A letter recently sent to our friends and family:

It is difficult to know how to express everything we want and need to express but we will try our best.  On April 7th we were asked to adopt a baby boy who was due on April 20th.  Instead that baby boy came on April 9th and we named him Kai Matthew.  When Kai was one day old, the pediatrician at the hospital found bilateral cataracts.  When Kai was five days old, we were told by the ophthalmologist that neurological issues often go along with congenital bilateral cataracts.  Our pediatrician cautioned us that there might be some sort of underlying cause tying all of his issues together.  We began making multiple appointments at Children’s Hospital in Denver with Neurology, Metabolics and Genetics.  When Kai was three weeks old, we saw a Metabolic specialist.  He examined Kai for about 10 minutes and then told us he thought it was highly likely that he had a rare metabolic disease called Lowe Syndrome.  Once we discovered what that was, we were devastated and in shock.  As we learned what all this syndrome encompasses, we began to ask ourselves if we were the right parents for Kai and if we were equipped to give him all that he needs.  We also began to take a serious look at what changes would need to take place in our lives as we began the journey of parenting a child with severe special needs.  And all along as we asked ourselves these questions, we knew we had a choice to make.  From the day the cataracts were found we had doctors and adoption social workers asking us if we wanted to continue to move forward with the adoption, and now three weeks into it we were starting to ask ourselves the same thing.  When Kai was 5 weeks old, his diagnosis of Lowe Syndrome was confirmed and we knew that it was time to make a choice . . . a choice that we had been struggling with for several weeks already.  We shared with a few, sought counsel and wisdom from those we respect and talked with parents of kids with severe special needs.  In the end, I think our pastor gave us the best advice.  His advice was to pray for wisdom and discernment to know what God is calling us to do and to bring everything to God. . . our confusion, anger, fears, all of it before God.  There is obviously no easy path.  Both choices are excruciating and seem unbearable.  We prayed that God would show us what he is calling us to do with this child at this time.  Perhaps we were to raise and take care of Kai for the remainder of his life or perhaps we were to take care of him for now.  I don’t think I can begin to tell you what the past 7 weeks have been for us.  We have struggled, wrestled and grieved over this agonizing choice that we have to make.  And after much prayer and many tears, we have decided to let Kai go.  While this decision brings us unbearable pain, we are at peace with this decision.  Some may not understand our decision; some may not even agree with it but we are at peace. We truly love this little boy and we are doing what we believe is best for him and for us.

One blessing in the midst of this heartache is a Christian organization that specializes in special needs adoptions.  Our social worker had told us there were families ready and waiting to adopt kids such as Kai . . . families who feel like it is their gift and calling.  There are over 500 families waiting for special needs kids at this organization alone; and ironically (although we didn’t know it at the time), just a few days before we made our final decision, a family called this organization asking if there were any boys with Lowe Syndrome available.  They had lost their son to Lowe’s and wanted to adopt another affected boy.  Within hours of our agency’s first call to this other agency, they had multiple families sending in their profiles ready and waiting to adopt Kai.  The final decision on which family he will go to has not yet been made; but just knowing that there are over 20 Christian families who feel called to special needs kids and want to adopt Kai has brought us so much comfort in the middle of such a heartbreaking situation.

Our adoption agency will help us continue the adoption journey but this is not about giving Kai up so that we can adopt a healthy child instead.  It’s about making the best decision for Kai and for us. He will always be a part of us and we know that this part of our story has changed us permanently.

Lowe Syndrome is extremely rare (there are currently just over 400 reported cases in the world).  Kai will have physical challenges, he will be mentally challenged, and he will have behavioral issues (from what we have heard from the physicians, this is the most difficult part of the syndrome with most behavioral issues being practically unmanageable).  Kai’s life span will be approximately 30 years if he has no complications; and he will need care for the remainder of his life.  For those of you who are curious about what exactly Lowe Syndrome is, here is a link to the most accurate information on the disease: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=lowe (a bit scientific but much of it is understandable).

Please pray for us, Kai, his new family and his birth mom who has of course been devastated by this news.  Thank you for your prayers.

Russ & Rebecca