- Jacob and Sam Phegley
Jacob and Sam Phegley were born on January 2, 2001. They were born after years of infertility and the loss of a baby in infancy just a year earlier. To say we floated through the first year of their life in absolute bliss would be an understatement. After waiting so long, we were overjoyed to have children in our home and we embraced every aspect of being parents.
It was in their second year of life that we began to notice some things that gave us cause for concern. After the 18 month mark, we realized they were not developing language like their peers, their motor skills were delayed….and they became harder to reach…harder to connect with. A word danced around in my head that I was still too afraid to say out loud…AUTISM.
Shortly after their second birthday, we saw a specialist who confirmed our concerns with a diagnosis, Autism Spectrum Disorder…both of them. No mother plans to have a special needs child and nothing prepares you for the moment that you know with certainty that nothing in life will ever be the same…or will ever match what your heart’s vision had seen for your and your children’s futures.
The next few years were a blur of adjusting to the new normal as we grieved the loss of what we thought we had. Playgroups and outings to the park were traded for endless hours of therapy and doctor appointments. I clearly remember at one point asking God “You have my whole heart….how could you let this happen to my babies” I will never forget his very clear answer “If I have your whole heart, then do this for me.” In the days, weeks, months and years that have followed, God has continually reminded me that they are HIS and He calls them beautiful. Jacob and Sam are “fearfully and wonderfully made” and God has plans for them…plans for “a hope and a future”.
Today, Jacob and Sam are thriving 13 year olds. Jacob loves sports, has friends and meaningful relationships with his family. He enjoys school, swimming and skiing. Sam loves art and music, playing jokes on people, and has found his own way to have meaningful relationships with others. When I look at them today knowing where we started, I cannot help but say “Many O Lord my God are the wonders you have done.”
With all of that said, being the parent of Special Needs Children can be exhausting, overwhelming, and isolating. I am so very thankful for organizations that seek to walk alongside families with Special Needs children. Friday Nite Friends is at the top of that list for me. A dear friend told me about Friday Nite Friends when Jacob and Sam were 5 and we immediately applied for the program. When we were accepted into the program, we knew by reputation that it would be good but we had no idea how amazing it would be. All four of our children absolutely love and look forward to their nights at Friday Nite Friends. Likewise, the evening is a gift to my husband and me. When you are a parent of a Special Kiddo, finding a babysitter who can meet the needs of your child can be difficult if not impossible. It is such a blessing to know that when Jacob and Sam are at Friday Nite Friends, they are loved, accepted, and celebrated for who they are and it brings me great peace knowing how happy they are to be there.
Prior to a diagnosis, my dreams for Jacob and Sam had been that their lives would be filled with joy and that they would find their passion and fulfillment doing whatever God called them to do. Today, I can stand in the certainty that those dreams have not been lost. They are instead being realized day by day albeit in accordance with His perfect plan. I am blessed to be their mother…to be a part of their incredible journey…and blessed to be able to say HE Makes Beautiful Things…He Makes all Things Beautiful. - Cole Skinner
We found out Cole had a heart defect when going in for a routine ultrasound during pregnancy. The cardiologist had delivered this kind of news before and knew to give us some time to let it sink in. She was very sweet and gave us a call a couple of weeks later to see if we had any questions. She told us what kind of heart defect she thought he had, but that would be confirmed after he was born. It was what she thought - tricuspid valve atresia. This is where the tricuspid valve doesn’t form and blood can’t flow normally through the heart and into the lungs for oxygen. Cole had surgery when he was 4 days old. He also had 2 other heart surgeries at 7 months and 7 years old. We didn’t realize until Cole was born that he had other issues going on and the heart defect was part of a syndrome. He had feeding difficulties too and other developmental delays. Cole had surgery to put in a feeding tube at 9 months old. After a few months we were allowed to feed him orally but he really didn’t take to it. He still has the feeding tube and probably always will. He likes a few foods, mostly snacks. Cole’s “syndrome” was not anything readily recognizable. We went to a geneticist when Cole was about 18 months old and the doctor suggested it was probably CHARGE Syndrome. CHARGE syndrome is a pattern of birth defects which occurs in about 1 in 10,000 births. It is a very complex syndrome involving extensive medical and physical difficulties that differ from child to child. Babies born with CHARGE often have life threatening heart defects and breathing problems. More info can be found at http://www.chargesyndrome.org/about-charge.asp. Besides the heart defect and feeding difficulties Cole has physical and mental developmental delays, is non-verbal and also has scoliosis.
