It's A Family Affair

We celebrated National Down Syndrome Month by thanking our family.  We are grateful for our precious James and for our wonderful children that have been on this journey with us. Thank you Tiffany for being such a great big sister... you have loved James with us... you have taught James how to play baseball, basketball and have been such a blessing to him and to us all these years. We celebrate James, but we also celebrate his brothers and sisters that have poured into James' life all these years....

We are so grateful for Holly who has played such a great part on our journey with James.  Holly (James calls her "My Princess") has such a gentle, quiet spirit with him. She calms him down with her gentle nature and they love each other dearly. Holly has taken such good care of him and has had a sense of looking out for him and protecting him. Thank you, Holly for loving and taking care of James all these years...He “wuvs” you!   You are amazing!

Last week, James got to escort one of his friends who was in the Homecoming Court! Robert put together his outfit. We thank  Robert who has grown up just loving and being such a great big brother to James. James calls him "Bobert" and looks up to him so much. Rob has included James with in his group of friends and invites him to go with him on so many activities. Thank you, Rob for the way you love James and for all the sweet things you do for him. We are so blessed.

Lastly, we celebrate Coco's contribution to James life...She was only 4 years old when James was born and was very much a part of his initial health crisis when we had to go back to the States. She came to every therapy session and helped us to do the therapy at home just naturally. James loves to prank her and gets so much satisfaction from joking her! I am so thankful for Coco and her sweet attitude of care and acceptance of James. She has had to share all the attention from us from when she was four and was so sweet about it. I love seeing them just love life together!

Our Life With James...God's Provision in the Early Days

It has been a while since we  shared our stories about James...Eddie had been sharing current stories and I was going back to remember the early days. We do this to remember our journey but also to be an encouragement to others who walk this journey as well...

So, back to the early days...We were missionaries in Manila, Philippines when James was born.  We received our diagnosis...we went through what everyone else feels when they hear that their child has Down Syndrome. We began processing and dealing with the new reality and our grief over what James could not be. It just killed me to see the Formula or baby powder commercials on TV... it kind of pierced my heart that our little baby was not like them... and he was not healthy or well... he could not suck so he lost weight and went down to 4.8 pounds when he was 6 weeks old. We took him from doctor to doctor to find out what was wrong. They really didn’t know what to do to help him.  The director of our Mission Agency was keeping in touch with us as well as our home pastor.  They both urged us to come back to the States for help.  We carried James back on a pillow because he had lost all strength and was close to death.  We almost lost him several times.  We begged God to keep him alive... We arrived in Springfield, MO where my mother lived and we took him straight to the hospital.  It was amazing what they could do for him.  They were so sweet to him and they organized just what he needed.  A speech therapist taught him how to eat!  They worked with him for days and taught me how to feed our James...He still would have times of not being able to breathe and get choked so easily.  I begged God so many times to save our baby’s life. When he started to gain a little weight and to perk up a little... his diagnosis was no longer in the forefront... he was our “Sweet Baby James” and we were so in love with him.  I wanted to learn as much as I could to know how to help him be his best.

We learned about “early intervention” and how it can help all special needs children and their development.  We spoke with a developmental specialist and she spent a lot of time with us just educating us and letting us know what we needed to look for when we got back to Manila.  We bought books and started on that journey of learning more about this thing we had been afraid of for so long.  I never had met anyone with D.S. before we met our baby...so everything was new....We went back to Manila just hoping and praying for what we needed for James.  

When I look back to that time, I am still in awe of the way that God supplied exactly what James needed when it was time.  We learned about a new Developmental Specialist who had come back to Manila after her training in London.  She was great! She helped us find therapists and would evaluate him every 6 months.  Our physical therapist was great, but she could only see him once a month. Our occupational therapist was very good too, but she could only see us every three months, and back then, there was no speech therapist.  We asked God to help us with what we needed for James...to our surprise,the people who built  the very next house in our subdivision had an adult daughter who was a physical therapist and could see him every Saturday...was this a coincidence?  Then when we needed him to see an occupational therapist more often, I got word that there was a new missionary couple coming from Australia... and guess what she was! An occupational therapist!  She came to our home every week and James just loved her!  Well, we needed a speech therapist (and remember there was none to be found...) and Eddie came home from church one day telling me “Cindy, there is a therapy center going in across from our church... you ought to go check it out”  Well, yes... they had a speech therapist!  

