Sunday, February 8, 2015

Leo's Mom

In the past few days there have been numerous news reports about baby Leo who was born in Armenia.  It's been reported that his mother gave the father the ultimatum that it was her or the baby.  Why?  Because Leo was born with Down syndrome.  His father chose to parent Leo instead of placing him in an institution.  There have been many negative comments about his mother.  As an adoptive mother of two children with Down syndrome here is my perspective on the situation.

In Armenia and many other countries around the world when a baby is born with a disability doctors tell the parents they can send the child to an institution.  They don't need to be "burdened" in raising such a child.  In our own country this happened not so long ago.  Today many of our own doctors give a prenatal diagnosis of disability and in the same breath offer to schedule and abortion right away.  The parents shouldn't have to be "burdened" in raising such a child.  Many of the same people who are quick to demonize Leo's mom would nod their heads in silent agreement if only a few months before she had decided to have the doctor rip Leo from her womb limb by limb (for my friends who shared this story with me on FB, I absolutely know that you are not of that opinion).  They think it's only fair to allow a woman pregnant with a child with a disability be given extra time to decide to abort than is given for a typical child.  After all, who should be burdened by such a child.  In Armenia they hide their children with disabilities behind the closed doors of an institution.  We get rid of ours behind the closed doors of a doctors office.  Before we have this collective rush of judgement of Leo's mom perhaps we need to examine how WE really feel about a life lived with disability.

My prayer for Leo's mom is more a prayer for her country.  That they would see the value of people with disabilities.  That they would develop structures to support families living with disability.  That parents would be encouraged to see past the diagnosis to see their child.  Perhaps Leo's life would be a catalyst for that.

My prayer for our own country is that OB's would be willing to admit that while they have the textbook knowledge of the potential problems surrounding disability, most have little contact with the people behind the label.  That families would be encouraged to connect with other families who are parenting their children so they could see beyond the initial diagnosis.  And if they still felt unable to parent that they be made aware of the hundreds if not thousands of families willing to adopt the child.  I wish we would be as uncomfortable with an abortion rate of 60-90% for children with disabilities as we are with a scared mother living in Armenia.

Friday, February 6, 2015

Baby Girl Update

When we adopted our son internationally the children that were available for adoption had a short profile written about them.  It gave what background they had about why they were orphans and some of their medical history.  While waiting for our daughter domestically we would receive a brief description of birth mom's history and the known or expected medical issues of the child.  In both situations some the profiles for the children were long and intimidating.  The first time around some of the profiles scared us away from certain children.  By the second adoption we never got to the point of saying no to a child because of their profile description.  Instead we prayed that if God wanted us to adopt the child with the long medical list that he would prepare us and then we waited to see if we were chosen.    My hubby and I were just saying the other day that if our baby girl were waiting to be adopted now her profile is getting longer and maybe more intimidating to some.  But she's just our daughter and while the medical issues take time they aren't so intimidating now.  I'm assuming some friends and family would like a little update on our baby girl, but part of me hesitates.  I don't want her to be seen as a list of problems.  She's our beautiful daughter and no list of medical needs makes us wish she wasn't.

So here's where we are now.  She's five months old and working on rolling over.  She'll get up on her side and just hang out there for awhile.  I gave her a gentle push one day that sent her over on her belly and she started giggling.  Tickles to the toes and those chubby little thighs will also elicit a laugh.  I love baby laughs.  In the evenings she's fairly talkative and will coo and babble for quite awhile.  She also likes to coo to her big brothers and sister.  They enjoy coming and talking with her and she just watches and talks.  Nights have been quite easy with her and after having several babies that were not good sleepers, I am incredibly grateful for the gift of sleep with a baby in the house.

