Our Journey

Our Journey March 19, 2012

Good Monday morning, dear readers!

I have some news that I have been wanting to share with our Building Cathedrals family for some time now. As some of you may have already gathered, I am pregnant with baby #5 and due around the 4th of July.

Shortly before Christmas, we found out that our baby has a condition very similar to that of our first daughter, Lucy Rose (and also Kellie’s (“Red’s”) sweet Therese Joy), a neural tube defect called acrania/anencephaly.  This means that the skull, and therefore the brain, have not developed properly, and that our baby will not be able to survive after birth. Some babies with acrania/anencephaly are stillborn, as Lucy was, while some live for a couple of hours or even a couple of days. There is no way to predict the length of this baby’s life, but we will be prepared for all scenarios and will celebrate this baby’s life, no matter how short or how long.

We have talked to several different doctors who are experts in their field, and at this point in time there is no medical explanation for why we have now had two babies with neural tube defects. There are a few places across the world doing research on NTD’s, and we will participate in all of their studies. However, the genetic counselors tell us to expect that nothing abnormal will show up, which was the case when we had Lucy’s cord blood tested as well.

We have recently also found out that our baby is a girl, and have decided to name her Anastasia Rose, but will call her Annie. Anastasia has several meanings for us – in Latin, Anastasia means “to stand again,” and St. Anastasia is mentioned (along with St. Lucy) in the litany of saints following the consecration at Mass. We love hearing Lucy’s name when we go to church, and will look forward to hearing Anastasia’s name as well. Rose is the middle name for all four of our girls, and is in honor of Our Blessed Mother.

At this point in time, our family is doing very well and we are just taking one day at a time. We are sad for many different reasons, but we are also joyful because we know that God has a very special plan for our family. We are also upheld and humbled by the kindness and support of our friends and family both near and far. It is not easy to walk with someone through suffering, and we have watched many people overcome their discomfort in order to ask us how we are doing, how they can help, and how they can be praying for us. For us, these signs of compassion and courage are humbling, and we are reminded daily of how blessed we are to be a part of such wonderful communities.

In a recent conversation with our wonderful pastor, we received some great advice on the questions and thoughts that we might reflect on. It dawned on me that these thoughts apply not only to our situation, but to all of us as followers of Christ, and so I would like to share them here.

*Rather than asking God what he wants me to do, ask instead who he would have me be.

*How will I parent my child, and how will I allow myself to be parented – by God, by those who love me, by my community?

*God does not ask of us the impossible – he only asks us to do the ordinary, and he will take care of the extraordinary.

*When faced with difficult choices, always make the loving decision.

Thank you for letting me share my thoughts here at Building Cathedrals, and please feel free to ask questions. I will continue to write about Annie and our family, as these are the things that I am thinking about these days. Each family has its unique blessings and struggles, and we do not count our struggles as any more painful than those of other families. Please be assured of my continued prayers for all of our readers.

Many blessings to all of you as we enter this fifth week of Lent. Mary, Mystical Rose, pray for us!

Browse Our Archives

What Are Your Thoughts?leave a comment
  • Juris Mater

    Kat, you are so brave. Your faith and faithfulness as you carry this particular cross a second time are much stronger than mine, and you’re the one suffering the loss.

    Asking God “who he would have me be” changes everything, and I’ve never thought about it that way. Thank you!

    Also, Kat, it’s not easy to include others in your suffering and grief. It takes tremendous generosity and humility. Thank you for sharing your very difficult journey with us, both surrounding Lucy’s life and death and now Annie’s. I can’t tell you what a gift that has been.

  • I am humbled and awed by your courage in sharing this part of your family’s story with all of us who gather here. I will hold you and Annie in my prayers, and pray that God continue to bless you with good doctors and nurses, and the loving support of family and friends.

  • Katrina,

    My sister had the same condition and did die immediately after she was born. My mom told me that the reason they had me was because at the time, the doctors encouraged getting pregnant immediately after losing a child. I don’t know what is right, but I just wanted to tell you that I am so so so sorry.



    “The LORD is close to the brokenhearted and saves those who are crushed in spirit.” Psalm 34

  • Tara Edelschick


    Thanks for writing, for modeling a way to stay close to Jesus in the valley. I lift up you, your family, and your precious baby into the arms of the one who knows exactly how excruciating it is to watch your child die.


  • Kellie “Red”

    I love you. You and Annie are constantly in my prayers. Thank you for sharing her with all of us. She is a very blessed baby to have such a wonderful Mom (and Dad!).

    I must admit that Annie’s diagnosis still brings me to tears almost every day. Faith is continuing to trust God when we do not like, nor do we understand, the cross he has asked us to carry. Thank you for your faith Katrina. It humbles and inspires me.

  • Diana

    Your witness of courage, faith, and grace is truly remarkable and greatly appreciated. Please be assured of my prayers for you and your family. I pray our Lord will bring you comfort and peace now and always, and hold you and yours close to His heart.