It goes on... When James turned 2 and 1/2, our developmental specialist told us that this was a wonderful window for James to go to school.  She told me that there was a little school that would be just perfect for him but it was just so far away.  I asked her where is was... and to our surprise, it was in the adjoining subdivision... 3 minutes away!  In a city of 17 million people, where there are not a lot of resources for special needs kids, God was providing for our little guy!  I will never forget the day I interviewed the teacher “Teacher Pow” (short for Paula).  She told me that all her students came to her as non-verbal.  She said that she teaches them with everything she had, but she also believed in God’s power and she would lay hands on their heads and pray for God to help them speak...She said all her students were able to speak when they left her.  I could barely hold back the tears...of joy...of how God was so supernaturally providing what James needed... Can you imagine...God cared about our little one who almost didn’t make it. He rescued him, brought along doctors, therapists and a whole new set of people in the Philippines to take care of him...I am still in awe over that...                           This opened up a whole new world for us...a world where many families did not know what to do for their children. We got connected to the Down Syndrome Association in the Philippines and found out that they needed leaders for support groups.  So we started a support group for the eastern side of Manila.  We loved getting to know these families. We brought in therapists to speak, shared resources and tried to encourage and inspire them. It was so rewarding to see families that seemed so hopeless start to dream for their children again.  They all loved their children... they just were stuck in their grief.  I love how God helps us with our journey of grief.... I look at it this way.  We all have to go through this valley of grief... we visit several stations like shock, anger, being overwhelmed, sadness, disappointment as well as other feelings you feel when you face your new reality. It felt a bit familiar... it reminded me of when I had lost a dear loved one... and yet I got to keep James... my initial dreams for him had died... but his life was certainly worth living... he became such a joy...so precious... I realized as I got to each station in that valley of grief... I would experience it... process it with God ... feel the emotion, but I chose to not camp out at one of them... because I knew that if I authentically went through each one... asking for God’s grace, HE would lead me to a NEW HOPE and a NEW VISION for James.... yes he still had D.S., but he was also a darling little baby that would develop into such a great young man. The grief would be turned into joy.  We looked into book of James in the Bible where is says in James 1:3, “Consider it all joy when you ....

God was asking me to accept this baby by faith because only He knew what joy James would bring us... we had to believe (and not see) that God had this in His hands... He still could be trusted... He loved this baby and us... He wasn’t punishing us.  He was blessing us with this baby... We had no idea... what joy our James would bring...

Our New Reality..

Cindy's Post #3  


Our New Reality.. When Others Don’t Know What To Do or Say

As we made our way through our new reality, we continued to go to doctor’s offices, visit therapists, and find out what we could do to help our baby.  We had so much to learn in such a short period of time.  We were so grateful to the Regional Center  and DCO in Springfield, MO that taught us all about Early Intervention and what therapy to look for. They gave us a list of good books to read, and were so helpful and hopeful as they led us down our new path.  

Our friends and family were very supportive and kind as they learned to love James.  A few acquaintances had some responses to James’ diagnosis that were really made out of ignorance and just not knowing what to do with our new reality.  I will never forget the day that we were in a doctor’s office waiting for him to see our little guy... I got up to read something on the bulletin board that gave me some very wise counsel. The article talked about what to do when people don’t know how to respond to the fact that you have a special child.  Sometimes when you are out in public, people struggle to know what to do or how to talk to you.  I personally think they just have never met anyone with Down Syndrome or whatever disability they are facing.  They don’t know what we know. That our child is precious... that he is not primarily identified by his disability... he is James.

The author went on to say “Whenever you see that people don’t know what to do or say,  YOU model  it for them... that you love your child... reach down and give him a hug...or a kiss... and smile... let them know that you are ok with this.... you have grace for the situation and then smile at them.

When friends ask about your child or if they say the wrong things, just realize that they just don’t know... they have never had to deal with it.  So again, we, as parents need to model for them what to talk about.  They may keep saying “I’m so sorry, so sorry you are having to go through this...”  When this happens, accept their attempts to talk with you, however, you may need to lead the conversation.  Tell them something positive with regard to your child’s development and progress.  Providing a positive talking point helps to overcome the awkward moment and gives direction for a conversation. I remember saying “Well, this week, we have been learning all about Early Intervention and the therapists have been so kind and encouraging.  He is starting to gain a little weight, so we are very grateful.”  Not everyone has the grace or the capacity to know all the details that you are having to deal with... and that is ok.  We can show people with our spirit and actions how to deal with the news and the new reality.  If we are having a hard time with it that day, be honest with friends and say, “You know, we are having a hard time dealing with ___________, but we just love him so much.”

Ask your friends for prayer.  We don’t have to be up all the time, but we can’t expect people to know exactly what to do and say.  We need to extend grace to them... they don’t know YET what a great little baby you have...Just think, by seeing you with the special grace that you have for your child... you might have just changed their ideas about families with special needs children.

Overwhelmed with the Diagnosis...

Cindy's Post number 2

As I think about those early days with our James, I am so grateful for the people who helped us as we started the journey. I can remember the day that the doctor left our room after letting us know about James’ diagnosis. We were shocked and overwhelmed... not knowing what to do... what to think... how to take another breath...here was this precious baby boy...would he grow up to have a blank stare in his eyes? Would he not be able to communicate? Would he ever be able to have fun? What would our family think about him? How would people respond to him... or stay away from us... now that we had a special child. I recall Eddie and I saying “I guess we will never get to go to Disneyland with him.” I’m not sure why we thought that, but somehow, we must have thought the days of family fun were over...

