The Facts and Figures

What we are doing

Following our Shepard!  We are called by our Lord and Savior to adopt and we know this through signs and wonders going back for years in our lives.  We only recently recognized that God was calling us to step out in faith at this time and pursue the adoption of a child with special needs in Eastern Europe.  The call was that specific, and for that we are grateful. 

About our child

“Maeve” (a code name given to her on the Reece’s Rainbow website) is approximately six months old and has Down Syndrome.  We are not aware of any other medical concerns for her at this time, although that does not mean there are not or will not be any more, just as with any child.  There will be issues to work through that will stem from living in an orphanage and have nothing to do with DS.

Since this is an adoption of a child with special needs, the process will be quicker than adoptions of non-special needs children from other countries and should be completed by November at the latest.  We are praying for sooner, but will continue to seek the Lord about this and earnestly desire to be on His timetable not ours.

About Down Syndrome

Listed below are a few facts about DS in the United States from http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/.  You may be surprised by a few of these…I was!

·         Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

·         There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.

·         Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

·         There are more than 400,000 people living with Down syndrome in the United States.

·         Down syndrome occurs in people of all races and economic levels.

·         The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

·         People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

·         A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

·         Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.

·         People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.

·         All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

·         Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

Here are some Myths & Truths About Down Syndrome from the NADS website:  http://www.nads.org/nursing/myths-truths-DS.html

Myth: Down syndrome is a rare genetic disorder.

Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.

Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.

Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”

Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. The word, “retarded” is also no longer an acceptable word to use when referring to individuals with Down syndrome or any level of “disability.” It remains an inappropriate and hurtful word.

Myth: Most people with Down syndrome are institutionalized.

Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.

Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.

Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with a “typical” diploma, participate in post-secondary academic and college experiences and also receive college degrees.

Myth: Adults with Down syndrome are unemployable.

Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.

Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.

Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.

Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

***This information is about DS in America.

The call

I have read blog posts by other families addressing the concerns of some critical commenters in which they responded to the age old question about why they didn’t adopt one of the many orphans in the US.  First of all, to give a little perspective, asking this question would be like asking foreign missionaries why they didn’t stay in their home country and witness to the lost people there.  People called by the Lord to be His hands and feet in parts of the world other than where they were born are just that – called.  Secondly, if we are the body, then we are not all the same part nor do we all perform the same function.  This is divine design and when we are obedient, the body of Christ works in harmony to accomplish the will of the Father by doing separate tasks but also coming together in unity to lift one another up in prayer and boost one another’s spirits by offering an encouraging word.

We are humbled, honored and grateful that the Lord has opened our eyes to the plight of special needs orphans around the world.  We are thrilled that He has called us to adopt one of these precious children because we could not do this of our own volition even if we wanted to. 

He could have just called us to pray fervently, as He is calling some of you to do.  He could have pressed on our hearts to give to other adopting families sacrificially as so many have done to help redeem the lives of children living in conditions we cannot even fathom.  He is calling some of you to pray, some to give, some to advocate, and some to adopt.  What a blessing!

The need

If you search a little, there is much to read (and see) about the appalling conditions of orphanages for special needs children in other countries.  I must offer a disclaimer in that I have not personally substantiated and verified each of the following statements.  I have spent hours reading the firsthand accounts of others who have adopted (as well as watched videos) and the following is a condensed version of much of what I have read and seen. 

These children are not afforded the same rights given to American disabled citizens.  We have read that some countries are basically not handicap accessible.  There is no need for this since many disabled people are squandered away in mental institutions.  Our sweet girl and countless others were given up by their parents because they were born less than perfect in the eyes of a truly deceived society.  I have read countless places that many babies with illnesses or deformities are abandoned because their families cannot afford to care for a child with medical needs in their struggling economy.  There is also a societal stigma attached to DS and other disabilities.  Some who have traveled to Maeve's country say it is like stepping back in time.  Even if parents truly desire to care for their child, social stigma and pressure from their own families make it impossible.

It gets worse, when at the average age of five, these children are transferred to adult mental institutions and most do not survive the first year.  I’ve read 80% but what if that is an inaccurate figure and it’s only 65%?  Does it really matter?  Any child sentenced to die because they were born disabled, deformed, or with an extra chromosome, is one child too many.  Oh my heart. 

There are a lot of reasons for this, starvation among them. The baby houses are not as severe, but there is still neglect.  Lack of love, attention, stimulation, proper diet, and basic human needs cause these children to be underweight and lethargic. The tears are coming as I’m writing this but it must be said.  Their story must be told. 

It is so sad to think that we could even say that the baby houses are “better” than the institutions in which they will be neglected even more severely after being transferred at as young as four years old.  At the institutions, some never leave their bed or crib and some are tied to it.  Rows and rows of beds and cribs with silent children because they learned long ago that no one was coming to respond to their cries.  Some leave their bed to sit on a bench and do nothing, look at nothing, know nothing except that they will be led back to bed to do nothing and look at nothing. 

Does this sound extreme and insane?  It is.  It is also real.  Please pray for these children.  Please advocate if you are called to do so.

This edition of 20/20 tells about a boy in a Russian baby house and then an institution before he was adopted.  http://www.nbcnews.com/id/21134540/vp/42535819#42535819

     

Another mother

There was one story told of a woman who visited her child every day at the baby house while an American couple was there making their daily visits with their new soon to be officially adopted child.  She loved her child and wished to be able to raise it herself.  She visited every day.  She was in distress over the situation and asked her mother what to do.  Her mother told her to stop visiting her child.  What if she was our mother?  What if our mother, that we loved and trusted to tell us what was best, told us to abandon our child? 

How we are going to do this

We’re not!  God is.  (Big sigh of relief…) You can read on the RR website that adopting Maeve will cost approximately $25,000. We do not have $25,000.  (Surprise!) :)  We did not even have the initial costs to begin the adoption process until God provided.  We live in a one bedroom house and thought that would surely be a road block to begin this process, but nope…He said do this and He is making the way for us in all things big and small.  We are excited to see God continue to melt the mountains like wax to bring His plan to fruition.   

In the book of Joshua, before Israel crossed the Jordan River, it was commanded that the Ark of the Covenant was to go first because they had not passed that way before.  As soon as the feet of the priests who were carrying the Ark touched the water at the river’s edge, the flow of the water was cut off and the priests stood there – on the dry riverbed – while the nation of Israel crossed over. 

WE have not passed this way before!!  Our God will go before us and make the impossible possible or we will not go.  WE cannot bring Maeve home on our own.  We don’t have the power.  But our God is greater, stronger and higher than any other.  When He brings this to pass, it will be to His glory.  He will be due all the honor and praise.  So we’re starting now – Praise the Lord!  He is mighty to save!