get to meet her and you can see  for yourself what a beautiful person she is inside and out.

Your brother Gavin is such a funny and sensitive little boy, just like your Daddy. He loves to play sports, he loves to draw and he loves to make people laugh. He is very curious about you and often puts his ear up against my belly to see if he can hear you. He likes to feel you moving around in there and gets a big smile on his face when you kick. I love that when we’re here by ourselves at home he still calls Daddy “Dada” and me “Mama”. He’s so full of love, and can’t wait to meet you! He’s everybody’s buddy!

Your sister Greta is a sweet cuddle bug. She is the most compassionate, empathetic little person I have ever met. If she finds me in bed when ordinarily I’m not, she comes in real close to check my eyes for tears and to see if there is any way she can “make it all better”. Often she’ll lend me one of her “bees” (security blankets) as she knows those always makes her feel better! She talks about you lots and is always drawing pictures for and of you. There are lots of angels in the pictures she draws — even angel kitty cats, her favorite, favorite animal. Greta couldn’t wait for a little sister and just KNEW you were “her”, long before we found out for sure. She gives you hugs several times a day and tells you she’ll miss you, even if she’s just going into dance class for a little while. When we’re cuddling sometimes she can feel your little nudges up against her back and she gets so excited! Today she asked me how to spell “Nora”. I later noticed the red magic marker on her hand. She had drawn a collection of hearts with your name next to them. She makes me smile with all of her sweetness. You will love your big sister, just you wait!

Beside your immediate family you have a treasured extended family that loves you intensely. They were all so surprised and excited to hear the news back in August that there would be another little one in the family. These are among the most tender, compassionate, beloved, determined and courageous people you could ever hope to meet. No matter what, we are always there for each other, picking each other up in times of despair, and we always come out on the other side stronger than who we started out as. You come from a long line of strong fighters, my love! Simply by having made it this far, you definitely have inherited that strength.

There are also a countless array of friends who love you and who are praying for you. All of these friends and family that help Mommy and Daddy get through these exhausting days, we don’t know what we would do without them. Even those who aren’t able to be physically present, rest assured, we feel the prayers and the love they send our way, and we hope you do too.

No matter how long or how short your stay is with us, I can promise you that you will spend a lifetime that some people can only wish and hope for… surrounded by those who love you the most.

I guess I should tell you about me too. I’m your Mommy. I too, love to make people laugh. I think that as long as you have a sense of humor, you can get through just about anything. I’m so thankful for the strength and peace that God has bestowed upon me to get me through this time. I’m also thankful that I still have the ability to laugh despite the uncertain road ahead of us. I feel blessed to be your Mama and I’m excited to meet you. I promise to keep you safe and loved in the mean time, and I hope you got all the candy heart messages I’ve been sending you through your umbilical cord, CUTIE PIE.  I love you, Nora Rose!!

Love,
Mommy

After a sudden and absurd onset of completely unnecessary road rage that was directed at me Thursday afternoon, I realized how important it is to remain on guard against Satan’s endeavor to rob us blind when we least expect it. The incident left me feeling angry, defeated, judgmental against mankind, and sorry for myself – after a beautiful Bible study session, no less. I sat there in my kitchen crying at my reflection in the window, wondering how someone could be so cruel to me when I am in such a fragile state. I wondered why I was in this “stupid situation” to begin with, which has me so on edge and so overly-sensitive. “If they only knew…,” I thought. I tried asking God for help, but I think He was just waiting for me to get proper perspective on it before He instantly dried my tears.  It was exactly then that I got a text message from one of my sweet Bible study friends, simply asking me when my due date was. Funny, I had just thought of her, and how I’d like to talk to her, and there she was texting me. After answering her question, I texted back that I really needed prayer right now and went on to explain the situation. I ended up on the phone with her as she prayed over me and calmed me down. God definitely used her yesterday afternoon to minister to me. Later that evening she sent a text to check on me that read, “I was thinking that satan really wanted to do a number on you through that guy and distract you from this morning’s message – call it for what it is and claim victory over satan’s attempt to bring you down and feel discouraged!! There is a huge spiritual warfare going on right now.”  After she pointed this out to me, it was so blatantly obvious that I can’t believe I didn’t recognize it!!

“Some people are like seed along the path where the word is sown. As soon as they hear it, Satan comes and takes away the word that was sown in them.” – Mark 4:15 NIV

It wasn’t even a covert breeze that came along, blustering away everything I KNEW to be true. It was a brazen and malevolent heist of joy that had just been sown in me at Bible study. I can recognize it for what it is in hindsight, but how better off I’d have been to have known it in the moment. I definitely would not have responded  back with the same hatred that I was being impaled with.

“Others, like seed sown on good soil, hear the word, accept it, and produce a crop—some thirty, some sixty, some a hundred times what was sown.” – Mark 4:20 NIV

So maybe the quality of my soil isn’t quite everything I thought it was, especially right now.  All the more reason to take special care and to be on guard in these fragile times. Satan has no sympathy for anyone!

