FINDING OUT

 

"Endure and persist. This pain will turn to your good by and by."  -- Ovid

 

Jonathan

 

I have a plan for Jonathan

Beyond all wishes and dreams.

I have a plan for Jonathan

Greater than all that seems.

 

When I created the universe

Jonathan was joy in my mind.

Singing our song of creation,

United to all mankind.

. . .

.

Together we embrace all love

And pain of every kind;

Our plan of love for everyone,

Transforming all mankind.

 

To know the gift of Jonathan

Is to know his life in me.

Fantastic love! Fantastic joy!

For all eternity.

. . . .

–Monsignor James A. Brassil (Selections for a poem for Jonathan who was born with Potter's Syndrome)

 

Either you or someone you know has received a serious prenatal diagnosis.  How can you cope with the  unsettling transition from where you were before the diagnosis to where you must go?  Perhaps the way to begin is to know that others have been where you are.

 

UNEXPECTED NEWS

 

Learning that your unborn child has severe difficulties catapults you into a parallel universe where you are dealing with crisis and uncertainty while everyone else seems blissfully busy about the everyday.

 

Celine is our second child. When I became pregnant, her brother was only five months old. This caused me a bit of stress, since I was still adjusting to a new baby, and the idea of another one was overwhelming. Maybe because I was preoccupied with my own feelings, I was not really enthusiastic about the ob visits, the ultrasounds, shopping for baby things, etc. All of this changed at our 22 wk ultrasound. Suddenly, the baby became the center of my universe.  (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)

 

When you went for your first routine ultrasound, you were probably expecting to find out the baby's sex[1] and size.  You never thought that something might be "wrong" with your baby. 

 

We were so relieved to see our baby moving. The tech pointed out the heart and spine and everything except for the brain. She went to look for the doctor. We stayed in the room talking about all our plans for this child. The doctor walked in and said, "Your baby has anencephaly. The brain never formed." My world stopped. I remember asking if this meant our baby could die and she said yes, it would definitely die. I can't even begin to write of the emotions of that day or of the pain. (Sue, mom of Lucas Adam, who was born with anencephaly)

 

I was rather anxious before the ultrasound – I just wanted to make sure everything was ok. You know, count the fingers and toes and watch him (or her) wiggle and kick.  I figured it was normal anxiety and I was being silly.  Little did I know.  The technician kept looking for kidneys in the baby and couldn’t find them.  That’s when my heart started breaking.  The doctor threw out a few words like Potter's and oligohydramnios.  Potter's is a condition that is completely incompatible with life outside the womb.  She told us that we will survive, though it will be a tough road.  We saw tears in their eyes, too.   We were scheduled for a more detailed ultrasound.  I don’t remember anything except crying in my husband’s arms.  We were in shock.  We closed in to ourselves and told everyone that the ultrasound had been rescheduled.  We had to absorb the situation some first.  (Anna, mom of Joshua who was born with Potter's Syndrome)

 

When you receive a serious prenatal diagnosis, you are overcome with anger, confusion, disbelief, denial, or grief.   You may wish you were dead or that your baby were.  You may try to bargain with God.  "Let it be me instead of my baby."  Your mind is too numb to process the information.  How can you survive the next twenty four hours much less the distant future?  How can you endure the waiting?

 

I spent hours on the internet looking at Trisomy 18, and everything pointed to the fact that our baby was most likely to be stillborn, or if she were born alive, she would likely live only days, hours, or even minutes. How do I even deal with this? I spent a lot of time hugging my other children, praying, and of course, crying. The praying was hard, because I didn’t know what to pray for.  The emotions were really intense, and they kept changing.  I was amazed at how angry I was about being pregnant and how much I hated it at that moment. I felt like it was a constant reminder that my baby was going to die. It seemed like such a waste to be pregnant when my baby was going to die.  And it was almost unbearable to think about those who didn’t know and who were going to ask me cheerful questions about the pregnancy. How could I endure this? I just wanted it to be over.  Eventually, I got exhausted from crying and actually felt a lot better. Later that evening, searching the internet as usual, I found the Carrying to Term pages and saw a section about early emotions that said that it is common to hate the pregnancy for awhile, but that it would pass quickly. That made me feel better (hopeful) about it, and that feeling did pass in a couple of days. (Mindy, mom of Abigail who was born with Trisomy 18)