When I first traveled to stay with her in the NICU the doctor thought once Mommy was there she would start getting the hang of sucking from a bottle.  I hoped that she might be able to nurse as well.  A couple days after being with her she sucked on my finger for a good 15 minutes with a very strong consistent suck.  We were all very hopeful she would continue, but that was the one and only time she did.  The coordination it takes to maintain a consistent suck is just something she has not been able to get the hang of.  After returning home we were able to get in to the feeding clinic.  There we tried different bottles and exercises to help her get it figured out, but on a good day of feeding from a bottle she'd take 10-15 mL of formula in a day when she needs around 750 mL per day.  She was seen by an ENT to make sure there were no physical anomalies to prevent her from sucking and he found nothing.  It's not unusual for a child with Down syndrome to have difficulty feeding initially, but this level of difficulty for such a prolonged period is unusual.  Currently she is being fed by an NG tube which enters her nose and goes down to her stomach.  She could be fed this way for as long as she needs supplemental feeding, but as she's growing and moving she's also getting much better at pulling it out of her nose.  There's also concern that it could cause oral aversion the longer it stays in and since she's already a little sensitive to too much oral stimulation we don't want the NG tube adding to that.  So the plan is for her to have surgery in February to have a G tube placed directly into her stomach.  The doctor will go in through her belly button and place a little button-like device that will sit on the outside of her skin with a small tube going directly into the stomach.  Inside the stomach a small balloon inflates to keep it in place.  It was a cool little contraption.  Once it heals it should be difficult for her to pull out especially with a onesie on over top.  She'll be able to do everything we can do with it in and we'll be able to let her hands out of her swaddle without having to worry about it getting pulled out.  It's a much better long term solution for her feedings.  We are expecting her to have the G tube for the next couple of years, but at this point we expect that she will begin to eat on her own and will not need the G tube for life. 

I realized tonight that I am also looking forward to not having her feeding issues so visible to people. I tend to forgot about the tube because I'm so used to it, but remember how unusual it is for other people when we go out in public.  I don't mind the questions, because I know we stick out.  Our skin doesn't match, so people wonder about that.  She has a tube in her nose and taped to her cheek which you don't see every day.  It's natural that people are curious and I'm perfectly happy to answer questions, but sometimes those questions lead to pity for her and pats on the back for us.  She needs no pity.  Thanks to a simple medical intervention she is a healthy baby girl.  I am incredibly grateful for that little tube.  Then there's the stated or implied idea that we are somehow noble for "taking that on."  How do I express that we haven't "taken that on" but are simply caring for our daughter.  Parenthood has stretched us in ways we didn't image before having kids and each child has had their own unique sets of abilities and challenges.  Learning to care for a tubie baby has been stretching at times, but that's not unusual to parenthood.  I am so glad we moved from saying we could never care for a child with a feeding tube to asking God to prepare us if the child he brought needed that intervention otherwise we wouldn't have our sweet daughter.  If I could make one request of you.  When you see a person with an obvious disability please be willing to look past what you may think is a problem or burden to see the person in front of you.  That person is more like you than different from you.