“His children are far from safety,
crushed in court without a defender. The hungry consume his harvest,
taking it even from among thorns,
and the thirsty pant after his wealth. For hardship does not spring from the soil,
nor does trouble sprout from the ground. Yet man is born to trouble
as surely as sparks fly upward. “But if I were you, I would appeal to God;
I would lay my cause before him. He performs wonders that cannot be fathomed,
miracles that cannot be counted. He provides rain for the earth;
he sends water on the countryside. The lowly he sets on high,
and those who mourn are lifted to safety. He thwarts the plans of the crafty,
so that their hands achieve no success. He catches the wise in their craftiness,
and the schemes of the wily are swept away. Darkness comes upon them in the daytime;
at noon they grope as in the night. He saves the needy from the sword in their mouth;
he saves them from the clutches of the powerful. So the poor have hope,
and injustice shuts its mouth. “Blessed is the one whom God corrects;
so do not despise the discipline of the Almighty.” – Job 5:4-17 NIV

We had a doctor appointment Monday that left me feeling optimistic. Dr. S. insisted that he didn’t want to build up false hope, but yes, Nora is measuring right on target.  But for her heart condition (tetralogy of Fallot w/ VSD), and the official diagnosis of T18, she appears otherwise healthy. He did also mention that in his 20 years of practice, he has only delivered five or six T18 babies to term. Honestly, he doesn’t have a ton of experience with them. This is so rare and when it does happen, most people elect to end the pregnancy. I am ever so thankful for his optimism and also his honesty. I would much rather be given some sort of HOPE than have Nora written off as a lost cause.

I am so grateful for the optimism, yet my own emotions are experiencing a great divergence from day to day. I continue with all of my best efforts to stay focused on the present, and to allow God to take control of this, but there are days when the fear and doubt come slithering in.  There are the days that I have completely accepted that Nora is exactly who God made her to be, and then the days that I mourn the loss of who I thought she was going to be. Some days I imagine what it would be like to bring her home, others I’m tormented by the likelihood of planning for an infant’s funeral. I can’t think of a time in my life where I’ve felt such a loss of control. Yes, it is frightening, but ultimately it is where I need to be in order to let God take over.

I am the blind folded passenger in a car and have no idea where we are going. If I were driving, surely we would crash as I can’t see a thing. If I didn’t know and trust God as I do, I would be terrified and plotting my escape. Instead, I imagine God is sitting right next to me, a gentle smile on His lips, one hand on the wheel, humming to a song on the radio. He’s certainly not worried or anxious because He knows where He’s taking me. He is so excited to take the blind fold off when we get there. In the mean time, I still have my sense of hearing. I can enjoy the song on the radio. I still have my sense of smell and touch. I can breathe in the crisp breeze that blows on my face through the open windows.  I can sit back and relax as God leans over to tell me with His unerring wisdom, “I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11 NIV) With my hands clasped firmly around my round belly, I can’t help but smile at this news from beneath my blind fold.

We had the 4D ultrasound done today at Stork Vision in Crescent Springs, KY! What an amazing experience that was to see Nora’s precious little face, her sweet cheeks, and her little hands and feet! I had a continuous steady stream of tears collecting into my hair as we all gazed up at her on the monitor. She is absolutely perfect and beautiful in every way! She even smiled at us!

Any bit of awkwardness that I maybe had worried about was eliminated the moment we walked in the door. I was so encouraged by the sweetness and compassion of everyone working there. To hear that we’ve been in their prayers since the day I called to make the appointment completely touched my heart! 

I’m so thankful for all of the images and for the video of my sweet little princess.  These pictures of her while she’s safe, warm, happy (even smiling!), content and loved are absolute treasures. We also got a teddy bear with a recording of Nora’s heartbeat. Greta picked out a soft pink bear for her little sister.  I’m so so glad we decided to do this!! I’m very happy today!

PART I

Miracle [mir-uh-kuhl] – noun
1.  an effect or extraordinary event in the physical world that surpasses all known human or natural powers and is ascribed to a supernatural cause.
2.  such an effect or event manifesting or considered as a work of God.
3. a wonder; marvel.

Nora is a miracle, as is all life, in that she is a work of God. It is also a miracle that she’s come this far. Through all of the critical stages of pregnancy, she’s managed to persevere with a stubbornness that can only be attributed to her mother! I read today that 50% of miscarriages are due to chromosomal abnormalities. With so many things potentially in error with Nora’s genetic make up, there is also an abundance of efficiency present to have enabled her to have made it this far to 30 weeks! That is a miracle.

I’ve played out all sorts of fantasies in my head — an out of town area code shows up on the caller I.D. and “Maybe it’s the lab calling to clear up a terrible error that was made with the amnio results!!”, “Maybe the vials were mixed up!”, “Maybe the person reading the results was new and inexperienced!”, etc., etc.  The amnio results are said to be 99% accurate. It’s not so much that 1% shred of hope, or a possible error that I’m hanging onto, but rather God’s infinite power. Our God that created an entire universe has the power to cure a tiny baby with an extra chromosome.