 

That night I was haunted by horrific visions.  I tried to pray and find comfort, but I would wake up and want to flee.  I kept thinking of my baby's nose; we were told that, besides the holoproencephaly, our daughter had no nose.  How would I ever find the courage to gaze upon my daughter at her birth?  I had no strength to persevere and my tears flowed incessantly.  I wanted to run and run and bring along a pre-term labor so I could be done. I felt so alone.  (Doreen, mom of Gianna who was born with Trisomy 13)

 

You need time to process the diagnosis without making any decisions until you can think clearly. 

 

The doctor described our daughter just as she looked when she was born.  I was in shock. At that moment, if they had taken me to an abortion room, I would have trusted them that they were doing what was best.  As it was, the doctor said, "Go home and think about how the baby is different."  (Patricia, mom of Jessica who was born with limb deficiencies of both arms and both legs)

 

You may be in what one parent called "nothingness."  Nothing exists in your mind except your child

 

When I received my baby's diagnosis, the book they gave me was full of a lot of stories of people who terminated their pregnancies and only a couple of stories of people who carried their babies to term. It was hard not knowing/realizing that other mothers out there DO carry their babies, too. It seems so hard to plan on carrying to term anyhow right after the diagnosis, but with time it becomes do-able. Moms need to give themselves some time before making their own decision. For me, the experience of carrying Joyann to term was worth it all. I enjoyed my time with her so much. I never regret a moment. (Jewell, mom of Joyann who was born with anencephaly)

 

Your feelings toward other pregnant women and healthy babies may have suddenly changed. 

 

Right after the diagnosis, I was sitting in the waiting area. Another woman walked in, obviously pregnant. Normally I would have asked her how far along she was. I did not. I just had this sudden awareness that I was now in a different club than she was. She was still bright with expectations; all my hopes of caring for a child had just been taken away. To have started a conversation would have just distressed her.  Oddly, I did not really envy her, nor did I resent other women who carried newborns in the grocery store. I did not begrudge them their child, but I did look at them and wish that my daughter might have the chance to do those things with me. Seeing them did sometimes cause me to feel saddened or wishful, and to wonder if they really knew how much of a miracle a child is. (Laura, mom of Sidney who was born with a lethal form of dwarfism)

 

I had a hard time with obviously pregnant women.  I hated my doctor's appointments.  I would go in praying to still hear a heart beat but also wanting this nightmare to be over. (Sue, mom of Lucas Adam who was born with anencephaly)

 

Imagine the worst case scenario and picture yourself dealing with that.  Then you will feel prepared for that and anything less.

 

SELF BLAME

 

You may ask, "Am I responsible for this?" 

 

The radiologist said, "Here is his nose, here are his eyes, and normally you would expect to see a head behind them." What a lousy way to announce the devastating news of anencephaly! I was stunned! I put my hand over my ears and cried out to tell him to stop!  I immediately turned to my midwife and said, "Carol, this is all my fault.  This is because of the medication I took early in my pregnancy!!!!!."  (Ann Marie, mom of Loren Joseph who was born with anencephaly)

 

This was my third baby, and I thought, "What if this is real?  How do I tell my family?  Will everyone accept her? When she comes out, how will I react?"  I kind of fell apart at that point.  For a good portion of the evening, I felt as if there was something I did that may have caused it.  (Annalee, mom of Brooke who was born with nodules for fingers and a boneless thumb on her left hand)

 

Self blame is not only unhealthy; it is also false.  In Loren's case, many moms took the same medication that Ann Marie had taken and without any serious effect.  Brooke was affected by amniotic band syndrome for which there is no cause and effect.

