We found out some news at our 12 week ultrasound, however, that was very hard for us to hear, and wasn't confirmed until our 16 weeks appointment that we had just recently. Our amazing little boy was diagnosed with something called anencephaly, or acrania, a neural tube defect that causes the skull and parts of the brain to not form correctly or at all. This rare disorder is not viable with life so he will either be stillborn or live only a short time. While this has been very difficult and is very hard for us to understand we have felt so much peace throughout this process, from all of the prayers we have had for us and our little family.
While this is very sensitive and personal information, and we debated how much we wanted to share with the world, we have felt very strongly that we want everyone to understand our perspective on this. We have complete faith in a loving Heavenly Father, who loves us very much, who is watching over our family, and who has a greater plan in mind for us than we can understand right now. We know that we have a Savior, Jesus Christ, who suffered all things for us, is able to carry our burdens, and has made it possible for us to live with our little boy again. We find incredible peace and comfort in the Plan of Salvation, that teaches us that we can be a family forever, because of the blessings that come from being sealed as a family for eternity in the temple of God by one who holds God's authority. We know that while this will be one of the greatest trials we will experience, there will be great blessings that can come from this if we let them. We know that we are here to be tried, to grow, to become better, and this is one of the best opportunities we will get in this life as we will have to say goodbye so soon to the little boy we already love so much.
Another reason why we wanted to write this post was because we have felt so much love and support from so many family and friends already, and we can only imagine many of you might be wondering how to offer support and comfort to us in this situation. We are having twins, which we are so excited about, but we will only be bringing one little baby home with us. We want you to know that we still feel grateful for this blessing in our lives to have these two little babies in our family and want to feel the excitement and happiness that can come from this experience. We decided that we want this to be a time of bonding for our little family and a time for our family and friends to get to know this little baby boy too. We knew that an important part of this would be having a name, so we've decided to name him Owen Matthew. Honestly, the name for this little guy came easily; I think we were being prepared a while in advance. (Our baby girl will have to wait a bit, girl names have been a bit harder for us:) When people would ask me what I thought I was having I would tell them I thought there was a boy in there somewhere. What I didn't tell them was that I knew there was a boy in there. I've known I was going to have a little boy for a long time. Owen was meant to be a special part of our family.
We especially wanted to write this as a big thank you to all of you for the outpouring of love and support we have received already. There isn't a greater blessing than knowing you have so many friends and family members who celebrate with you during the exciting times and mourn with you during hard times, and who are consistently there ready to give you any support and comfort you might need. While there will be many moments of tears and sorrow for us, we feel mostly gratitude for all of the many incredible blessings we have in our lives. We are most especially grateful for our faith and for a God who loves us more than we can understand and who will carry us through this experience.
If you are interested to find out more information about anencephaly, please resist the urge to google it. While the websites are informative, they are mostly medical. These are some great blogs that have information and a positive outlook on this disorder.
http://anencephaly.info/e/index.php
http://vaporandmist.wordpress.com/
Some of the scriptures and talks from beloved prophets and leaders that have particularly helped us during this time are:
-Mosiah 24:13-15 from the Book of Mormon
-A talk by our most wonderful prophet, President Monson
-A talk by Elder Bowen that I never knew I would need so much
-Elder Holland:
"I testify of the holy Resurrection, that unspeakable
cornerstone gift in the Atonement of the Lord Jesus Christ! With the Apostle
Paul, I testify that that which was sown in corruption will one day be raised
in incorruption and that which was sown in weakness will ultimately be raised
in power. (1 Corinthians
15:42–43) I bear witness of that day
when loved ones whom we knew to have disabilities in mortality will stand
before us glorified and grand, breathtakingly perfect in body and mind. What a
thrilling moment that will be! I do not know whether we will be happier for
ourselves that we have witnessed such a miracle or happier for them that they
are fully perfect and finally ‘free at last.’ Until that hour when
Christ’s consummate gift is evident to us all, may we live by faith, hold fast
to hope, and show ‘compassion one of another.’(1 Peter 3:8.)” (“Like A Broken Vessel”, Elder Holland, Oct. 2013)
We thought we'd leave you with a short video of baby Owen sucking on his toes. Oh we love him so much already!
We thought we'd leave you with a short video of baby Owen sucking on his toes. Oh we love him so much already!
Thank you again for all of your love and support,
Nicole and Matthew
