Be patient with everyone, but above all with yourself. -- Francis de Sales
I admire my brother Nathan.
The reason is because he is handicapped and still is happy, and never complains.
He has Menke's Kinky Hair Disease.
It is a very rare disease, and it is a very hard word.
He is five years old right now.
Another reason I love him is because he almost died a few weeks ago!
He is patient and tries hard.
He is happy, cute, has a cute giggle, and he doesn't cry very much.
He's very gentle.
He is always sick but doesn't complain.
He can't do very much.
He can't talk or walk, but he really enjoys watching me dance and play.
He smiles a lot and he loves me a lot.
He likes people to sing to him.
Inside he is like everybody else.
He teaches me to be brave.
I love him and admire him very much.
Emilie Elisabeth Saks, age 7 (spring, 1987, published in Focus on the Family Clubhouse Magazine, 1989. The assignment was to write about their most admired person in their lives.)
Many of us like to be in control. Receiving a serious prenatal diagnosis can make you feel powerless.
Shortly after we received our news (that our unborn child had Down syndrome), severe panic attacks began to interfere with my sleep at night. Soon, they would hit hard and strong during the day as well. These were due to my own personality type. I like to have things under control and, if they are not under control, I want to fix it. And this was something I couldn't control. (Nina, mom of Tess who was born with Down syndrome)
It's generally good to be in control, but sometimes we can't be. It's important to plan, yet all of us have lived through unexpected experiences and have had to make decisions based on emerging information. Some of what we anticipated never happened, and some of what we never anticipated did happen. Right now, you can only make an educated guess about some of the many questions concerning your baby. Take one day, even one moment, at a time. Try to enjoy your baby now. You will live through the future when it arrives.
Grace was the most helpless creation - she brought out the goodness of people. Grace provided an opportunity for many people to love unconditionally. People couldn't do enough for our family. The hospital bent over backwards for us. My friends and family continue to support and love us. Grace did more in 2 months than some people do in a lifetime. She was pure love, and she experienced pure love. I thank God he blessed us with her. She was worth it all. (Christine, mom of Grace Ann who was born with Trisomy 18)
THE IMMEDIATE CHOICES
Every parent who receives an adverse prenatal diagnosis faces the immediate choices of how they will view the situation. Some of these choices are:
· To fear the future or to go forward in confidence.
· To grieve for your imagined child or to love your actual child.
· To be overwhelmed by questions or to research answers.
· To give up in despair or to fight discouragement.
Some days I was so discouraged. After a day of depressing reading, I wondered what difference it would make anyway. But each time I considered giving up and not trying to help her live, I felt so dark and awful that I knew it was not what I needed to do. I believe this baby was sent to me because I WOULD fight. I think she came to our family because we could accept her completely, and love her regardless of her limitations or how short her time. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
· To see this diagnosis as the end of your world or to see it as the beginning of a new world.
· To consider this pregnancy a disaster or an opportunity.
· To view your child as a genetic blunder or as a serendipitous gift.
· To focus on the pain in each day or to seize the joy.
First I didn't believe that our child had a fatal condition. I was always optimistic that there had been a big mistake, but I was not getting any bigger and he was not moving much. Then I went through a brief period of thinking, "What's the point? He's going to die anyway." Then I realized that if this baby wasn't going to live, this was my only chance to be his mom. I didn't know how much longer we had. I can look back and say I did everything to protect and nurture him the only way I could. (Sandy, mom of Casey who was born with Trisomy 18)
· To pinpoint the suffering or to transform the suffering into triumph
· To close in on yourself or to reach out to others who can help.
· To deny your feelings or to acknowledge them.
· To cave in to negativity or to shoulder through it to trust.
We had so little time left to enjoy her presence, but in that time, she taught us many silent lessons on the nature of love. During those last months that I carried Clare, my life was interwoven with intense joys and sorrows. Our Lord was so close that I expected to meet Him around every corner, and in fact I did, in the eyes and the words and the actions of the faithful people He placed in my path. (Elizabeth, mom of Clare Catherine who was born with anencephaly)
· To cling to your world or to enter your child's world.
· To do what others think best or to let your child show you what's best for him.
· To isolate your child or to fully integrate him or her into society.
· To see life with your child as a dead end or as an opportunity.
