December 13, 2012 Joseph's Birthday

I will never forget you. See upon the palms of my hands I have engraved you -Isaiah 49: 15-16

 

 

Singing Christmas Carols while Joseph meets his sister

Our little Angel

 

Dear Friends,

In this beautiful season of Advent, we welcome the Newborn King who came so that we might all have eternal life. Today our family welcomed our little angel, Joseph Angelo Mohler, born this morning at 9:40am. He left our arms and entered into our heavenly Father's at 10:40. During his time, we baptized him, prayed with him, sang songs including Christmas carols and held him. He was even able to meet all four grandparents and Aunt Katie. He knew only love and joy in his short life.

We are forever grateful to all of you for your support, love and prayers throughout our pregnancy. We will keep you posted on upcoming services and celebrations. A funeral mass will be held Saturday the 22nd at 10am at St. Marks in Catonsville and burial at New Cathedral Cemetary, a place very special to John's family, will follow. We would love to see any of you that would like to join us.

We are humbled and honored by your outpouring of gifts and flowers for us. We ask now instead, that you consider making a donation in honor of Joseph Angelo to The Northwest Pregnancy Center and Maternity Home in DC(http://www.northwestcenter.net/) to help other moms and babies in need, and continue to bring meaning to his life.

Sending much love to you all. We will provide you with more updates and details in the near future.

 

Jenny & John

Expecting the Unexpected; Joseph Angelo

“Come to me all you who are weary and burdened and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble at heart, and you will find rest for your souls. For my yoke is easy and my burden light.”- Matthew 11: 28-30

“The difficult times we fear are the very ones that can break us open and help us blossom into who we were meant to be.”  -Elizabeth Lesser as quoted by Mother Katherine Caldwell, TOR

“You can plan a pretty picnic, but you can’t predict the weather” -Andre 3000

“Do your best and let God do the rest” –Dr. Ben Carson

 

I have a significant, yet at the same time insignificant, update to share this week…. Angel Marie, we are told, is actually a boy! We were preliminarily told this last month and had it confirmed last Monday at our appointment. While it doesn’t really matter to us, it has been harder than I thought it would be to wrap my head around this news. We realize “the devil is in the details,” and are not letting this distract us from sharing, focusing on, and loving our child. We have thus given him a new name, Joseph Angelo. The name Angelo (and Angel) literally means “messenger from God” and His message of love is clear. As Father DeAscanis shared with us at spiritual direction last month, Angels, after all, don’t have gender.

Furthermore, at our appointment with the specialist this week, we learned that my amniotic fluid levels are increasing as Joe is having a difficult time swallowing and processing the fluid. This means that I will continue to get bigger, faster, and ultimately this may trick my body into thinking I am closer to term than I actually am, potentially causing little Joseph to arrive soon. Please continue to pray. I can assure you it is working, I know I could not be managing (and thankfully don’t have to be) on my own. “Where I am weak He is strong.”

For someone who is a planner, and a perfectionist, one who always has to be in control, (affectionately, type A if you will), I have learned many lessons in letting go and lessons in trust over the past few months…. And yes, this is probably the one and only blog in the world that quotes, Outkast, Dr. Carson and a TOR Sister in one post….  I am learning so much about myself, my incredible husband, and my wonderful family and friends in all of this. Certainly, how we react to the storms of adversity, rather than the good times, is what defines us. In life, I have found, there really are few times when we have absolutely no control over situations and when life begins and ends is at the top of the list (though many even try to “control” this and do, what I believe, only God has the authority to do). Our culture/society does not know how to handle these times. My family is thus experiencing/witnessing both of these battles at once, and the struggle is thus particularly intense. There is no way to prepare for both your child to come into this world and leave it, potentially within a matter of minutes of each other.

I can not say enough about how thankful we are for our faith and that we don’t have to go through this alone. We are prayerfully making the choices we have been offered believing in His will, and giving the rest to God. Anyway, more on suffering and redemptive love in the next post. Before I close, I would like to share a beautiful testimony with you that has inspired us and helped us prepare for what lies ahead. We are inspired by the  beauty and grace this couple received while expecting the unexpected. Click on the link below to watch at your own risk, and have some tissues on hand if you choose to do so (do not watch at work, trust me).