 

Moms with excellent prenatal care have children with severe problems.

 

Since I had experienced three previous miscarriages and preterm labor in the latter of all my pregnancies, I made sure to take the proper vitamins and eat a healthy diet.  At the beginning of my second trimester, I limited my activities to avoid complications of preterm labor.  By adhering to this discipline, I believed I would have a healthy child.  (Doreen, mom of Gianna who was born with Trisomy 13)

 

I  felt a great need from the beginning of the pregnancy to not do anything that might hurt the baby. I took no meds but Tylenol, ate very healthy, and even went through two miserable sleep studies to get CPAP prescribed to improve my oxygen levels at night.  I have the assurance that I did not do anything to add to Sidney's burdens. (Laura, mom of Sidney who was born with a lethal form of dwarfism)

 

Then I heard the word "anencephaly. Are you familiar with it?" I said immediately, "Yes, but I was taking folic acid.  What does this mean?" They said, "Of the babies that are born with anencephaly, only about half of them are born alive. Most are stillborn." (Jewell, mom of Joyann who was born with anencephaly) 

 

Time is too precious to waste on self-blame.  Blame pulls the focus away from the time you have with your baby.

 

QUESTIONS

 

You may ask:

 

Are the doctors right?

What can be done?

What is this going to do to my life?  My family?  My plans?

How am I going to handle this?

Is God punishing me?

How should I act now?

 

Then I started having strange thoughts and feelings like maybe my baby wasn't really alive and maybe people wold think I wasn't pregnant anymore.  I wondered if people would think I shouldn't act pregnant anymore.  (Mary Sue, mom of Luke Daniel who was born with anencephaly)

 

Will I be able to look at my child?

 

Yet, practical thoughts worry me: how will we react at the sight of the wounded head?  Anouk is born at 5:21 p.m.  The midwife just put a little cap on her head and I can finally hold her. She is alive! Is she going to start breathing? The world around me stops and the most important thing is my daughter.  Although I clearly know that she is going to die, I am so happy. Joy fills the room around us; joy and peace. Anouk starts breathing gently: uncertainly at the beginning, but then in a more and more regular way. She is so tiny, especially her head.  She looks like the three others did at the birth.  After our parents' visit, I remain alone with Anouk.   Now I am ready to have a glance under the bloodstained cap. The wound is awful but belongs to Anouk and does not shock me. The room is so quiet and I am so happy that Anouk is alive, but I must confess that I will be soothed when she dies. She certainly cannot live.  (Monika, mom of Anouk who was born with anencephaly)

 

When we were told Sidney had a form of potentially lethal dwarfism, I researched the various conditions that could cause it. Some had very obvious defects: club foot, cleft lip, bulgy eyes and forehead, a bloated and swollen body, misshapen limbs, and other very visible and distressing problems. Could I look past the abnormalities and still love my child?  This must be one of those unspoken insecurities in many, if not all, parents--can they look at a child, one who looks like people they have pitied or felt revulsion or disinterest toward, and love them because they are their child?  I went online and looked for pictures of babies with the problems mine might have. Some of the defects were horrifying at first. But if I kept looking, then after a moment or two, there was just a baby there, and I found my heart was touched. I knew that I COULD love my child.  After all, I love the child whom I feel inside me; it is only her exterior I do not yet know. (Laura, mom of Sidney who was born with a lethal form of dwarfism)

 

HOPE

 

You may feel convinced that your baby is going to be fine.