The decision on whether to carry or terminate was a hell no parent should have to go through. I have never believed in abortion, but my first thought was, "How can I get out of this?" I did think about terminating. Who really doesn't? I think I was in shock and am now glad I took time to think this decision through. I asked God for a sign. He literally gave me one. I drove past a church that always has a sign with a daily message. This day it said, "Regret looks back. Faith looks up." I knew then that I had been fooling myself if I thought I could terminate. Only God can decide when a life ends. I felt like I would be killing one of my children. I would not do that to my other kids. I did not want to look back in regret. My husband felt the same way. My pregnancy was hard both emotionally and physically, but each kick from this little life showed me it was worth it. This was the only time I was going to have with this child so I was going to enjoy it as much as possible. I also decided that I could be angry or that I could continually feel sorry for myself, but what would it change? If I accepted God's plan, I would honour my child more than if I were an angry mess. Don't get me wrong-- there were days I had a hard time even getting out of bed, but when I didn't have the strength to go on, I prayed and God sent me His strength. (Sue, mom of Lucas Adam who was born with anencephaly)
The first choices will drain your energy and poison your spirit. The second ones will energize you. You may not be ready to fully embrace the second choices now. Aim toward them.
I am fully aware of the “cost” of raising such a child, in terms of illness, education, and family support. We have already frequented cardiology, gastroenterology and audiology departments of local hospitals. There have already been plenty of sleepless nights as we struggle to keep him gaining weight; and this is just the first three months. But I also know that such children and adults draw out of us optimism, creativity, and patience in a way no “normal” child can. Such true “children” offer a reminder that the value of our life is not measured by what we achieve but by how much we love. The future will bring many more challenges but we are confident that, as we accept the gift of his life, we will see how our lives are enriched. Benjamin is a person, unique, whole, to be loved, who will bring to us far more than we can ever give him. (Eldad, dad of Benjamin who was born with Down syndrome)
SUPPORT ONE ANOTHER
It is critical that those directly connected to the baby's life support one another.
At 15 weeks gestation, we found out that one of our twin babies had died. At 19 weeks gestation, our baby daughter Lucy was diagnosed with an omphalocele, where the intestines develop outside the body. We were advised to abort. We were told that our baby would either be a real "inconvenience", or worse, she would die minutes after death. We decided that we would take her whatever way she came, and would not regret it. This is a poem I wrote to her after she was born.
As I sit at your bedside today, you, my beautiful 5 day old daughter, I think of your father.
I THINK OF YOUR FATHER, Lucy, the man who held my hand tightly as we saw your tiny, twinkling, blinking heart on the ultrasound screen next to the very small, still body of your twin.
I THINK OF YOUR FATHER, Lucy, the man who let me sob on his shoulder after the doctor told us you had a fatal birth defect. I looked outside her office on that gray day, my tears mixing with your father's as our dreams for you fell apart.
I THINK OF YOUR FATHER, Lucy, the man who refused to end the life of a child he may hold for only a few minutes after birth, as she took her last breaths.
I THINK OF YOUR FATHER, Lucy, the man who cried tears of joy as you entered this world, sputtering and coughing, the heavens opening up and shining on the 3 of us as you were bundled up and carted away for surgery.
I THINK OF YOUR FATHER, Lucy, the man who called me with a quavering voice, telling me you had made it through perfectly. We cried together.
I THINK OF YOUR FATHER, Lucy, a man who knows what is right and does it, who stands up against the evils in this world, who leans on his faith in God instead of the world's knowledge to give him what he needs to be the rock for his little family.
So, my little Lucy, when you don't know what to do, when the world is telling you one thing and your convictions tell you another, just do what I do. Think of your father. (Rachel, mom of Lucy who was born with an omphalocele which was surgically corrected)
Often mothers and fathers have different reactions to the pregnancy.
My husband felt more out of control. It is hard for men to see their wives suffering--they want to fix it but they can't. My husband could be detached from the pregnancy, even forget it for a few hours, but I carried our dying son around 24 hours a day. It was hard for my husband to watch me go through that. Men get over the pregnancy differently, too. It's not as intense for them. The hormones that get you ready physically and emotionally for the baby are still there even if the baby dies. The day of Casey's funeral my milk came in. All those chemicals get you ready for the job to do and you don't have it to do. It's not the same for the husband. The baby does not really seem real to them until he or she is born. (Sandy, mom of Casey who was born with Trisomy 18)
Talk to your spouse about what you are feeling.
Sidney's problems were so big, and so scary, my husband did not want to have to think about it. When I talked to him about her, he sort of tuned out and went away! One morning I told him that I felt like I had eight kids, and he had seven. I pointed out that he never spoke of her, had never said her name, and let him know how lonely and isolated I felt. At the time I was battling doctors to get them to acknowledge that she had value, and I needed his support, and told him so. He did try after that. He began making an effort, and it got easier for him to face things as he took the time to make jokes about my stomach, or to pat it as I went past. I have even heard him refer to her by name. (Laura, mom of Sidney who was born with a lethal form of dwarfism)
One way to foster communication is by writing letters to one another. Each parent should tell the other the troubling things the other does or does not do. Set a date to be alone for several hours. On the day of the date, each buy a rose. Exchange roses and letters. Talk about the content of the letters and how to solve the problems shared.
