January 23, 2009 cerebral palsy, Family Stories 2 Comments

By Sheryl, mom to Graycen HongYuan and soon Galia RunYi from China with cerebral palsy

We adopted our daughter, Graycen, in December 2005 as a non-special needs referral. Back then we only waited 7 months from LID to referral, if you can believe that? The short wait is truly what made us not even really consider going special needs. Graycen was 11 months old when we brought her home. She was a happy, bright, sweet girl, then and now. She was very delayed physically; not sitting up, crawling or rolling. We expected orphanage delays, but hers did not really make sense. None of her 11 orphanage sisters had delays, they were mostly on target. She was socially not delayed, which you would expect to accompany physical delays from an orphanage. She had also been in foster care for 4 months before we adopted her. We brought her home and even with all our love and attention, she was not really making a lot of progress with her developmental delays.

After we were home about four months, our pediatrician said the words, “spasticity” and “cerebral palsy”. We were very uneducated about those words, and quite frankly, they scared me to death! Thank goodness for the internet and search engines, for I quickly began educating myself. The most important thing I learned that first day was that CP was a condition that did not get worse, management of the symptoms was the biggest issue.

We were given an official diagnosis of spastic diplegia cerebral palsy when she was 18 months old from our neurologist at Children’s Hospital in St. Louis, MO. We have an awesome neurologist, who happens to have CP herself! She is an amazing inspiration to her patients and their parents.

Graycen’s CP is moderate, not mild. She is not yet walking independently at 4 years old. For our family, we have discovered this is a manageable special need. Not really by choice, but by no other choice. We love our daughter, and have fought and worked hard to get the best care for her. It was not easy–it is not always easy now, but totally worth it. We were devastated at first, just as finding out any special need of any child that you are not prepared for. We adjusted our plans and dreams for her, and are equipping her to achieve anything she chooses to go after. She is the happy, funny light of our lives!

We feel that God chose us to be her family for many reasons. The most recent reason we have discovered is that it has equipped us with the knowledge we need to parent another child with CP. We are adopting again from China, this time choosing a child with CP. If Graycen had not been placed in our family, we would have never felt led to adopt a child with CP.

We fully expect Graycen to walk independently some day. I used to hope that was when she was around 2, but now I am praying for her to be able to use canes by the time she is 6, eventually not using any assistive device. We also hope for this for our second daughter. Right now Graycen is able to walk using a reverse walker and ankle-foot orthotics (AFO’s). That is when she wants to. She is 4 after all!

We found out about a sweet girl that we felt led to adopt. Her file was on its way to China Center for Adoption Affairs (CCAA). We heard about her through a family that has been sponsoring her care in China through Love Without Boundaries. The details slowly worked out, and we have finally been matched with her through our agency. She is 8 months older than our daughter Graycen, and she also has cerebral palsy, and not yet walking at 4.5 years old. We feel they will be a perfect pair of sisters. We have recently received our LOA and hope to travel soon to bring her home.

When we set out to try and bring this child home to our family, we knew that it was a long shot. We found out about her through circumstances that could not be an accident—they were too coincidental for that. We could only explain it as a “God thing”. As we heard more of her story, we felt that we were destined to play a significant role in the next chapter. Because of her physical special need, we knew that many families would not consider her. We have learned that cerebral palsy is a manageable special need for our family, and felt equipped to become her family. We have gained the knowledge and resources to give her a loving, supportive family from parenting our daughter Graycen. We wanted to help her reach any goal she set for herself.

As we tried to rationalize the concept of adopting this child, we had many things in the “reasons not to do it” column. While we listened to our hearts, the shorter “reasons to do it” column seemed to override the longer list. The first, and of course biggest obstacle, was the fact that we had no money to even begin this venture with. We were still paying on the loan we acquired to adopt our daughter Graycen, and knew that taking on more debt to complete another adoption was not an option we could consider. We knew the majority of the money required would have to come from grants. I started filling our several applications and my husband began working extra jobs to earn money so that we could pay for our home study and other initial fees required. We decided to jump in with both feet, knowing that if it did work out, there would be no other explanation than the hand of God orchestrating it all. As time went on, we were very blessed to receive some grants. This was further confirmation that we were on the right path by bringing her home to our family.

In addition to the financial aspect, making this adoption seem irrational, were the issues of actually finding her file and then getting her file assigned to an agency that would be willing to advocate on our behalf. We found an awesome agency, and they were relentless in pursuing this child’s file. Finally we received the call from them that the CCAA (China Center for Adoption Affairs) had assigned her file to them and we could submit our Letter of Intent to become her family. We completed this that day and received pre-approval two weeks later. Our dossier was completed and sent to China, and we were officially logged in. We now were realizing that this “long shot” was becoming a dream come true for our family. It has been an amazing, overwhelming, honor to see her story unfold, with our family being given the gift of becoming a forever family to this sweet, beautiful girl.

We have been shown through this process that just because something seems irrational and impossible, it doesn’t mean that you shouldn’t step out in faith and try to accomplish it. Especially when you are talking

about the life of a child that deserves a family. We have been humbled by the fact that we are in this child’s story, and get to share her adventure through life.

Although our family’s story is not one that started out with us having a heart for adopting special needs children, you can see that is definitely what we have become. I know that since the shared list began, I have seen many children with a special need listed as “cerebral palsy”. This diagnosis can cause many families to not even consider these children. This was our family before we were blessed with our daughter Graycen. My message is this: CP can mean many different things; it is often called a “blanket diagnosis” by many physicians. If you are considering adopting a special needs child and see one with CP as their special need, take look at their file and give them a chance. Do a little research and see if you feel your family could manage this special need. They may just be the right child for your family. Graycen has blessed us more than we could have ever imagined, and I also expect that our second daughter will be a wonderful blessing.

I am by no means an expert on CP, but I have learned many resources that I would be happy to share with any family considering a child with cerebral palsy.

You can visit our family blog here, and follow our 2nd adoption journey here!

2 responses to “Gracen”

  1. Susan Jennings says:

    I really want to speak with you. Our story is very similar to your first story. At 10 months our daughter was very delayed. At first we thought it was orphanage delays but it became clear when she didn’t “catch up” that something was wrong. She is doing very well now at 9 years old, but CP and her therapies remain a very big part of our lives. This past weekend my daughter and I attended an event Chinese Adoption Sibling Program at Yale. They screened the film in which the adoption of your second Chinese daughter with CP was featured. I was so very moved by your story of your daughters. We only know one other girl with CP and she is much older than Faye. I would so love to speak with you. Please email me to set that up if you are interested. We live in Great Barrington, MA.
    Susan Jennings

  2. Mary says:

    I would like to read these blogs (similar situation), but access is denied. May I join? If so, how?

Leave a Reply

Your email address will not be published. Required fields are marked *

© 2024 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.