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For it is in giving that we receive.  -- Francis of Assisi


Ready to Begin


Michelle and I were walking,

In amongst the trees, the birds, the animals

And the grasses swaying in the wind.


I felt you so close, Stephanie.

I've always felt you in nature.

But this time it was different.

I felt you intertwined with me.


I finally felt some of the peace,

That I was told would come again.

For the FIRST time I could imagine

The next baby.

You weren't being forgotten,

I could feel you knew that.

I felt so close to you.


Michelle and I discussed bringing the next baby

To our favorite spot,

All cuddled in a baby sling.


That was last week.

My health has returned thanks to natural remedied.

I still feel that small amount of inner peace.

I still feel your presence very close to me.


I guess this means one thing, my sweet baby.

I am ready to begin.

Ready to begin the process of starting a new life.

Thank you, Stephanie for staying by your Mummy's side.

You are helping me to begin again.

You, your big sister Michelle, and your Daddy.


-- Bernadette Zambri, May 17, 1993[1]


Whether your child lives briefly or has a longer life, you, by giving birth to your child, will have given your child the gift of his or her life and of your love.  Memories will surround these gifts.




You will face many anniversaries.  Anniversaries are times to write a letter to your child or to create a poem or memento, to plant a tree, or to make a visit to someone who might be lonely.  Particularly if the anniversary is painful, allow yourself the full range of emotions but also work to bring good out of the pain.  In this way, healing will come.



Gianna Christe Mariolina


Our baby Gianna was born,

On December 29, 2003

Our hearts were naturally torn,

When she died at p.m. 6:03.


But we knew when she closed her eyes,

She would open them up yet again;

To be happy forever in paradise,

Which has been hoped for by women and men.


On that night my family and I,

Let our hearts and our tears be shed.

Our smiles were watery, few eyes were dry,

When we remembered the thought she was dead.


But not dead, do you see?

She is alive and awake.

She is happier than you and me.

But when I think of her my heart will still ache.


I know that my family has a private saint.

We can ask her to help us in troubles.

We can pray to her while we work, paint,

Rake, sing, and even when we're blowing Bubbles.


by Alayna Nagurny (age 11) on the anniversary of her sister Gianna's death (12/29/04) (Gianna was born with Trisomy 13 and holoprosencephaly)


One anniversary will be the date of the prenatal test which revealed your child's condition.  You may relive all the pain and confusion of that time.  Look at the ultrasound photos and any other mementos you may have.  If your child has died, visit his grave. If your child is alive, do something special with her.  If your child is living elsewhere, visit if you can, or make a phone call to the adoptive parents or institution.  Give a gift in your child's memory.  Or host a party or fund raiser for those in need.  Create positive memories for what you may have viewed as the worst day of your life.


Other anniversaries will be the date of your child's death, or surgery dates, birth dates, or dates associated with other parenting choices.  Holidays will bring their own memories.  Mothers' and Fathers' Day can be especially difficult if your baby has died.  Remember that you are always a parent and celebrate your special day.


Don't be surprised if strong emotions surface at apparently insignificant things.  Certain weather patterns, sights, sounds, smells, places, and even everyday chores can trigger memories.  Embrace the emotions for as long as they last.   Healing comes through these times.


You may feel pain over what might have been but was not.  This does not mean that you are a bad parent who does not love your child.  It means you are a normal parent who wants your child to have a perfect, happy, painless existence.  All parents come to realize that this desire is an illusion.  Whatever children we have, we move forward in love despite the imperfections and the pain.




Parents often want additional children, but future pregnancies can be scary.  If your child died, will a future pregnancy cause you to cherish that child less?  Probably not.


He was my pride and my joy, and he changed my life forever.  He has deepened my faith, given me hope, and left me with such wonderful memories.  Since then, I have had two more children, a boy and a girl, who are both in perfect health.  But I will not ever forget my beautiful, precious Tanner.  (Renee, mom of Tanner who was born with Posterior Urethral Valves)


Will you have another child with special needs?  Will having a "normal" child make me love less the child I have now? Is it fair to our child to want another?  Will we have time to care for our child with a disability if we have another baby?


In June, Celine became a big sister to Genevieve. Having a "baby" to focus on has helped our family to move beyond Celine's heart defects.  (Monica, mom of Celine who was born with hypo-plastic right heart syndrome)


But when I became pregnant with our 3rd child, Matthew, I was seriously frightened.  We had prenatal testing done.  We didn't get the results until about 3 months before he was born.  Not that we would have ever considered abortion, but we wanted to know so we would be prepared and could start treating right at birth if he was sick. He was born perfectly healthy, praise the Lord!  (Jennifer, mom of Nathan who was born with Menke's Disease)


Our children were really young.  I didn't tell them that the baby was going to die, and, when Andrew did, they were really sad.  I got pregnant quickly after that and my children were very concerned and came for the birth of the next baby.  Andrew's life and death are part of the life cycle, maybe not a usual part, but it happens.  (Emily, mom of Andrew who was born with Trisomy 13)


You might find yourself mixing up your children's names, perhaps even calling a living child by the name of one who died.  This is a positive sign that you remember and love all your children and also that you are a typical parent.


Try to relax and enjoy all your children.  Your subsequent baby, born without a disability, is not going to be the "perfect" child.  You may actually find it easier to raise your special needs child! 


Some parents expand their families through adoption, and often of children with special needs.


When Karlee, who was born with spina bifida, was two, her baby brother Alec was born.  He's a very normal, typical kid--no birth defects. Karlee loved little Alec.  Then, in June of 1999, Karlee died in her sleep.  We still don't know what really happened.  We were in the middle of building a new house with handicapped accessibility. We decided to go ahead with our plans and created a completely accessible house.  So what to do with it and our knowledge and experience with a handicapped child?? I tried daycare for handicapped children.   Then one night I found a website which had  information on all the special needs children in the U.S. that are available for adoption. I found a sweet little girl named Chelsey.  She had cerebral palsy.  Her bio said, Chelsey needs a family.  Can you be her family? I said sure! Yes!   Nine months later we were paper ready.  Chelsey had already been adopted. SUCH disappointment. But the adoption people knew we were paper ready and .contacted us in January. A young lady .was pregnant with a baby diagnosed with brittle bone disease. They asked if we were interested. I again turned to the internet for information.  I found a support group for parents of children with brittle bone disease and asked these parents what they would do in my shoes. A lady in the group had brittle bone disease AND worked for an adoption group.   She said to me,"If you decide not to take the brittle bone baby, I am representing a child in Europe, 3 years old, who has spina bifida." The next day she sent me Benal's picture. Two days later she sent me a video.  Ttwo WEEKS later we were  visiting her!    She was tiny, darling with big brown eyes and dehydrated. She was a charmer! We fell in love instantly. Benal's lesion on her back had not even been repaired and her hydrocephalus was left untreated. She basically is paralyzed from the hips down and actually does not have hip sockets. Her feet are deformed. When we met her she was non verbal - wouldn't say a word. She also gagged on anything not pureed.  We returned home to start the mountain of paperwork.  Five months later we got to travel again to bring her home.   Our facilitators were preparing to leave the orphanage, but we insisted that we get to see (another) child with spina bifida.   Our attorney told us this is the room where they keep the most medically affected children (the to-die kidding).   And then we saw Nikki. She was left in a very small crib in a stifling hot room. No toys, no stimulation at all. She screamed when she saw us. They told us they only took her out of the crib once a day to feed and change her.   I insisted that they take her out and let me hold her.  Her resemblance to my Angel Karlee Rose was frightening. It took all my control to not start sobbing. She FELT like Karlee, heavy with low muscle tone. There was no way in the world we could leave her there. We insisted we talk with the orphanage director. Our attorney said we should take Benal home and think about this. We said NO WAY.  So. the director said she would consider us as a family for Nikki.  Nikki's adoption took a YEAR.  (Katie, mom of Karlee Rose, Nikki, and Benal who were born with spina bifida)




Your child will change you.


When Gianna was first diagnosed, I truly believed that she was a great gift. No one has had as much impact on my life as she has. I pray everyday that I will honor her life by trying to bring some good into this world. I used to be content to move in my own circles of close friends and family. Now, when God shows me a need, and I feel the impulse to respond, I don't hesitate to reach out. My heart yearns to do what I can to help mothers who are in a similar situation that I was in. These babies are truly a gift from God and each holds a unique purpose; by saving her baby, a woman learns to love unconditionally and this may be the very path to her salvation.  (Doreen, mom of Gianna who was born with Trisomy 13)


Before Jonny's birth, I'd prepared announcements with a line from Elizabeth Barrett Browning: "God's gifts put man's best dreams to shame." I sent them proudly, adding a note about his extra chromosome and our great love for him.   He's been a gift I never would have thought to ask for, bringing lessons I never knew I needed to learn. The greatest surprise is this: Our life together has been less about my helping him reach his potential than about him helping me reach mine. (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, all of whom were born with Down syndrome)


You may find yourself helping others as a direct result of your child's birth. 


We had told our (European) attorney that if ever they found a child with hydrocephalus, we would pay for the surgery for the shunt. They established a foundation called Shunt For Life because of this.  While we were overseas adopting Nikki, the driver told us about an infant in Varna who needed a shunt. We gave him the cash, he drove back to Varna the next day, and little Vanya had successful surgery that week! She was one of a set of twins now available for adoption. My sister-in-law, Cindy was taking care of a women's mom during surgery. The women's name is Kay. Kay told Cindy that they were applying to adopt a little boy who was missing one eye. Cindy connected Kay and myself and we became instant friends.  They brought Josiah home from overseas.  They got him an artificial eye and he's doing fine. Our adoption agency contacted them again and told them about a set of twin girls available for adoption in Varna. They accepted the twins. Kay mentioned that one girl had a shunt.  I grabbed the phone and asked Kay, "Is her name Vanya????" "YES!!!!!!" Wow, what a true miracle! So months later they were able to bring the girls home. They are beautiful! And they renamed Vanya Mattea Rose. For my Karlee Rose whose spina bifida started us on a journey that continues to this day.  (Katie, mom of Karlee Rose, Nikki, and Benal, all of whom where born with spina bifida).

You will never know the extent on others of your child's influence. 


One doctor was amazed that a mother continued her pregnancy and gave birth to her daughter, knowing in advance that she would not survive more than a few days.  Only in later years, when the doctor came to know the loving power of God, did he realize that knowing this mother and her baby were a significant part of his faith journey.


One woman was working at a yard sale when a father, two kids in tow, came to pay for his items.  The older boy was carrying a small car and the younger one, in a stroller, was chewing on a rubber cartoon character.  As the woman took the money, she noticed that the child in the stroller had the characteristic features associated with Down syndrome.  When the little boy dropped his cartoon character and smiled up at the woman who picked it up for him, she had the distinct feeling that she was looking into the face of Jesus.


When a girl with limb deficiencies walked across the stage to receive her high school diploma, her class erupted into applause.  She didn't even know all the classmates who were cheering her, but they knew her and what she had overcome.


In 1982 my daughter, Karen, was born with Down syndrome and a severe heart defect. Less than six months later she died of complications of pneumonia. Karen taught me things no teacher ever did  --That life isn't fair - to anyone. That self-pity can be an incapacitating disease. That God is better at directing my life than I am. That there are more caring people in the world than I knew. That Down syndrome is an inadequate description of a person. That I am not "perfect" either, just human. That asking for help and support is not a sign of weakness. That every child is truly a gift from God. That joy and pain can be equally deep. That you can never lose when you love. That every crisis contains opportunity for growth. That sometimes the victory is in trying rather than succeeding. That every person has a special purpose in life.  That I needed to worry less and celebrate more. (Nancy, Karen's Mom)


Your child was never given to you for you alone.  Your child has a mission in life--to make the world a better place because he or she was in it.  Your mission is to see that it happens. 


Nick has a magnetic type personality and strong character that has compelled countless people to express to me personally how much my son has inspired them. Nick’s fifth grade teacher even had a special award presented to him for being such an outstanding young man. How proud can a mother possibly be of a son who has not achieved walking on the moon but who is a positive influence on the lives of others who have not faced the hardships he has undergone. (Ashley, mom of Nick who was born with spina bifida)


As life unfolds, day to day, with all its sorrows and joys, trials and successes, frustrations and achievements, the mission is achieved.  Go forward in faith, hope, and love.  The journey has just begun, and the journey itself is gift.


Looking into Nathan's eyes was like looking into the eyes of an angel.  It was like he could see into our souls. Quite a different experience than with our other children, even when they were babies. Nobody understands the blessings of children like this unless they have had the great gift of parenting or being close to them in some way. I will be grateful forever and forever. (Jennifer, mom of Nathan who was born with Menke's disease)



[1] Reprinted with permission from Morning Light:  Miscarriage, Stillbirth, and Early Infant Death from a Catholic Perspective, by Bernadette Zambri, Toronto, Ontario (Canada):  Morning Light Ministry, c/o Saint Mary's Church, 11 Peter St. South, Mississauga Ontario, Canada L5H 2G1, 1998, p. 36.

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