This adoption journey, not what I expected part 2

Much, Much earlier in our adoption journey-in fact almost exactly 2 years ago, I wrote a post entitled “This adoption journey, not what I expected” Today, I want to write a part 2 to that post.  I am hesitant to write these words, only because I desperately don’t want to be misunderstood. I don’t want anyone to think for an instant I regret our decision to adopt Joy. I love our spunky little girl with all my heart, but I want to be honest with you, this journey has been more difficult than I ever expected.

When our family first said “yes” to adoption, we knew in our hearts God was asking us to adopt a waiting child-a child who was older or who had a medical need.  We prayed much about what kinds of special needs we thought we could mesh into our family and filled out numerous forms with various questions about special needs.  When Joy’s file became available, we scrutinized it, prayed over it, sent it to medical doctors and prayed some more. We knew she had a malformation in her brain. We knew she had a seizure disorder and would likely be on medication to control her seizures for the rest of her life. We also knew she was struggling academically and had learning delays-especially in speech and language. While some of these things were daunting, we trusted God and took a step of faith and said “yes” to Joy.  The file also indicated from a psychologist’s report that her delays were likely just that: delays and she would eventually catch up with her peers. It seemed like a diagnosis we could handle. I figured between a little extra one on one time tutoring and working with the school system, we could help Joy overcome those delays. I am so glad God often does not give us all the details. I think He knows we would be likely to say “no” if we saw all the difficult days ahead and we would never walk fully in the plan He has for our lives.

The day we took Joy back to the hotel from the orphanage, I could tell that her delays were much, much bigger than we originally thought. She had not made any significant progress in the year we had been waiting to get her.  It was difficult at first to figure out if her lack of comprehension was from switching from mostly Tagalog to all English; or if it was from the trauma of all the changes in her life; or if it was her delays. For quite a while, I blamed her lack of progress on being in an orphanage with mostly babies. Also, I had read books where often kids reverted to a younger stage after they were adopted as a way to cope. I hoped as the weeks went by and as I worked with her, we would see improvement academically.  However, as the days and months went on, we saw Joy struggle daily in school. Some days she still doesn’t know the letters of the alphabet and she does not comprehend the sounds they make. She comes home from school exhausted and frustrated from trying, but her brain cannot wrap around the basic concepts of language or math.

While I knew adopting a child with special needs would be difficult, I did not expect to have to battle with the school system to get our daughter tested and the help she needs. The psychologist in the school system would not take the records from the Philippines and insisted her delays were from the language switch and lack of previous education-even though it was evident after some time there was definitely more to it. We have finally won the battle, but it took a letter from Joy’s neurologist with the list of scary terms like: “schizencephaly” and “mesial temporal sclerosis”.  We discovered through the MRI she has not just one small malformation in her brain, but rather several. We have also discovered that schizencenphaly is a rare malformation and there is little known about how it affects the brain. Joy will be tested over the next few weeks and hopefully we will be able find the best way to help her reach her full potential.

In this adoption journey, I did not expect my heart to break when my daughter busts into tears because is so frustrated trying to get us to understand what she wants to say.  I did not expect the worries, the wondering, and the unknowns of her medical diagnosis-at this point, we don’t know if she will ever learn to read or how to do basic math. She also had a small seizure the other day-the first we have ever noticed since she has been with us.  We don’t know if her seizures will get worse as she grows. There are a lot of unknowns. I thank God He is in control and He is faithful.

And so, this adoption journey has taken me down a road I didn’t expect-a road of heartache as my daughter struggles with school, communication and learning; and a road of joy as she learns to love and become a part of a family. Joy has a spunky nature and a joyful heart. She may not understand or comprehend everything, but she knows how to love. This adoption journey continues and we help our daughter reach her full potential. We trust in God that He put her in our family for a reason and no matter what she can or cannot do, we will love her.  We will nurture her. We will pray for her. We will be the family she never had-and in that, God will change us. He will mold me to be a better mother. He will give me deeper understanding and patience. He will help me reach out to others who have children with learning delays and disabilities. This is not the end of the journey, it is merely the start.

Please pray for me as I try to learn the best way to help Joy. If you are a parent of a child with schizencephaly, I would love to hear from you and connect with you. Please feel free to e-mail me at violetsgirl@bellsouth.net.