Continue the communication. Have a date with one another weekly. No exceptions. Continue this practice no matter what parenting option you choose and whether or not your baby lives.
Your baby may not be expected to live long. Your main job will be to parent your child for as long as life remains. Your older children may have input on how they'd like their brother or sister parented.
The doctors and nurses tried to convince us to put Joey into a hospice--to not take him home but to visit him there. My husband thought maybe that was best for the other kids although I wanted to take Joey home. Our 15 year old daughter Nora said, "You have to take him home. He's our brother and he needs us. We need to know him." So my husband said, "Let's go get him." (Erin, mom of Joey who was born with Trisomy 18)
However, your baby may not have an immediately fatal condition. Your child may live for months, years, or maybe a life time. Later chapters in this booklet will discuss long range parenting. However, not everyone feels emotionally, physically, or spiritually qualified to parent a child with disabilities. Before your baby is born, you may want to explore alternate parenting choices.
Respite care means having others care for your child part of the day, either in your house or elsewhere. Check with community agencies regarding respite care.
Use temporary foster care if you are trying to decide whether or not to place your child for adoption or choose institutional care. Your government office can refer you to foster care services.
Parents have many reactions to adoption.
I could never give up my child. You are not giving up your child. You are making an adoption plan for a child whom you feel you cannot raise.
We conceived our child so it's our job to parent. Maybe and maybe not. Maybe you conceived this child so that someone else could parent.
Why would God have given us this baby if not to raise? We learn many things from our pregnancies and from all our experiences. There may be other reasons that God gave you this child.
I would always wonder what happened to our child. You can make an open adoption plan, keep in touch with the adoptive family, and know.
We have a little adopted daughter Hope who has Down syndrome just like our birth daughter Tess. Her birth mom's first reaction was, "I have to have an abortion," and she didn't really want to. Someone told her, "You don't have to have an abortion. Let me point you in the direction of adoption." Adoption is a greater option than we ever thought. We include Hope's birthparents in our lives. We were in contact the first year and we asked if her birth parents wanted to participate in Hope's first birthday. We went to their home town, and they invited friends and family, all who had given the birthmom a baby shower with gifts for the adoptive family. They were able to bring closure to their own grief. We are making plans for her second birthday and will have those folks attend also. The birthmother is now married. She and I had built a rapport with one another because no other two human beings are linked like we are because of this baby. The Lord has put it on our hearts to be as open as we are. (Nina, mom of Tess and Hope, both of whom were born with Down syndrome)
What would others say if we made an adoption plan? What does it matter? No matter what our choices, someone is going to disagree.
What would I say to others who ask about our baby? How about, "Our baby is happy with his (her) adoptive family and we are delighted he (she) is there, too."
How could I answer the question "How could you do such a thing?" How about, "Every parent does what is best for their child. This was best for ours."
How would I handle the guilt that someone else is willing to parent my child but I'm not? By not taking on any guilt. Everyone one has different abilities and talents. You are to be commended for admitting that you are not emotionally and/or and physically capable of caring for your baby. Adoption puts the baby first. You deserve our praise.
What will I say to our other children? How about the truth? Explain in terms your other children will understand why you made an adoption plan for their brother or sister. Assure them that this plan applied to this baby because it was best for him or her. Their staying with mom and dad is best for them.
What will I say if someone asks how many children we have? Say ____ with us and ____ being parented by others. Thanks for asking. How about you?
How will I deal with what others may think of us? Try not to second guess folks. For every person who thinks negatively of you, more will think positively. No one can please everyone. When you make a decision that is right for you and your child, you have nothing to justify and every reason to be proud.
Many families wish to adopt children with special needs. Agencies which specialize in special needs adoptions can put you in touch with adoptive parents. Talk to some of these families. You may understand better how they differ from yourself in parenting style. You can imagine how such parents will be a good choice for your child.
We visited 3 orphanages in 3 different towns (in Europe) to take pictures and get information about other children with disabilities and medical problems for our adoption agency. We visited a little girl who also has spina bifida. She was doing great and was up walking and talking. (The adoption agency) was able, later, to find a family for her and she is now in Oklahoma! We also visited the very large and well funded orphanage for young children. Sandy (from our adoption agency) had sent me a picture of a little girl there (18 months at the time) who didn't look very good. Her eyes gazed off in the picture and her head was huge and funny shaped. We had just a funny feeling about her. She also was diagnosed with spina bifida. Before getting to see her, we spent time with other children, one with Down syndrome, one who is blind and a few others - all are now in the U.S.! (Katie, mom of Karlee Rose, Benal and Nikki, all of whom were born with spina bifida)
Consult local agencies and private lawyers that handle adoption. Discern whether private adoption with an attorney or adoption via a certified adoption agency will work better for you. Adoption agencies provide counseling for birth and adoptive parents while lawyers generally do not, but a lawyer may be more willing to design a unique, tailor made adoption plan that will work for you. According to Dr. Byron C. Calhoun, MD, NATHHAN/CHASK (one agency that works for the adoption of hard to place infants and children) has "over 300 families in the United States who will adopt a child no matter what the problem or life expectancy." (letter from Dr. Byron Calhoun to Mrs. Kathleen M. Morgan, 15 March 2005)
Jonathan was followed a year later by our daughter Madeleine. Then by Jesse, Daniel and Justin, three baby boys with Down syndrome we adopted. When people express surprise that with our large family we would take on more with special needs, I tell them, "When we found out what a treasure we had in Jonny, we decided we wanted more." (Barbara, mom of Jonathan, Jesse, Daniel, and Justin, who were born with Down syndrome)
Sometimes someone you know will volunteer to parent or adopt your child. If you would never consider this, gently let the person know, being sure to thank them. If you would consider it, work with the potential adoptive parent and an adoption agency which will provide legal guidelines and counseling.
If you do consider adoption for your child, think through the following questions before your baby is born:
Do you want to hold and get to know your baby?
Do you want to breastfeed?
Do you want a voice in selecting the adoptive parents?
How much contact do you want with the adoptive parents after the adoption is finalized?
Do you want to take the baby home from the hospital?
If you don't take the baby home, where does he or she go until being adopted?
What will temporary foster care be like for your child?
What can be done to have your baby go from the hospital directly to the adoptive family?
At one time, institutional care was the norm for children born with certain difficulties. Today it is still an option.
Many fine homes for children with difficulties exist. Many of these are managed by religious groups. Visit some homes and see how the children are cared for. Learn how you can be part of the team that cares for your child. Feel comfortable with the home before selecting it. Not every institution is equal in the services and love it provides.
Some parents parent the child at first and choose institutional care later. The reasons for choosing institutional care are many. Some are:
· The parents are getting too old.
· The child is getting too large.
· The child's needs are increasingly difficult to manage.
· Parents feel they are unable to parent their other children well.
· Parents want the child in a safe setting as parents face their own demise and deaths.
Others may ask many of the same questions asked of adoptive parents. Refer to the above section on adoption on some ways to answer these.
You may wish to have someone else temporarily parent your child as a legal guardian while you finalize a parenting plan. A lawyer can advise.
Be at peace with your parenting decision. If you keep changing your mind, wait. Temporary foster care ore guardianship, or parenting your child yourself while you discern, can buy you time. Only when you feel comfortable with a choice for two to three months ought you act on it.
No matter what you decide, someone is going to disagree. Accept that this will happen and ignore it. Your decision will be right for you. Be at peace about it.
If you decide on an alternate parenting option, writing a letter to family, friends, and coworkers can help explain your choice and give others an idea of how to respond. The adoption agency or institution can assist you in composing such a letter.
A sample letter might read:
We cherish your love and support. Therefore we'd like to share with you our parenting plan for little (baby's name) who was recently born with (name of disability). After much discussion, counseling, and honest soul searching, we have realized that we did the best we could in bringing (baby's name) to birth. Now we want to do the best for him (her) for the rest of his (her) life. Realizing our own limits, we've lovingly chosen (an adoptive family, name of institution, or whatever plan was chosen) to parent (baby's name). We are delighted that he (she) will have the care that we just would not be able to provide.
You may wonder if you ought to mention our baby around us. Yes, of course! We love (baby's name) and he (she) will always be ours. Please wish us well and (baby's name), too.
We appreciate your accepting our choice and allowing us our privacy regarding the details.
Thanks for understanding.
You will experience some sense of grief when you choose an alternate parenting plan. The grief comes from several sources--you will miss your child; you may feel guilty for not parenting yourself; you may grieve the child you wanted to bear. You may also grieve for a changed notion of yourself as parent. Talk over your feelings with someone you can trust.
Don't allow Mothers' Day and Fathers' Day to be difficult. You made the best choice for your child. Celebrate these days in some way. Other holidays such as Christmas, Easter, Passover, Hanukkah can also be difficult. Send your child a gift on those days or, if you made a closed adoption plan, send a gift in your child's memory to a shelter or children's hospital.
 Simons, Robin. After the Tears: Parents talk about raising a child with a diffability. Denver, Colorado: The Children's Museum of Denver, Inc., 1985, p. 28.