 

One night Phil came home from work and declared, “Honey, we are going to set up the bassinet and get ready for Maria to come home.  If we believe that she will be healed, then God will heal her.” I had already made funeral arrangements, but we decided to concentrate on praying for a miracle.   I believed that Maria was going to be perfectly normal at birth.  “I tell you solemnly, whatever you ask for in prayer, believe that you have received it, and it will be yours, says the Lord” (Mk 11:23,24).  I confidently clung on to these words.  I typed up a novena to Blessed Margaret of Castello, a woman who was cast out by her parents for her severe deformities, and sent it to everyone I know.  I asked that they pray it for 9 days and if they would like to begin it again, all the better.  I also requested that they please make copies to pass along to others.  We began receiving cards and letters from people we did not know, saying that they were praying for us and for little Maria.  This child had hundreds upon hundreds of people on their knees.  Maria died in utero about 4 p.m. and was born four hours later on December 21, 1995.  Maria had spina bifida and a hole the size of my palm in her back.  She was also bent at her hands and feet.  She resembled the crucified Christ – the One Who came and gave His life for us.  I was holding in my arms one who gave of her life for others.  How privileged I was to be her mother!  Maria lived a perfect life.  She existed nine months in her mother's womb and went directly to her Mother and Father in Heaven.  She never felt pain or sorrow.  She never shed a tear, never had to experience a grueling death.  She only knew love, warmth, comfort and peace. (Terri, Maria D.'s mom)

 

Maria's parents believed that Maria would be "perfectly normal." But she was not. Does God not answer prayer?  Or does He sometimes give a different answer than the one prayed for?.   

 

Journeying with a child with multiple disabilities is a life-prayer.  We delight in the silent milestones and learn to take little steps and to delight in them. It is not the apparent, transitory successes that mark the validity of our prayer, but how faithful we are to the journey. And the journey is worth taking--worth embracing—worth living for a life-time. My son Christopher had contracted beta-strep in my womb.  Deflated lungs, infection, sepsis, and five weeks in a neonatal facility on 100% oxygen would eventually leave him mentally retarded and crippled for life.  I had toxemia and was hospitalized 11 days prior to his birth and I had been on some pretty potent anti-depressants during pregnancy.  And now God was asking me to trust him and to take care of this child. I had been blessed by a very supportive husband, but he worked 16 hours a day. And there was so much uncertainty.  But God was merciful and loving. He showed us day by day the path we should take. We had to be willing to surrender Christopher's fate to the loving Creator.. This child taught us dear lessons about suffering and resilience that have taken us through difficult family times and renewed our love for one another. He would never offend God—he was a living saint. He rarely complained of his disabilities trusting in God to give him a new back, brain, and legs when “we came back to life again” on the Last Day.  I have tried to grow in patience with well-intentioned others who saw me carrying a cross, that I knew was sheer blessing. Christopher was that blessing beyond blessings and I could never live without that beatitude in my life or that source of virtue. Amen! (Mary, Christopher's mom)

 

WHERE IS GOD?

 

Not every parent believes in God.  If you do, you may be angry with God.  Tell God your feelings or write God a letter.   Seek guidance in your faith.

 

One morning I read the following verse:  "For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: 'Death has been swallowed up in victory. 'Where, O death is your victory? Where, O death is your sting?'"(I Corinthians 15:53-55)  Because I believe these words, I will be able to face the following months confidently. It is not the expectation of a miracle which helps me to endure everything, but the assurance of the baby’s resurrection and eternal life. What are eighty years of life (if she would live as long as an average person) compared to eternity? (Monika, mom of Anouk who was born with anencephaly)

 

Why did this happen?  No one can answer that question.  But you are asking it because your child's condition seems unfair, even wrong.  Yet the strange and wonderful thing about "bad" is that it often brings about "good" that would never have otherwise happened.