One Day at a time

Do you ever just feel completely and utterly helpless as a parent? Today was one of those days. Joy was scheduled to be tested today by a  psychologist who specializes in dealing with children with epilepsy and learning delays.  I was really looking forward to this testing because I desperately want to help Joy learn and grow academically.  I felt like this was the next step and we would gain some ground on figuring out the puzzle and helping her learn to read, do math, and socialize better.  BUT....after about an hour of questions with very few answers from Joy that made any sense, the psychologist decided that it would be better to wait at least another 4-6 months before doing the actual testing because Joy's English is so delayed. He wasn't sure the testing would be very accurate since she has difficulty expressing herself and we don't know exactly how much she understands of what we are telling her. So, we are back to square one. And I feel completely and utterly helpless. Where do we go from here? I feel like we have come so far in 6 1/2 months, and yet we have so far to go. I feel helpless on how to assist Joy in getting where she needs to be academically. The psychologist recommended speech therapy, which she is already in at school. He recommended occupational therapy, which she also already does weekly. Are we already doing what we need to do? It seems like we should be doing more. Sometimes it feels like we are just going 'round and 'round in circles and getting nowhere in helping her!

I struggle often with sorting out the pieces to the puzzle of adoption and learning delays. What part of Joy's delays are due to the physical malformation in her brain? What part of her delays are due to being in an orphanage with much younger children? How has the life-changing event of adoption affected her? How in the WORLD do we sort this out? And so, we just take it one day at a time. On days like today, when I feel helpless, I pray and I think about how far we have come.  I pray for guidance to find the right therapists and the right child care for summertime. I pray for her teachers and for the transition next year at school. I pray that I will have the knowledge and wisdom on how to help her as her mom.  And I pray for Joy, that God will give her peace and strength and she will learn and grow to become the person God created her to be. I am so glad that although I may not have any of the answers, I serve a God who has ALL the answers. So for now, I am doing all I can do-just taking it one day at a time.

An update and some thoughts on special needs and the church

I cannot believe it has been over two months since I have written on my blog! A quick update: Joy is doing amazingly well! She has settled into a great routine, and really keeps us on our toes.  We have been blessed with wonderful teachers and therapists to help Joy, and everyone is truely amazed by the difference in her over the past 4 months! She loves her family, her teachers and her church family. Right now, the biggest struggle we have is figuring out how to help her in her learning abilities. She had an MRI about a week ago to help us determine what is going on in her brain. Honestly, I don't understand much of what the MRI told us. Her condition is very rare and every person who has this brain defect is affected differently, so now we go see more doctors. We will be taking her to do further testing to help figure out the best way to teach her. She struggles with speech and language, so reading is a HUGE challenge. She also struggles with numbers in any way, shape or form, so even simple math makes no sense to her right now. It really breaks my heart to see her struggle in these areas because I LOVE to read and I cannot imagine my life without this ability. I know God will give us the strength to help Joy in every way we can! Pray for her and for us as we continue on this journey of helping her to become everything God wants her to be. I love having her as my daughter, and I will love her no matter what. Even if she never is able to read. Even if she can never do math. Even if she has challenges her whole way through school.  BUT I want what is best for her and I want to help her in every way possible.

Having Joy in our family has opened up to me a whole new insight into special needs children and the church. While Joy looks like a child who has no special needs on the outside, she DOES have special needs. She has trouble sitting still to listen, because she sometimes doesn't process what she hears. She has trouble following a storyline, following simple instructions, and also sometimes remembering what has been told to her in the past. Her special needs are not on the outside, but they affect how she acts, which in some ways makes it more difficult as a parent. I feel like people are judging my parenting skills by the way my child acts, but I am getting over it! It really doesn't matter what other people think anyway!