  • Guest Contributor

    Katrina, I had a pregnancy like that that ended in the second trimester. It was extremely tough to deal with, and I am in awe of your courage and faith. May God be with you and provide you comfort and health.

  • KD

    Katrina, you have such an amazing outlook and faith while carrying such a cross. Annie will be in my prayers, as will your whole family as you make this journey. When we lost our baby boy in the second trimester, I often found comfort in reflecting on Mary, Mother of Sorrows, and knowing that our blessed mother had felt the sadness of losing a child. I can’t imagine how difficult it would be to have to bear a second loss. I hope that in your dark moments, you can find hope and strength in the prayers of others around the country.

  • jess a.

    We are praying for you & Annie & your entire family, Katrina. Indeed, you are courageous and strong and we are honored that you include us in this journey. Your honest, kind and loving approach brings muchglory to God. May the Holy Spirit continue to uphold you. With love, Jess

  • Bethany “B-mama”

    Katrina, you are heaven-sent to teach us all about following God’s lead and being peaceful and joyful in the process. Thank you for your openness and willingness to let us in on the journey… I am always learning watching you.

    Your priest’s wisdom is also so blessed–“Who he would have me be?” is thought-provoking and convicting in many situations. I am going to tuck that one away in my pocket for use when I can be a more Christly example no matter what the test.

    Much love to you and many tear-filled hugs, sister.

  • Saoirse

    Prayers for you and your family. I find your strength inspiring.

  • Stef L.


    Your story is both heart breaking and inspiring. You and your families response to such a trying situation is an example to all. I will continually be in prayer for you, your husband, and your girls. God always gives us the grace we need at the time we need it.


  • Philip

    So sorry to hear this, Kat. Lisa and I are praying that God would sustain you, Ed, and the kiddos during this time. Lots of love, Philip

  • Dear Katrina –

    My prayers are with you and your family. Your faithfulness is absolutely inspiring.

    Blessings to you and your family,

  • Lucy

    Your family and sweet Annie will be in my prayers. I have never met you, so sharing this thought seems strange. But I share a name with your first daughter, and so for some reason, I feel moved to share this thought even though I know you only from reading this blog.

    My great-grandmother, for whom I’m named, lost one of her daughters in an accident when the daughter was a toddler. Grandmother Lucy lived to be 98 years old and was one of the most giving and selfless people I have ever known. I often think of her watching over me when I’m facing something difficult. Tonight in my prayers. I will think of two Lucy’s, one a precious infant, and one a precious old lady sitting with Jesus and watching over you.

  • Donna

    Oh Katrina, this is so painful to hear about. You are amazingly peaceful and calm and the Holy Spirit just jumps at me from your words. God bless you, Sister in Christ. I know God loves little Annie even more than you do and His perfect will is beautiful. Sweet Annie, like Lucy, will never sin or offend Him. God bless you as you usher this saint to heaven. God must love you so much to refine you so well for Himself.

  • Steph

    Words cannot express how your courage in sharing and amazing grace have impacted me (and many others, I imagine!). Thank you so much for your perspective. When I had a miscarriage in the first trimester, I found myself vacillating between extremes of ‘this is to expected, common even, I shouldn’t sweat it’ to ‘this precious life was inside me and now it’s no longer on this earth–complete and utter sorrow.’ I think that you have found the balance God asks–just because death is a fact of our earthly existence doesn’t make any one life less precious and important to us (and God) and yet we are asked to trust Him and know, that this is, in fact, part of our earthly existence while we look forward to going home. Thanks for your beautiful witness. I cannot imagine how difficult it is to share. I pray so many blessings upon you and your family through this experience and beyond.

    Thank you, too, for sharing the insights you gained from your pastor and your experience. I was very struck by the “when faced with difficult choices, always make the loving decision.” Although it feels like it should be part of me, I lose track of that in my daily life. Thank you.

  • Kathy

    Kat and family,

    Again, my condolences on the diagnosis of your daughter, Annie. When I read your statement about a second journey with a NTD baby, I was hoping that if Annie had to be diagnosed with an NTD it would be one, like spina bifida, for which there could be some medical treament.

    Like so many others, even though I know you only from this blog, Annie and your entire family are in my prayers. You are certainly an example to us all (like Red and others who have lost children) of grace under pressure.

    The thoughts you shared with all of us from your pastor are helpful to us all.

    Hopefully this blog will be a source of extra support during this most difficult journey. As I read the older posts from before I joined readership, I was struck by one of the photos from your daughter Lucy’s birth – the color one with you holding her in your hospital bed. In a modern way, it reminded me of the Pieta. Hopefully that kinship you and others have with Mary (in one of her most important roles on this earth) will strengthen you and your family throughout this journey.

    My prayers for all of you. I am so sorry.


  • Ann

    I love you, Katrina. You’re courage is unmatched in my life. I am honored to know you and to be a witness of the ways God’s compassion and love well up in you. I see joy in you when most would feel utter despair. I pray for you constantly that you’ll feel the fullness of Christ and also give yourself moments to be as you feel.