I won’t sit here and pretend that I have God, faith, and religion all figured out. I don’t think there is anyone on this earth who could ever fully grasp the vastness of it all. Ultimately God wants a relationship with us, and what ever vehicle gets us there is all that matters. Arguing about religion is almost as silly as arguing about Ford vs. Chevy. One can point fingers and admonish the other driver for his lack of discernment. They can argue about the superior horsepower of one over the other, plaster “Piss on __________ ” stickers all over the back of their trucks, all in attempt to one up the other. But does it REALLY make a difference? At the end of the day, both trucks have 4 wheels, an engine, the ability to get people from point A to point B, and sometimes out of messy situations. In my opinion there is no “right” or “wrong” way. So it is with our faith.

In the words of Paul, “For Christ sent me to preach the gospel — not with human wisdom, lest the cross of Christ be emptied of its power.” – 1 Corinthians 1:17

The disunity amongst us empties the power of the cross. That’s what it says in the Bible and that is what I believe to be true.

PART II

Shortly after Nora’s diagnosis, my Mom was going through old letters and correspondences that belonged to her mother, my Grandmother. Among them was a letter about my grandmother’s first cousin Fr. Joseph Cappel. He was a Maryknoll priest that served as a missionary in Curepto, Chile from 1943 until his death in 2004 at age 95. By all accounts, he was a humble and incredible man, ministering to the poor and needy in his community by bicycle almost up until the day he died. There were 3 funeral masses said on his behalf just to accommodate his mourners. Recently, for reasons I’m not quite sure, his body was exhumed to be buried in a different location. It was then that it was noted that his body was still perfectly preserved! Many in his community are regarding this as a miracle and are seeking to have him canonized into sainthood — to have him officially recognized by the Vatican as a saint. Part of the canonization process involves documented miracles, as defined by the first definition above. Without any further thought on the matter, we immediately began praying for Fr. Joseph Cappel to intercede on our behalf and on behalf of this little baby! A  specific prayer was written out in the letter to put forward when praying for a miracle:

Father God, Holy, Good and Merciful,

We give thanks to you for Your Son, Jesus, our brother, who had pity on so many needy, when He was one like us.

To Him, Father Joseph Cappel F., Missioner of Maryknoll, consecrated his whole life, which he gave completely to Your favored ones, the sick, the poor, the sorrowful and the abandoned.

Lord Jesus, come now to our aid. We implore you that, by the intercession of Fr. Joseph Cappel of Curepto, You grant us what we request, Virgin Mary, Mother and Lady of the Rosary and of Maryknoll pray for us also. Amen.

_______

A couple of weeks before we found out the gender of our little one, I was looking through genealogy information to find out the exact relation of Fr. Cappel.  I was overwhelmed with emotion to learn that he was the son of my great great Aunt Nora. “Nora” being the name I was so fond of, and that I had already picked out for a little girl. “Wouldn’t that be something if this baby is a little girl,” I thought.

Signs, prophecies, hints, premonitions? I can’t say, but somehow I can’t add “coincidence” to that list and I will continue to pray for that miracle.

Today was the first day I was able to look at the ultrasound pictures that were taken at the beginning of January. After the diagnosis I’d stuffed them all into an envelope and “never wanted to look at them again”. Today I looked at them in a whole new light. They were no longer just “Baby with a chromosomal disorder”. They were pictures of my sweet Nora — my precious baby girl with the cutest little nose and mouth. She has a perfectly round little head just like all of her siblings did.

Saturday we go for the 4D ultrasound, which we’ll go to as a family. Gavin and Greta are excited to see their little sister. They realize she might not be with us long, but they love her none the less. They hug my belly and say goodbye to her before heading off to the bus stop, and pat my belly “hello” as soon as they get home. It’s sweet to have Nora included as a part of the family.

This sweet little girl who responds to the sound of my voice. I want to hold onto her forever and never let her go.

It seems hard to believe that we’ve known about Nora’s diagnosis for almost a month now. The time has certainly gone by at warp speed. I’m trying to savor each little moment of my pregnancy, as I don’t know what to expect at the end of it all.

I am so much more tranquil about knowing her gender than I had anticipated. The moments leading up to the cake cutting were absolutely nerve wracking. However, once I had the conclusive evidence in the form of PINK cake, I heaved a sigh of relief and breathed easy with the knowledge of a baby daughter. I love being able to call her by name, my sweet Nora.

I’ve always loved the name Nora. I like the way it sounds, I love that it is unique, classic and simple. It is a family name as well. I had a Great-Great-Aunt Nora that I never met, but I’ve heard stories about her — what a neat, funny lady she was. Today I got a phone call from my Mom asking me if I knew what the name “Nora” means. I told her that I hadn’t had a chance to look up the meaning, but asked that she please enlighten me! “Elanora” (which is what Nora’s full name will be) means “from the shore”. How absolutely perfect. My most precious, sweetest “treasure” yet. (See Day 4) I had NO IDEA. (And God doesn’t have his hands all over this???????????????)

I chose the name “Rose” in honor of Nora’s oldest sister, who shares the same middle name, also in reference to the Novena to St. Therese. At the end of the Novena a rose is received as a sign of answered prayers. Try it! Prayers were answered above and beyond with my first “Rose” and I DON’T DOUBT THEY WILL BE AGAIN. It seemed only appropriate.

Here is the video from yesterday: