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.