As parents of a child with special needs, you feel as though your life took an unexpected turn from where you thought it was going. The things you worry about are a little different. There are constant health issues to worry about. There are lots of doctors. You know so much about medical terms and procedures that you really wish you didn’t have to learn about. There is constant concern about the future. You wonder how you’re going to save for retirement and save for a lifetime of care for your child. There are so many things to learn about – special needs trusts, what services you can apply for or you qualify for, what school works for your child, where to get the information you need, who can help you with all of this. We worry about doing as much as we can do to make sure Cole is the best he can be and learns as much as he is able to. There’s also a little guilt involved, thinking that you’re never doing quite as much as you should be. However, on the flip side of the worry and stress, you realize what’s really important in your life. You know your child is truly a special gift from God. You learn to enjoy the little things because the little things are sometimes really the big things. I get so much joy when I hear Cole laugh or see a big smile. Sometimes I’m amazed at the things he puts together, something I never would have thought about (like going from one toy to another because they’re playing the same song). You’re grateful for all the progress made, no matter how small the steps.
We’re also so grateful for the time Cole has spent at Friday Nite Friends. We have been coming to FNF for about 12 years now and have met so many wonderful people over the years. We know that Cole is so well taken care of. We can leave him and go to dinner or a movie and just get away and relax for awhile and know that we don’t have to worry. FNF has been so generous, from the Christmas parties and Christmas presents to anniversary dinners and sponsoring HEROES camp. I’m always so amazed at all the wonderful volunteers that are there every time Cole comes. Carol, all the staff and volunteers are such a blessing and we are so thankful and appreciative to be a part of Friday Nite Friends!! - MacFarling
In May 2003, little did we know our lives would be changed forever on January 5, 2004. My OBGYN told me I needed a level 2 sonogram because of my age and so off we went to see the perinatologist thinking nothing of it and so excited to know if we were having a boy or girl. After the joy of finding out it was a girl, she said she saw a few things in the sonogram that may point to her having Down syndrome. She then asked me if I wanted to schedule an amniocentesis and Brian and I replied, absolutely not. We would not put our baby at risk no matter what the circumstances. As we left her office all kinds of thoughts and fears came over me…Down syndrome? What was that? How would it effect my little girl? How could it affect us? So, of course, I came right home and started researching it. BIG mistake…it was information overload and none of it was good. Therefore, I decided to trust the Lord and try really hard not to worry about it.
When the big day finally arrived it was a typical morning of getting up and dressed for work. We had an appointment with the parinatologist and then off to work with another 2 weeks until delivery. Things don’t always go as planned. Abby decided to make her entrance into this world a bit early. While at the doctor’s office, she said, it was time to head to labor and delivery because my water had broken and I didn’t know it. After checking a few things she said that Abby’s thigh bone was measuring small. I said “what does that mean”. She replied, “well, she could have Down syndrome like we discussed or she could just be short like her Mommy and Daddy. Now let’s go over to labor and delivery and find out”. The second I walked out of the door it became real, I am going to have a child with Down syndrome. I cried and prayed all the way to labor and delivery.
It was a difficult delivery. Abby stopped breathing because the cord was wrapped around her neck and they had to use a vacuum to expedite the delivery. After Abby was born she was taken to ICU because she had some breathing and problems and was not getting enough oxygen. There they discovered she had pulmonary hypertension which can be fatal and there is no medication for it. She also had kidney back up and jaundice. Finally, after 3 weeks in the ICU she was discharged and came home. We had many follow up appointments with the urologist and cardiologist. We were discharged from the urologist when she was 3 months but our miracle came at 10 months when they did the EKG and her pulmonary hypertension was gone. The doctors were baffled and I told them we had lots of people praying for this sweet little thing. God gave her to us for a reason, she is a fighter, He was not ready to take her home yet and she was still destined for great things.
Probably one of my most vivid memories in the hospital was when the pediatrician came in the following morning. I remember him telling us that they were going to run tests but he was pretty certain that she did have Down syndrome. I asked him exactly what that meant. He said that she would develop a little slower and that she would need some extra help. I also asked him if she would have friends and if kids would like her. He said raising her would be hard and things that were said to her or about her might be harder for us than her because she would probably let a lot of things roll off her back. He said she may not have a lot of friends and may never get invited to a birthday party. Well, guess what, thankfully he was so WRONG! God is so faithful.