99 Balloons

“Not a pulpit, not a slick presentation, not a best selling book, just a 6 lb boy with Trisomy 18, God found great pleasure to take a lowly thing in the eyes of the world and show truth…. At your funeral we released 99 balloons, each balloon representing a day in your life, how beautiful it was to watch, how quickly they were gone. -Elliot’s Father

http://youtube.com/watch?v=th6Njr-qkq0

Thanksgiving 2012

“Give thanks to the Lord for He is good, His love endures forever.”                                                    Psalm 118:1

“Therfore, we who are receiving the unshakable kingdom should have gratitude, with which we should offer worship pleasing to God in reverence and awe. For our God is a consuming fire.”  Hebrews 12: 28-29

Thankful for my family (27 weeks pregnant) Photo Courtesy of Andrea Mellen Photography NILMDTS

Thankful for my family (27 weeks pregnant) Photo Courtesy of Andrea Mellen Photography NILMDTS

 

The entire fam in Greenville, South Carolina, 26 weeks pregnant

 

Thanksgiving Day 2012 at my parent's house (nearly 28 weeks) So much to be thankful for

 

This Thanksgiving, more than ever before, I am thankful for the gifts of faith, family and friends. I am thankful for our Angel and the lessons our little one is teaching us. I am thankful for all those who have contacted us whose lives have been touched by our story. I am thankful for all the support I have, for our wonderful Doctors, Isaiah’s Promise and Gilchrist Hospice. I am thankful most of all, for the gift of life in all its forms. I am thankful for today, for this day and every day I have with our little one. I am thankful that at our last visit with the specialist we were told our baby has a better chance of surviving till birth than was first expected and I was allowed to travel to South Carolina. We had a great trip.

I am thankful for God the Father and the examples of Mary and Joseph. How thankful I am to pray to a God of the Universe who knows the pain of losing His Son to this world, and the joy of the promise of Heaven and knowing He will live forever. How thankful I am for the intercession of Mary and Joseph, who during this season, carried their unborn Son, expecting the unexpected.

I must admit, I sat down to write this post before and did not feel very grateful. I had to pray about it and come back. Recently, creating a birth plan full of very difficult choices regarding life saving measures and interventions as well as making preparations to potentially bury our child is one of the most difficult things I have ever done. Being thankful and choosing life is truly a choice. We understand we have not taken the easy road. There are days when I choose fear, anxiety, selfishness, self-pity or grief. We are only human, sure I am sad for myself and the pain we are enduring, but then I make a better choice, and choose our faith, and trust that our baby will go straight to heaven and experience eternal joy.  Eternal joy sure sounds much better than a life here on earth, so we choose gratefulness over sadness.

I spent a day this week at The Northwest Center, (a pregnancy center and maternity home for those in need in DC, that I have been involved with for nearly nine years).  Whenever I go there, I am reminded of those who are less fortunate than I. Those who don’t have a loving husband, and family and friends to support them, those who might be in poor health, have little resources, no homes to call their own, no big Thanksgiving dinner, and little money to buy diapers, or access the best prenatal care.  Yet these moms and their children choose life and choose joy as well… They inspire me, and help me realize what is important, what really matters…. and I am grateful for all I have. I am thankful for the families served at NWC, for those close to my heart who serve them, and those who make the lifesaving work of The Northwest Center possible.

Finally, John and I are beyond thankful for the support of our church in all its forms. John wrote a thank you letter to Archbishop William Lori of Baltimore this week sharing our story, offering to help others in our situation.  We are so blessed with the wonderful support system we have received from the church we love so much. He wrote “What a blessing to have our church to walk with us on this journey, loving this life that began at conception, now 29 weeks ago.”

Loving Angel Marie; Starting a Blog

“You are the light of the world. A city set on a mountain cannot be hidden. Nor do they light a lamp and then put it under a bushel basket; it is set on a lampstand, where it gives light to all in the house. Just so, your light must shine before others….” Matthew 5:14-16

 

   I will start by saying I (Jenny) have never blogged before, nor have I ever had a diary or written more than two entries in a journal. I have often wished to start a journal at various times in my life but never been able to keep up with it. Well, “If you want to make God laugh tell him your plans.” My guess is that some of you who know me well got a little laugh out of me starting a website too ;) and so, humbly and prayerfully we begin our blog. Luckily, “God does not call the equipped, he equips the called.”… In all seriousness, John and I truly feel the Lord has been preparing our hearts all along for Angel Marie and we have been chosen for her and she for us. Having worked in a pregnancy center for five years and currently serving on the board for nearly four years, I am no stranger to the idea of “choosing life more abundantly.” Now more than ever I am learning, and Angel Marie is teaching us, what that truly means.

   I have started this blog for several reasons. Foremost, we wish to honor our precious daughter and the dignity and sanctity of her life. Secondly, we hope to share her life and our journey with you, while keeping you updated on our pregnancy as it progresses. Finally, we feel called and it is our hope that someday we will share our experiences (whatever they may be) with others facing adverse prenatal diagnosis.

   Angel Marie is now and always will be a part of our family. She is a daughter, sister, granddaughter, and great-granddaughter, but most of all, she is a Child of God. She is an active little girl, kicking, flipping and even sucking her thumb (as we saw on our last sonogram).  She can hear (and has been able to do so for nearly 8 weeks) and we sing and talk to her often. She has sleep and wake cycles and, like her mom and sister, is active in the evening and sleepy in the morning. No matter how hard it may be to lose her, we want to honor her life and celebrate her as much as we can each day in the short time we may (or may not) have with her here on earth. We love her no matter what and want to share with others. We want to share that her life here has meaning and a divine purpose.

    As more time passes and we are over the initial shock of receiving a terminal diagnosis, we are growing stronger and are more at peace with sharing our experience, so please don't feel bad about asking about her and talking about her. She has already deeply  touched our lives and so many others. A mutual friend, Katie, on facebook facing her own adverse prenatal diagnosis writes ”Knowing the incredible God we serve and trusting in him wholeheartedly, Patrick(her husband) and I are at peace because we know that God's will is GOOD and RIGHT and PERFECT. Every day that this baby's heart beats is a miracle and we pray that Christ would use this situation to equip us to mirror him to the world.” We could not agree more.

   Finally, it is our hope that we will someday be able to share our story with others in similar situations, that this web site might be a resource and source of hope. Feel free to post and comment and share your words of encouragement on each post. I have read several articles and studies that state as many as 80 to 90 to 95% (depending on the study) of mothers receiving adverse prenatal diagnosis choose to terminate their pregnancies. This is truly tragic. So many have already helped us along the way (more on that to come in another post), and I pray that God will provide us with opportunities in due time, to share his light to others as well.

The Peace that Surpasses Understanding: The first 6 weeks post-diagnosis

Rejoice  in the Lord always. I shall say it again: rejoice! Your kindness should be known to all. The Lord is near. Have no anxiety at all, but in everything, by prayer and petition, with thanksgiving, make your requests known to God. Then the peace of God that surpasses all understanding will guard your hearts and minds in Christ Jesus. -Philipians 4:4-8

John, Abby and I (21 weeks pregnant) at an Orioles game

In Disney World (5 weeks pregnant)

 

As you can imagine, the first five weeks since receiving Angel Marie’s terminal diagnosis have been a whirlwind. One mother in our situation writes “I never knew I was capable of so much, grief and love at the same time.” To that I add hope, joy and pain. We are so touched and overwhelmingly grateful to all of you who have supported us in so many ways. We are especially thankful for all the prayers.

 I can assure you that we feel your prayers and have a new understanding of “the peace that surpasses all understanding.” It is truly God answering all your prayers because I do not know how we would be doing so well otherwise. I can honestly say that John and I are at peace and doing very well after praying through the initial shock.

We believe in miracles. Either there will be a miracle (and as I have said before miracles come in many forms), or God will continue to bless Angel Marie on her path to heaven, knowing only love, and allow us to humbly be equipped  to share our faith, love of life, and belief in heaven with others. Already so many people have been asking us how we are so calm, and it has provided us with many opportunities to share God’s peace and grace.

Since the diagnosis we have been “choosing life” daily in celebrating Angel Marie in many ways. We have shared with her many of our favorite meals J, an Orioles game, VT football game, apple picking, and fall trip to Capon Springs West Virginia among other adventures. In her short life, she has already gone to Disney World, the beach, out dancing several times and more. God willing, and pending our visit with the specialist again on Monday, we hope to visit South Carolina next weekend. (Prayers appreciated, will keep you posted!)