 

Megan and Kate are much, much better people because of their sister Kelsey. They are nice to kids in school, reaching out to people.  Kelsey has really enriched their lives and my entire family and Jack's entire family--they recognize that their lives have totally changed because of Kelsey.   She has touched so many people's lives.  There was a guy at church whom we didn't know who came up to us a few years ago  with this huge Easter basket and  he said, "I just want to tell you, Kelsey, that I come to church every Sunday and I see you with your family.  I see you looking up at the lights and talking to your family. You helped me get through this terribly difficult year.  I wanted to get you this Easter basket."  I was amazed that here was somebody sitting across the church from us that I didn't even know. Kelsey was an inspiration to him.  There was a woman in church who introduced her daughter who had disabilities Her daughter was in her fifties and her mother was in her seventies.  The mother came up to us after church and said, "I wanted you to meet my daughter. I've never brought my daughter to church before, but I've been watching you for a long time and I saw that people were accepting your daughter and that gave me the strength to bring my daughter to church."  Now I see her regularly there. There was another mother with a Down syndrome daughter who is probably in her thirties.  The mother brought her daughter to church regularly.  She saw Kelsey going up with the Confirmation students and she said to me after Mass, "Kelsey can make her Confirmation?"   I said, "Of course."  She said, "My daughter never did."  I said, "Is that something you think she would like to do?" And she said, "Oh, definitely."  So we got her hooked up so she made her Confirmation along with Kelsey.  All those years ago, it wasn't something people were doing.  But now they see Kelsey and they say, "Why not?"  (Chylene, mom of Kelsey who was born with CMTC syndrome)

 

DISABILITY:  NATURAL PART OF LIFE

 

Being pregnant with a child with a serious difficulty forces you to look at how you think.

 

"The beginning of successful lives for children is our unconditional belief in them and their potential for success.  For many parents, this belief is often conditional, based on conventional wisdom and the system.  For example, a parent may think a child can only be successful if or when he learns to walk, talk, take care of himself, or whatever.  Or we may think success will only come when or if we find the appropriate treatment for her condition (medication, surgery, cure, or whatever).

 

"When we believe our children's success is dependent on external remedies, we're delivering our children's lives and their futures into the hands of a society that will continue to marginalize them because of their perceived imperfections and deficits.  In addition, we're preparing for failure. For the "if" or the "when" may never happen. . . .

 

"What does it mean to unconditionally believe in your child and his future?  It means that, right now, regardless of your child's label or the severity of his disability, you believe he will be successful and will live the life of his dreams.  . . ..Many of us have a generalized attitude that, "I'll believe it when I see it."  But when it comes to our children, we must adopt the attitude, "I'll see it when I believe it."[2]

 

"When we accept disability as natural, we think differently and behave differently. As parents, we begin to treat our children differently.  We don't see them as a collection of body parts that need improvement; we see them, sometimes for the first time, as whole beings.  This causes us to rethink what's really important."[3]

 

Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society. -- The Developmental Disabilities Assistance and Bill of Rights Act

 

Your child may be very seriously compromised.  What abilities might he or she have?

 

·         The ability to elicit compassion

·         A strong will to live and succeed

·         A perpetual innocence

·         The ability to make others stop taking life for granted

·         Peace of body and spirit

·         The gift of overcoming great obstacles

·         The grace to bring families and friends together in support of the parents

·         The talent of eliciting totally selfless love

 

Parenting a child with difficulties is a journey and an adventure, mostly mundane, frequently jarring, sometimes sad, and occasionally mystical.  All such journeys begin with a dream.  And so does this one.

 

THE DREAM CHILD

 

Every parent has dreams.  We might imagine that our child will become a great missionary, doctor, lawyer, parent, sports figure, journalist, educator, author, manager, entrepreneur, or cook.  However, the child may have entirely different dreams, talents, and interests.  Parents have to modify their hopes for their children, and you are a parent.  You need to grieve the loss of your dreams. 

 

These are the children that mothers do not "dream" about, yet these are their greatest gifts, beyond what we could ever dream. These are the children who will transform many lives. (Doreen, mom of Gianna who was born with Trisomy 13)

 

The child of your dreams is not be the child you've conceived.  However, the child you conceived knows nothing about your dreams.  She does not feel hopeless, disabled, or incapable.  Nor does she know anything about diagnoses or predictions.  She's happily tumbling and kicking, achieving what is normal for her and developing her unique abilities. 

 

The key to good parenting is to crawl inside your children's skin and see the world through your children's eyes.  Then you will strive to have their dreams, not yours, come true.  Your unborn child has goals.  They are to be warm, comfortable, and playful.  When your child is born, the goals will change to being held, caressed, fed, changed, burped, and walked with.  If your child lives, his goals will change.  He will have certain dreams when he is ready.  She will reach certain milestones on her own schedule.  Help your child to become all that he or she can become.  That is the goal, the journey, and the gift.

 

I knew from the minute I saw her. And what once would have devastated me somehow changed me. This was MY baby, not some "retarded child" I was seeing on tv.  I was not anguished about MY child with Down syndrome, but about the many children with Down syndrome who had mysteriously come through my life prior to her, small messengers whose presence I had never acknowledged. I was ashamed. I loved this baby without reservation.  I was already learning about my own prejudices. I knew I had better start learning, and fast. I told everyone who would listen about the Down syndrome.  I was so proud of this child, I actually surprised myself.  She attends a regular preschool program, potty trained before she was 3, and is a very independent little kid. She is funny and spirited, stubborn and witty. She whistles little songs all day long. She idolizes her big brother. She loves to draw, and at 3 can put all the details into a drawing of a face.  She is rather amazing, but then she is mine so I see her with a touch of prejudice. (Michelle, mom of Ciarra who was born with Down syndrome)

 

DISGUISED TREASURE

 

Adverse prenatal diagnosis has changed your life.  You are on a journey on which many have walked before you and many will walk after.  Each journey is a bit different, but all are alike in one way.  If you follow your little one's lead, you will come to recognize your child's unique abilities.  You will know the gift of your child. I have not been able to find one mother who continued her pregnancy in the face of adverse prenatal diagnosis and who regretted her decision. 

 

When Nathan was first diagnosed the blow was incredible.  Because this is a fatal disease, there was that aspect to deal with, along with the fact that he would not be able to walk or talk or go through any of the developmental milestones other children do. I was in what felt like a gray fog for several months. I just went through the motions of life. I was very sleep deprived because Nathan wasn’t sleeping, plus I was grieving for my son. I do remember one day suddenly realizing time was ticking by. I wasn’t enjoying my sweet baby, nor Emilie or my husband—I was just marking time. This isn’t how I wanted to live my life, nor how I wanted to spend the precious little time Nathan probably had on earth. I wanted to enjoy every moment. So one day I just woke up and started living life again. I figured the thing to do was to fight his many illnesses and make the most of whatever time we had, giving him absolutely the best life we could. (Jennifer, mom of Nathan who was born with Menke's Disease)

 

Remember Aladdin's lamp, the magic beans, the frog prince?  Aladdin was about to toss away an old lamp because it was so tarnished and bent, but he rubbed it and out popped a magic genie.  Jack traded the family cow for a handful of beans that his mom threw out the window in disgust.  Overnight the beans grew into a bean stalk that reached to a giant's treasure trove above the clouds. The frog prince sought a princess to kiss him so that he could turn back into a handsome man.  What do these fairy tales have to do with your baby?  They remind us that the apparently worthless and ugly is the avenue to untold value. 

 

Your baby is not a label, a diagnosis, a syndrome, or a condition.  He is a magic lamp, an enchanted bean, a frog prince. 

 

Our world came crashing down in a matter of minutes.  Our baby was no longer our baby, instead, in the medical community, she became a 'fetus with a fatal defect.'  (Christine, mom of Grace Ann who was born with Trisomy 18)

 

So how did I react when I heard the news of our son? Even though choosing to abort his life was never an option for me, I still had a choice to make: to see him as a burden, a problem, or to accept him already then as a gift. I cannot explain why, but at that crucial moment I knew that I would accept my son just as he was intended to be. I responded with the words, “We would welcome such a child.” I felt completely at peace, and in a sense almost honored at being given this child who would be truly “special.” (Edad, dad of Benjamin who was born with Down syndrome)

 

If you can view your child as a treasure in disguise, the time of waiting for your baby's birth will change from a time of dread to time of joy.  You will embrace the wonder of your child alive within you, and you will be able to face the future with hope. 

 

The decision to carry my Joyann to term was a process, honestly.  I knew that once she was out, if I changed my mind, there was no putting her back. I decided to go the natural way, let Joyann decide the day she would be born.  As the weeks flew by, I was really glad I had decided to carry Joyann to term. The women on the internet were so loving and helpful and understanding. I also read a lot, wanting to know everything I possibly could about anencephaly  Finally the day to meet Joyann arrived after nearly 5 months of waiting! (Jewell, mom of Joyann who was born with anencephaly)

 

My pregnancy was hard both emotionally and physically, but each kick from this little life showed me it was worth it. I felt this was the only time I was going to have with this child so I was going to enjoy it as much as possible. (Sue, mom of Lucas Adam who was born with anencephaly)

 

WHO TO TELL

 

We live with our choices.  Women who end their pregnancies find that those who urged them to do so are generally nowhere to be found support-wise months and years later.   On the other hand, those who bring their babies to term have the support of family and friends, through the years.   

 

We decided to tell everyone at church and at work, thinking there would be less awkwardness if we were open about it. We did it mainly via email and by telling a few people whom we asked to tell others. That let everyone know. We also told people not to be afraid to talk to us. The response was overwhelming. The people who shared hugs, tears, words of support, and prayers were invaluable to us. For the most part, we were able to talk with everyone very matter of factly.  Many people commented about how “strong” we were. We knew that it was because of all the prayers on our behalf and the peace, comfort, and strength provided by God. We  trusted that God  would comfort us and help us through this so that we could some day join our daughter in heaven. (Mindy, mom of Abigail who was born with Trisomy 18)

 

Choose carefully who you will spend time with.  You deserve supportive friends.

 

Through the mother’s ministry at my church, I discovered the  friendship possible between women who love the Lord.  We truly are sisters in Him. My fourth child was conceived the same month that the mother’s ministry began. I was twenty weeks into my daughter’s pregnancy when the doctors informed us that Clare Catherine had a severe birth defect, which would make it impossible for her to survive for more than a few minutes outside of my womb.  My husband and I were devastated with grief.  What would I say to people when they asked about my baby?  How would she be received?  Would people begin to avoid me, or avoid mentioning my pregnancy?  I was afraid that I would end up alone in my suffering.  But I decided that I would speak openly about her, that I would rejoice in her as a beloved child of God, and that I would make the most of the brief time I had been given to cherish her.  What a miracle awaited us!  My sisters in Christ fell in love with Clare, too!  They entered fully with me into the joy of life and the pain of death.  They would pat my belly and ask, “How’s our Clare today?” with smiles on their faces and tears in their eyes.  They even organized a baby shower to celebrate Clare’s life, and I have never received more heartfelt gifts.  My sister SueAnn gave Clare a velvet gown with matching dress shoes, saying, “Every girl should have a party dress.”  Jeannine and Therese found a haloed silver dove to represent her patron saint, Clare of Assisi.  I received many picture frames and photo albums and from Ann, a little baby pink rosary that Clare later held at her funeral.  Mirna wrapped up a big box of diapers, saying, “I believe in miracles, and I’m praying for one for you.”  (Elizabeth, mom of Clare Catherine who was born with anencephaly)


 

 

[1] In this book, either the male or female pronoun will be used at random, with the understanding that either sex child is meant.

 

[2] Kathie Snow.  Disability Is Natural:  Woodland Park, Colorado:  BraveHeart Press, 2001, p.  229.

 

[3] Ibid., p. 231.