Saturday, October 11, 2014

The Journey to Our Daughter

We brought our son home from Hong Kong a little over a year ago.  Not long after he came home we started talking about when to start the adoption process again.  At the beginning of his adoption we knew we would adopt twice, because we wanted our adopted child to have that connection with someone else in the family.  We played the name game, throwing out names for our next child.  For the sake of privacy I'll say we settled on the name Sarah for a girl.  Not long after that the adoption agency posted the profiles of 14 children in China with Down syndrome needing families. One little girl was Sarah.  We told our kids about the children and we all prayed together to ask God to bring families for these kids.  Our second son asked if we could be one of those families.  We wondered the same thing so we started looking into adopting Sarah.  At first it looked like it might work out, but soon realized that the door was closed to us for the time being. (In this past year every one of these kids have been taken off the waiting child list as families have started the adoption process to bring them home).  At that point we decided to give our family six months to transition with a new child at home and then revisit the idea to decide of starting the adoption paperwork again.  Mid-January came and I felt like I was to pray for Sarah because someone from our agency would call to ask us to adopt her.  I thought this was just me being a little crazy.  Stuff like that doesn't happen often and it certainly doesn't happen to us, right?  But, I continued to feel like I should pray for Sarah so for the next two weeks I prayed for her, for her family and that God would prepare us if we were to adopt her.  The end of January we talked about adopting again and decided that since international adoption would take a year or more we would go ahead and start the paperwork.  The next day our social worker from the adoption agency contacted us about a baby due in the States with DS and the family was considering adoption.  Our social worker wanted to know if we would be willing to be considered as a placement for the baby if needed.  After finding out we could easily switch from a domestic home study back to an int'l one if they decided to parent, we went ahead to complete the domestic home study.  That situation did not work out for us and come summer time we didn't feel quite ready for all the paperwork that would be coming for the int'l adoption process so we registered with the National Down Syndrome Adoption Network with the plan that we would go back to int'l adoption in the fall or winter.  The NDSAN called several times about different children, but other families were chosen to adopt.  It was a bit of an emotional roller coaster and I was figuring out that we needed to try to stay emotionally detached from these potential placements in the beginning.

Every year I take pictures of our kids at the end of summer. After taking our daughter's pictures we looked back at her photos from past years.  She kept asking about where her clothes were that she wore in them.  When I told her she had grown too big for them and they were in a box she said "Mommy, we need a new sister so she can wear my clothes."  I told her she could pray about it without thinking much of it.  A week later our social worker called.  They had a baby girl in the NICU with DS that needed a family, would we like our profile shown.  I said yes and when my husband got home that Tuesday evening I asked if he wanted to hear the latest situation that probably wouldn't work out.  We talked a little about how we would travel and arrange things at home, but didn't expect much.  Wednesday morning I was on a field trip with our kids when the social worker called back.  We had been chosen as her family!  It felt surreal as we arranged travel plans and child care.  I flew out on Sunday to be with her.  She ended up being in the NICU for just under a month and I was with her for 3 weeks.  She was released with an NG tube for feeding, but otherwise seems healthy.  Had you asked us last year if we would adopt an infant domestically we would have thought it unlikely, but God had other plans and we now have our beautiful daughter home with us.

On this side of the adoption, it's fun to see how God has been preparing us to bring her home.  1. At the beginning of our son's adoption we had to fill out a form about what medical conditions we were comfortable with.  It's not a fun process, because we knew that every time we said NO, we weren't saying no to a condition, but to a child that needed a family.  One of the things I said no to was feeding tubes.  NG tubes, G tubes, I didn't care.  It all sounded a little too scary to me.  Fast forward to the beginning of this summer and we heard about a baby girl that had some medical conditions requiring G tube feeding.  I asked some other moms that had adopted kids from Hong Kong with feeding tubes and their responses were very similar.  Once you get used to the feedings, it's really no big deal.  Another family was chosen for that little girl, but I was now much more comfortable with the idea of a feeding tube.  2. Since we were registered with the NDSAN we saved the money they recommended for an adoption, but we neglected to save for traveling expenses.  Last spring we decided we'd like to get a little used car as a second car, so we saved up for that.  The end of August we decided that a second car was a luxury and not a necessity, so we planned to send the money to pay down student loans.  I had written the check and was getting ready to send it when we found out about Sarah.  I decided to wait a day to see if we were chosen or not.  Once we were chosen I kept the check and we used the money to pay for her adoption.  The additional fees and traveling expenses totaled up to just a couple hundred dollars more than what we had saved for the car.  3. Another situation came up where we would have had to leave about 3 days later to get the baby.  We made a tentative plan, called my parents to find out if they could help out on such short notice and then found out that once again another family had been chosen.  When our social worker called about showing our profile for our baby girl saying that one of the requirements the agency had was that one parent be able to travel quickly to stay with her in the NICU, we already had a plan in place to make that happen.  Had my mom not been able to stay with the other kids on short notice, making it possible for me to travel quickly and stay for three weeks, the social workers would have looked for another family.  These are just a few of the things we've seen over the summer that God has used in getting us ready for her.  In the midst of disappointments He was preparing us for our daughter.

Tuesday, May 6, 2014

I've been remembering the summer I spent volunteering at the orphanage a lot during this past Thanksgiving/Christmas season.  It was an intense summer.  Some planned experiences and other completely unexpected.

Entering the orphanage for the first time I didn't know what to expect.  Was there a routine to follow?  How were we expected to interact with the kids?  I followed the women I was with to a hot stuffy room with blankets spread out on the floor.  The workers brought the children in and laid them down.  Some of the kids could crawl/drag themselves over to us, but most were not mobile.  The first day we picked up one child, played with her for awhile and then went on to play with the next child.

Many of the kids responded positively to the interaction and would often cry when we set them down.  One little girl cried when I picked her up.  I tried interacting with her the same as the other children, but she only became more upset, calming down only when she was set back on the blanket.  During the rest of our time that day I watched as she reacted the same way with the other volunteers.  Several visits later the orphanage workers quit brining her in altogether, so I went searching for her.  She was laying in a sopping diaper and wet sheets behind the cold metal bars of her crib.

As I walked over to the crib the mere presence of someone standing there clearly made her agitated.  I asked her name.  Nigar.  Nigar wanted only to be left alone.  What made her so fearful I can only imagine, but I decided to spend time with her every day I visited.  Standing over her made her nervous and even a gentle touch drew her into herself even more, so I pulled up a chair and sang.  Eventually she wouldn't wince when I would come in to sing.  I then started to stroke her arm lightly for short periods to see if she would tolerate it and slowly she relaxed with that as well.  It was my hope that eventually she would allow herself to be held without recoiling.  But the summer was over too quickly.  It was time to leave.  I talked with one of the other women volunteering and explained where to find her and what I was doing hoping Nigar would continue to get loved on.  It was hard to leave.  How I wished I could have brought her home.

The family I was traveling with had planned to stop in Turkey for a week and I was very excited about our time there.  It had been my dream for as long as I could remember to return to Turkey and it was finally happening.  Our plane landed and we arrived at the hotel about midnight.  Sometime around 3am I woke up shaking.  Wait, it was the bed that was shaking.  In a 3am fog I finally realized it was an earthquake.  The woman I was sharing the room with was already in the doorway and as I quickly joined her we watched as other hotel guests rushed into the parking lot in their whitey-tighties.  It seemed to last forever, but finally the shaking stopped and we went back to bed.  Smart?  I don't know.  What is a tourist supposed to do once an earthquake is over?  I laid there for awhile wondering if it would start again.  The next morning the news report said it had been a 9.8 earthquake centered about 30 miles from where we were in Istanbul.  The casualty rate quickly climbed from the hundreds to the thousands and kept going up.  Later they would downgrade it to a 9.3 or 9.4 and estimated that over 18,000 people had died.  The area we were in saw little damage, but as I watched the news of all that was happening just 30 miles away I couldn't just sit there.  A group of people from the hotel arranged to go out to help find survivors and I quickly signed up to go.  To be honest I was quite scared of what I might see.  This was not the way I envisioned a trip to Turkey turning out.  As it was, most of the rescue work that could be done by individual people had been done in the first day or two after the earthquake.  By the time we arrived they were brining in heavy machinery to move the concrete slabs that had once been apartments.  Rescue dogs searched the rubble for survivors.  The dogs eventually came and found no one alive at the apartment complex we spent much of our time working.  A couple days later I was able to join a group that was delivering relief supplies to people living in tents cities set up by the Red Crescent (the Muslim version of the Red Cross).   It started to rain not long after the earthquake and the ground of the tent cities was squishy with mud.