We were somehow trying to absorb this news when I started thinking out loud “It must be my fault... I’m not a good mother... I yell at my children sometimes...I must have done something wrong.” I will never forget my friend Lora, who was with us at that moment taking my face in her hands and saying “Cindy, we’re not going to go there... it is not your fault.” She went on to just “be with us” that day, loving our baby, letting us process our feelings, and sometimes just being quiet. We moved from our initial feelings to concern for his failure to thrive because of his delay in his suck/swallow/breathe issues.

When we went back to the States and made it through the health crisis, a family with an 11 year son with D.S. came to visit us. I will never forget that day. As we got to know them, I listened to their story and took in everything about their son. I asked him which video he wanted to watch with our daughter, Coco. He chose one, sat and watched with her. I offered him some brownies and asked which one he wanted... the ones with m&ms or without. He confidently told me “I’ll take the m&m brownies.” In the next breath, he looked up at the light fixture and said “You got a light out.” I was quite impressed with this boy... my very first person to meet with Down Syndrome. He was pleasant, humorous, able to make choices, enjoyed watching the video, and seemed quite happy. His parents told us their story. I remember the Mom saying “If I knew what my son was going to be like now, I would never have cried...” They were so real with us with their joy and their challenges... At the end of our visit, I told Eddie “You know, this 11 year old boy reminds me of our other son who is about 6. I can live with that.” It really gave me a vision of what James could be like. We will always be grateful to the Pentecost family that helped us that day. It was our turning point. We then had an idea of what James could be like... of what we could look forward to. By the way, we did go to Disneyland with James and the rest of the family after all... he was thrilled to see Pooh and Tigger... a good time was had by all.

Early Days With James - By Cindy

Thinking back to those early days...

I got to meet the most precious new Mom and her baby with Down Syndrome this week, and it brought me back to those early days when our James was born... I loved holding this little guy and talking with his Mom as she shared her journey with me.

When James was born 15 years ago, we were just like everyone else...shocked, unprepared, and totally overwhelmed by our son’s diagnosis.

We started on this journey with a feeling of grief... grieving over our hopes and dreams for James...yet at the same time, we were absolutely falling in love with our sweet baby James. I remember those first few days... not knowing what to expect. We had never met a person with D.S.. I remember praying “God please help him to eventually be able to tell me what he needs and what makes him happy.”

We named him James before he was born with lots of hopes and dreams of the contribution he would make to this world. In our days following his birth, we finally turned to the book of James in the Bible... and found that passage that says “Consider it pure joy when you face trials of many kinds...” At that moment, I felt that God was saying “As I give you James, count it all joy now- You have no idea what joy this baby will bring you... trust me... you have followed me for many years... you can trust me on this... by faith...trust that this gift of James will bring much joy... it is part of my plan for you.” I remember feeling such a supernatural peace, grace and joy just flowed all over my soul... and I just settled in to loving and enjoying my baby. After all, he was more than anything- my baby. His D.S. was just part of who he was... he was precious...

As we were settling into our new reality, we realized that he was having trouble sucking.

We were in the Philippines as missionaries. We had good healthcare, however, we did not know anyone who could help us with James’ delay in his “suck/swallow/breath” issues. We took him home and 6 weeks later, he still couldn’t suck and was starving to death. We took him back to the States and immediately they started working with him at the hospital, teaching our little guy how to suck and swallow. It was a scary time for us in that during this 7 week time, his body was shutting down and he almost died so many times. We are so grateful to our doctor and to the staff at Cox Hospital in Springfield, Mo. who valued our tiny little baby, who did everything they could to save his life, and who understood what we were going through. The speech therapist taught him how to suck, and taught me how to help him. We were amazed at what they could do to help him. After he made it through the initial health crisis, they sent us to the Development Center of the Ozarks where they taught us all about Early Intervention. When James got back up to his birth weight, they let us go back to the Philippines. By this time, we were so in awe of how God had saved his life. The thought that kept coming to me was- “I am so grateful that James made it... I would rather have James with the Down Syndrome and all that means- than to have lost him....” After all, my baby was James first... darling baby boy... very loved...valued...precious... little survivor....and he just happened to have Down Syndrome....We were on a new road... a new journey... we were in a new club...one that no one chooses to join. However, we had no idea what joy our James would bring... By the way, my prayer that James could be able to let me know what he needs and what makes him happy is answered every day....We deal daily with the struggles, frustrations and challenges that come with D.S.. These realities do not take away the good times. James is a pretty happy boy and delights us regularly with his antics! My hope is that with our story, other families will be encouraged and that they would be able to see the joy and precious life that God has entrusted with them. We may have challenges... but we have a lot to look forward to!