 I have been in church my whole life. I went to church growing up (and still do now!): Sunday morning, Sunday night and Wednesday night. I went to Bible college. I found the love of my life at Bible college, and we got married. We've been in ministry for almost 14 years together now. We are transitioning from youth ministry to the lead pastors at our church here in Louisville, KY. Honestly, I look at the church (I am commenting on the whole of westernized church, not simply our local church!) and I wonder: Are we as the church really doing all we can to help special needs children and their families? What kind of support system do we have in place and how can we do better at reaching these families that desperately need understanding and support?  What about adopted children and families who have adopted. Many, many adopted children have special needs.  It seems we have created an environment in "church" that really is not friendly to special needs. We expect children to be quiet, slow down, be reverent. We expect them to sit still and listen, BUT some of these kids will never be able to understand a Bible lesson taught by a teacher. They cannot physically sit still. They cannot mentally process what a teacher is saying for 10 minutes. Have we shut the door on these kids? Have we made parents of these kids feel unwanted, unloved, unwelcome? Have we made them feel uncomfortable, maybe because WE are uncomfortable? Have we passed judgement when we maybe don't know what kinds of special needs the parents are dealing with? Have we made them feel embarrased by the way their children act? For example, Joy loves to sing. And when I say sing, I don't mean quietly sing. She likes to BELT IT OUT at the top of her lungs!!! Since she has difficulty with speech and language, she does not sing the words right at all! So here I am in middle of church and  you can hear Joy above EVERYONE else, singing words that make no sense. I have tried to quiet her to some degree, but I want her to know it is alright to praise the Lord with all her heart!  Thankfully, the people in the seats around me have never made me feel embarrassed or looked disgusted by how loud my child is. In fact, I have had several tell me how "precious" it is. I feel blessed by how everyone in our church family has embraced Joy and made her feel a part of our church family. I can't help wondering, though, does the "church" as a whole EMBRACE those with special needs and their families, or do we look at them with disdain or pity?

While many of these children may not be able to comprehend a Bible story or sit still through a lesson, what these kids and families CAN understand is LOVE. Welcoming arms. A listening ear. An understanding teacher. Others that will invite them out to lunch, even if their children are not "perfect little angels".  People willing to watch their children while the parents have a much needed night out.  I think many parents of special needs children have lost the strength to even enter the doors of church because overall the "church" has made them feel like a burden or a failure. The "church" has passed judgement on their parenting skills. The "church" has not even tried to understand where they are coming from and all they are going through: the therapies, the tests, the doctors.   I want to change this. I want to make a difference in the church. I want to make families feel welcome, no matter what kind of special needs they might be dealing with. I want to open our doors and love like Jesus loved. I want to create an environment inside and outside the church where we love and support children with special needs and their families.  I am not sure how to accomplish this, but it is something I am pondering. How do you think the church can do better at supporting special needs children and their families? How do you think we can make our churches more inviting or accommodating to families with special needs children? How do you think we as a church can LOVE like Jesus told us to? If you have suggestions, I would love to hear them. Please comment below or send me a private e-mail message.

Adopting an older child

When Darren and I first felt God impress upon our hearts to adopt and we began to do a little research on adoption, we both felt that God was leading us to adopt a "waiting" child. We were blown away by the number of children in orphanages over the age of 5. Once a child reaches the age of 5 or 6, their chances of being adopted plummets. So many people are willing to adopt a healthy, infant or toddler, but when a child has something medically wrong with them or they are older, children are often labeled as "unadoptable."  There are numbers of beautiful children and teenagers waiting for a family, who have been passed over simply because they are not a baby anymore! There are numerous others who have been passed over because they have a medical need, maybe even something small like a cleft lip or crossed eyes.

Our little girl is almost 7! Her birthday will be coming up here shortly and we hope to have her home with us so we can celebrate her birthday as a family. She does have some special medical needs, but when we consulted physicians and spent time in prayer...God gave us peace that He will give us the strength to handle whatever comes our way. (And to look at her picture, you would never know it!!!)

We are excited to become a family to a little girl who has been waiting....who has watched friends go home with their forever families and who has expressed desire to be adopted; however, adopting an older child has some challenges as well. Many of these children carry a heavy burden from their past and a feeling of rejection. Many of them are scared to love their adoptive family because they don't want to face being abandoned again. All of them have dealt with pain beyond their years; and yet, God loves each and every one of them. How are they to know God's love, if someone doesn't show it to them? We are praying that we can be the family that Joy Noelle needs and that we can show her God's love in a whole new way.

This fundraiser we are doing with Give1Save1 is the LAST fundraiser we plan to do! Will you help us raise the funds needed to purchase our plane tickets? Round trip plane tickets to the Philippines cost about $1200 EACH right now and $900 for a one way ticket home. For just Darren and I and Joy Noelle, that is $3300.00!  We've raised $853 in the last two days. Our goal for the week is $3000 toward the plane tickets. Would you help us get there by donating $1 at http://www.give1save1asia.blogspot.com/ and sharing our story with a family member or friend?