I had left for my summer full of anticipation and on a spiritual high. The months leading up to the trip were a break from the normal college routine and I had had much time to sit and be with God, to study the bible and spend time worshiping.  I returned overwhelmed, angry and full of questions.  I was no longer riding a spiritual high, but muddling my way through a spiritual crisis.  There were so many things to wrestle through.

The college I attended had people briefly discuss their summer trips during chapel time.  What would I say?  I wasn't sure, but decided to talk a little about Nigar.  I was able to talk with a few people afterwards about the trip and mostly they were positive conversations, but one man did not like the idea of people visiting orphanages.  His objection was along the lines of the fact that these kids were not puppies that people could play with for a short time and leave behind.   In his opinion it was a cruel thing to do. Over the next month I wrestled with questions that people have struggled with for ages and  I came out with a stronger faith in the goodness and love of God and a stronger commitment to my relationship to Him as His child.  One question, though, I've had in the back of my mind since then.  It's maybe not as significant as some of the other questions, but I have still wondered about what the man said regarding the visit to orphanage.  Had my good intentions done more harm than good?

This past November I attended a retreat for foster and adoptive mothers.  One of the speakers was a woman named Stephanie Fast.  She was abandoned in South Korea around the age of 4 and spent the next 5 or 6 years as a street child.  She shared with us a small fraction of what she and many other street children endured everyday.  Eventually she was brought to an orphanage and adopted at the age of 9 by an American couple who had come intending to adopt an infant.  Her story was about redemption which is hard work.  She shared about a time prior to entering the orphanage when she was caught by the villagers she had been stealing food from and was tied to a moving water wheel.  About the time she was sure she would die a man, whom she could not see because of the effects of being drug through the water, took her off the water wheel and placed her on the ground.  He washed off her face, touched her gently and told her "You must live."  He did not give her food to satisfy her hunger or bring her home to give her a family, but he showed her kindness and spoke life into her.  She did not see his acts as cruel, but recognized the kindness and held onto his life giving words in the years to come.  Stephanie told the audience that our kindness and life giving words are not wasted.  They are not wasted.  I have wondered if I should have ever gone to the orphanage.  It made a difference in my life.  It opened my eyes to needs of orphans and people with disabilities, but what about the children I left behind?  Stephanie was in a place where she experienced cruelty just as the children that lived behind the cold walls of the orphanage.  She was shown kindness by a stranger and she held onto the kindness for many years to come.  God uses even our feeble attempts to show His love to His children and I pray that our kindness made a positive impact on the children and helped to show the value of life to the orphanage workers.

Monday, October 21, 2013


I recently read a quote by Jon Bergeron, Ph D. for Hope for Orphans.  He said "Adoption day isn't the first day of happily ever after.  It's the first day of rehab."  Reflecting on our week at Outdoor School I think this was a good reminder for me.  In many ways our adoption experience has been ideal.  There's been the normal adjustments when adding another child to the family, but he came home sleeping through the night, is a pretty content boy and has fit fairly easily into our family.  It could seem like happily ever after from our side.  But from his side, it is rehab and we as parents need to be mindful of that.

I was getting ready to take the two youngest to their class the first morning of Outdoor School.  My plan was to stay with our son the whole time, but a part of me wondered if he'd be fine since things have been going so well.  I set him beside some toys and took my daughter across the room to change her diaper.  He quickly realized I wasn't beside him and while I could see him, he did not see me.  He fell apart.  Deep sobbing cries that he cried when we first took him from his foster home.  I finished with my daughter as quickly as I could and took him from the worker.  We sat on the couch while I sang to him.  He cried.  I rocked him.  He clung tightly.  I whispered I loved him.  He kept his head against my chest.  I told him I wasn't leaving him.  Slowly he looked up at me and then set his head back down, his grip remaining firm around me.  This was common in Hong Kong and our first few weeks home, but hasn't happened the past few months.  This is rehab.  His experience has been that new places become permanent and care givers disappear.  And while he is an easy going boy it will take time to see that Mommy and Daddy always come back and new places are not something to be feared.  Overall he had a great time running around outside and playing with the other kids at Outdoor School, but we made sure that my husband or I was with him all of the time.  It was a good reminder that the voice that whispers to keep him close needs to be heeded for this time of rehab, however long it may be.