Playing at Centennial Park (23 weeks pregnant)

 

The Diagnosis and The “Choice”

“I have come that they might have life, and that they might have it more abundantly.”                     John 10:10

“I have set before you life and death, blessings and curses…. now choose life…” Deuteronomy 30:19

On September 27, 2012, we received the news from the specialist; our precious baby girl has Thanatophoric Dysplasia, type II, a very rare and severe disorder ( I will spare you the details, google at your own risk). We were told she is not expected to survive the pregnancy and if she does, her little lungs and heart will not likely be able to sustain life. At that point, the specialist gave us a choice to make; “if” we wished to continue the pregnancy.  For John and I, the choice, but for the grace of God, had been made long before we were even married, long before we chose a Pro-Life Doctor, before Abby was born, and long before we sat in the High Risk Perinatologist at Sinai Hospital’s office chairs. We both have always believed very strongly in the value and dignity of all human life, in all circumstances. We unflinchingly shared our choice with the specialist and were joined shortly thereafter by our wonderful Doctor who has supported us every step of the way.

Since that day, we have had a “choice” to make, we can view our daughter as a diagnosis, and bury ourselves in grief for our own potential loss, or we can see her as part of our family, as the child of God she is created to be, journeying towards heaven as we all are…. As I hope to share with you throughout this blog, we have “chosen life” and to love her for as long as she has life and beyond. We have made a choice to celebrate and enjoy each day that her heart beats as the gift from God that it is. We have chosen to share her with you in hopes that she may impact your lives as she has ours, treasuring every moment.

Angel Marie's Baptism

On October 7, 2012, at 21 weeks of pregnancy, Angel Marie received the Sacrament of Annointing of the Sick and the Sacrament of Baptism. In a small service surrounded by family and her God Parents, (both John and my parents), lead by Father Whately at St. Mark's, she received the "Baptism of Desire," a tradition in the Catholic Faith in which if a person wishes to be Baptised, they already are. As Catholics we believe a Sacrament is "an outward sign of God's Grace," and we truly felt His grace and peace as we celebrated our little girl, her life and potential journey to heaven (whenever that may be).

Additional Resources for Adverse Prenatal Diagnosis

Below is a list of resources and articles that have been helpful to us;

Isaiah's Promise
http://www.isaiahspromise.net/
http://www.washingtontimes.com/news/2009/may/10/mothers-choosing-not-abort-children-disabilities/

Be Not Afraid
www.benotafraid.net
http://article.nationalreview.com/422510/parents-be-not-afraid/kathryn-jean-lopez

For Love of Angela
http://00434a2.netsolhost.com/nancymayerwhittington

I Will Carry You; The Sacred Dance of Grief and Joy
http://www.amazon.com/Will-Carry-You-Sacred-Dance/dp/080546428X
Bring the Rain
http://angiesmithonline.com/

Loving Peter (recent Catholic Review article)
http://lovingpeter.blogspot.com
http://www.catholicreview.org/article/home/st-ursula-couple-chose-life-though-it-also-meant-death

Now I Lay Me Down to Sleep
www.nowilaymedowntosleep.org

The National Catholic Bioethics Center
www.ncbcenter.org

Sharing the news, September 30, 2012

Dear Friends,

Thank you for all your love, support and prayers, we are so blessed by you.

This past Thursday, We received a rare and very serious adverse prenatal diagnosis for our little girl (Jenny is 20 weeks pregnant). Our baby is not expected to survive the pregnancy and if she does, she will die shortly after birth. We have chosen to find out it's a girl and have named her Angel Marie. Obviously, we are and always have been united in our belief that every baby is an irreplaceable gift from God and every child is a blessing with divine purpose. We are preparing to pray our baby girl into heaven all the while praying for a miracle.

We know you are asking what you can do, and we appreciate all your support. At this time, other than prayer there is not much you or we can do (or could have done.) For now, we will live out our decision to "choose life and choose it more abundantly," and plan to continue our daily routines while loving Angel Marie to the fullest. We are due in February, but have been told we may loose the baby at anytime up until then. We are asking for your understanding of our need for privacy. Although this is clearly not a secret, we will share our experience further and ask for help as we need and see fit. We apologize for the email correspondence, but as you can imagine, we want you all to know but don't quite have the strength to share and re-share our story quite yet.

We are overwhelmingly grateful for the gifts of each other and Abigail Grace as well as our extremely supportive parents, wonderful loving family and friends and Dr. Sorra (our incredible Pro-Life Doctor, who fully supports our decision to continue the pregnancy, despite the odds). Thank you again for all your support and prayers it truly means more than you know and will sustain us through the next four months and beyond.

Gratefully,

Jenny and John