  • Thank you for your bravery in sharing your story. Know that you and your family are and will continue to be in our prayers.

  • Katrina, you and your family will be in my prayers. You are such a beautiful, strong mother and a courageous woman. Thank you for sharing your story and wisdom. We have a close friend who is about to deliver baby #6 with this condition. She has 5 girls and this one is her 1st boy so we are all grieving on many levels. It brings tears to my eyes just thinking about you all, but I know our Blessed Mother is keeping you in a special place in her heart. God bless.

  • texasmommy

    Thank you so much, Katrina, for sharing your beautiful, moving journey with us and for teaching us all about grace and trust.

  • Katrina

    Thank you very much, everyone, for your kind and loving words here. I am so moved by the concern of others, and feel very connected to all of those in the body of Christ during times like this.
    Blessings to all of you who have lost babies before/at/after birth, and to all of you who have lost older children. I pray for you often.

  • Many prayers for you and your precious Annie. We are getting ready to move and as small as it might be, know that I am offering up all these little things for your family.

  • Catherine

    I’ve been remembering you in my prayers often and will continue to do so. Thank you for sharing about your journey. It’s a blessing to your readers. My husband had two sisters and a cousin with NTDs, so your journey is dear to our hearts.

  • JMB

    This brought tears to my eyes. I had no idea – how humbled I am to think I may know anything about anyone here in this world. My prayers are with you and your family.

  • Kim

    Not so negative. Intriguing issues here

  • Marisa M.O.

    Dear Katrina,

    You are such an incredible woman of God, and I am so thankful for your presence in this world. Your courage and strength rooted in God during this challenging time are so inspiring. I have loved reading this blog and staying connected with my Aquinas ladies from afar. I want you to know that you and your family are in my prayers, as are the other building cathedrals ladies. You are all so encouraging, and now that my family is growing with our first child being due soon, your words and wisdom for building a catholic family are so meaningful for me. Thank you so much for all that you are sharing and for your amazing example of God’s grace in this world.

    Many blessings,

  • Marisa! So good to hear from you, and congratulations on your new little one! When are you due? I would love to hear more 🙂

  • Nina Cotton

    God bless you and your family. There will be many prayers going your way.

  • Mary


    You will very much be in my prayers and thoughts and I am grateful to God that there are women like you with the courage and strength to give witness to the value of Annie’s life. I will especially ask the Lord to give you and your husband the gift of His peace during this difficult time. I have good friend whose daughter (named Mary Bernadette) was also born dying, and she and her husband had the consolation of Mary dying in her father’s arms, surrounded by the family who loved her and stayed with her for the short time she was with them on this earth. She lived on in that her organs (her heart valves and her corneas) saved and/or improved the lives of three sick infants. My friend did a lot of research on infant organ donation and learned that it is very difficult for parents of sick infants to even hope for an organ donor, since so many babies who have illness incompatible with a longer life are aborted prior to birth. God bless you!

  • Katrina,
    This is my first time reading- a friend of mine sent me the link to this post because she thought I might connect with your story. I’m also due in early July (July 12) with a precious little baby who is not expected to live after birth and will most likely be stillborn. Your confidence in God’s plan for your family despite heartache touched my heart because, sister, we have the same hope. =) My husband, son, and myself have been so touched by prayer on this journey so far, and I wanted to let you know we’ll be praying for your family and your little Annie as we pray for our own little Jubilee.

    May peace and courage continue to be lavished on you,


  • kimberlee

    I am so very sorry you are going through this. Again. Our daughter lulu died shortly after she was born with the same NTD 10/4/10. We have been blessed to have gone to Dave & Nancy Guthrie (from GriefShare) Respite Retreat. So very blessed. But since I have dreamt of having to go to it a 2nd time. The thought of 2 losses is overwhelming, but as God proved during my last pregnancy, He is bigger than death. And Jesus holds the keys! I only find comfort that in leaving this earth lulu, Jesus was the first one there to welcome her into His kingdom.

  • Dear Brittany ~
    Thank you so much for sharing, and I will be praying for your family as you prepare to welcome sweet Jubilee. I am planning a post on resources for families in similar situations, but wanted to mention a beautiful website called “A Place to Remember” – http://www.aplacetoremember.com/
    I have bought some gowns and bonnets for Annie, and also used them for Lucy, and have been very pleased with their reasonable prices and beautiful items. They also arrive very quickly, within a few days, if Jubilee arrives earlier than expected.
    Blessings to you, Brittany, and to your family!

  • Oh my goodness, Kimberlee, what a small world it is – did you know that Kellie’s (Red’s) daughter, Therese Joy, also had anencephaly? Thank you so much for reaching out, and for reminding me of the retreats offered by the Guthries. I have heard of them through a group called M.E.N.D., but it is good to hear that you had such a positive experience.
    If you had to walk this road again, Kimberlee, you would be showered with grace and strength, and you would be surprised at what you can do with God’s help and the support of others. God bless you!

  • Oh, Katrina. I’m so sorry and will be praying for you and your beautiful family. Love Rachael C (nee Patterson).