Saturday, October 19, 2013

During college I worked in Developmental Therapy as a Therapy Technician.  After graduating my boss moved away and I was promoted to her position of Developmental Specialist. (It still makes me laugh that they gave a 20-something childless college graduate the title of Developmental Specialist.  As a mother of four now I can see that I was fairly clueless, in the practical sense, of childhood development).  Many of the kids on my caseload I saw in various settings; at home, at school, out in the community.  Overall, their behaviors were pretty consistent.  One little girl, however, was a very different girl in therapy and at school than she was at home.  I knew I was no expert on parenthood, but could see a lot of the behavior problems she had at home had more to do with parenting style than her disability.  Her mother wanted things to be easier at home, but insisted that the behaviors were due the disability.  The daughter was defined by her disability in eyes of her mother.

We attended Outdoor School last week as a family and it was the first time we were around a large group of people who didn't know that our son has Down Syndrome.  While he does have some of the facial features common in people with DS, it's not always all that obvious and often times people are surprised when they hear his diagnosis.  However, the way he interacts with his world is like a child about 9-12 months younger than his chronological age.  So, at Outdoor School, I struggled for the first time about how to introduce my son.  When asked about his age do I tell them he's 2 and leave it at that.  Do I say he's 2 and has DS?  It probably depends on the situation, but I'm wondering how to decide when it's necessary to reveal his diagnosis.  Where is the line between defining my son by Down syndrome and facilitating how he and others interact together?  I think, so often, people with DS are defined in the eyes of others by their diagnosis.  They are not "Sally who has DS."  They are the "Down Syndrome child" and in a way loose their identity to their diagnosis.  DS certainly affects who my son is, but he is so much more than DS.  I guess I'm not sure how to express that in a simple introduction.

Tuesday, October 1, 2013

Good Gift

They are words not uncommon to a couple expecting a baby.  Words we probably uttered ourselves at some point in our three pregnancies.  "As long as the baby has 10 fingers  and 10 tens I'll be happy" or "As long as the baby is healthy I'll be happy."  And now I wonder why did I think my happiness should be  based on the health of my child.  In some ways it reminds me of the times I prep my kids before their birthday parties.  "Now remember to be thankful for every gift you receive, even if it's not what you were wanting or expecting."  A gift.  I wonder if we see children with disabilities as a gift.  As a good gift.  I suppose I've been more aware of the words people use surrounding children since adopting our son and wonder what attitudes I had before becoming a parent of a child with a disability.  A family I know was told this summer that they "deserved a healthy child."  There is a whole other discussion about what we as Americans think we deserve, but for this discussion think of the opposite of that statement.  When a child with a disability is born the opposite is either that the family didn't deserve that child or they got exactly what was coming to them.  I don't believe the person meant it that way, but the statement itself reveals the value we place on "normal," typical and healthy.

Everyone of us is living life with challenges.  Everyone of us needs the help of God and a community of people to overcome these challenges.  Most likely my challenges and your challenges are easier to disguise than the challenges my son faces.  What value do we place on people based on their challenges?

My children have received many different types of gifts.  Some work as expected right out of the box.  Others take more time and effort than anticipated.  Both are good gifts.  And so it is with our children.  Psalm 127:3 (NLT) says "Children are a gift from the LORD" and Matthew 7:11 (NIV) says "If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"  Good gifts.  Our children are good gifts.  The bible does not qualify it to say "typically developing healthy children" are good gifts.  A child with a disability may not be what some were envisioning, but God whispers "Trust me my child.  Trust me in the unexpected.  Trust me through the difficulties.  I have given you what is good."