Today Abby is a smart, beautiful, thoughtful, and popular, yet stubborn, 10 year old red head! She is in fifth grade and attends Saigling Elementary in Plano. She loves school, church, her friends, swimming, Barbie’s, you tube, ballet and of course Frozen! Last year she received the Top Whale award at school. In order to receive this award, the students have to emulate certain behaviors and attitudes. It was a big honor and definitely well deserved! She does go to birthday parties and is even invited to a playdate now and then. Last year at her 10th birthday party everyone who was invited came! That speaks volumes to Abby but more so to the kind and accepting children the Lord has surrounded her with.
With that said we still have our daily struggles, like most. Even the littlest thing can be the biggest challenge… bath time, bed time, doctor visits, going to the store and sometimes just daily communication. It is so frustrating for her and us if she cannot communicate her thoughts, needs and wants. I sometimes feel like after school our live revolves around therapy. She does speech therapy, occupational therapy, music therapy and many doctor visits in-between. The day to day can often be tiring and draining. This is why Friday Nite Friends is such a wonderful blessing! We are promised in 1 Corinthians that the Lord will not let you be tempted beyond what you can bear. I hold steadfast to this verse daily!
We learned of Friday Nite Friends through a friend when Abby was just 3 months old. We have no family that lives here in the Dallas area and we had no idea how to go about finding a babysitter. Consequently, this program has allowed us to have date night when needed, pack if we were headed out of town, grocery shop when it had been a long week or just go home and do absolutely nothing and just rest with no little voices yelling Mommy or Daddy!
One of our favorite parts of the FNF program is that siblings are welcome too! Abby has a younger sister Molly, she is 9. When we say this week is Friday Nite Friends they both jump up and down screaming. Brian and I love the fact that we get to spend time together knowing our girls are having fun in a safe and Godly environment. Carol Brady and all the volunteers at FNF are such a blessing to our family. We can never thank them or Custer Road United Methodist Church enough for allowing us these wonderful 10 years in the program. Thank you from the bottom of our hearts! - Daniel T. Fleegar
We met in Moscow, and Luba dreamt of a family with and boy and girl growing up in America. Daniel was born in July of 2005 following a storybook pregnancy and a dreamlike first year. Like all new parents, Flu shots and vaccines were the customary steps as the regular routine in the family playbook. Which one, too much too soon, or whatever….Daniel’s life suddenly changed into a crying, lost child and could not talk at all. Even with his beautiful laugh we could still see the pain in his eyes. Sleeping issues, no eye contact, eating problems created nightmares for the whole family. His coping with the head pains will always make him heroic in my eyes forever.
At 15 months, we feared autism and our pediatrician said it was too early. We changed pediatricians! Our new doctor got us to ECI and in line for the Developmental Pediatrician who would “officially” diagnose our child. At 20 months, this doctor gave our child the “Severe, low function autism” Label and prescribed ABA and speech. Despite the deep shock and river of tears, Luba began her quest to cure Daniel. Though we knew this was not a short term endeavor, we both felt Daniel showed some slight improvement as we went to a 6 month follow up with the same Developmental Pediatrician. To the shock of both of us, she shook her head and told us he was definitely worse. She looked at Luba and said “you need to prepare yourself and it is a STRONG chance Daniel will be mentally retarded. Needless to say, it crushed Luba- and we decided that was our last visit there! We wanted to go to Cancun when Daniel was 2, and everyone just thought we needed time away from Daniel to relax. Problem just no one want to care for him- so we took him. Daniel was just fabulous and we even had people there comment how “cute and well behaved” Daniel was. We returned to the grind, pain, frustrations, and sleepless nights… when Luba met Judith and her son Andrew. We learned about a wonderful place who would actually watch over our angel for a whole evening! My wife probably went a year to Friday Night Friends before the “guilty” of leaving Daniel there even 30 minutes. Hard to believe, it has now been over 10 years with Friday Night Friends. Two things have never changed over all these years. One is that Luba and I drop him off hoping he will be happy (we know he is safe and in loving hands). We talk about him the whole time we eat, and can’t wait to see if he is smiling when we get there to pick him up. The other is we are always so thankful a church is truly his second home and a place he is loved and recognized as pretty fun and great boy. Gosh, we get spoiled too!
Of course, now he is starting to be a young man with a future ahead. How will he survive without us? Where will be his guidance? What kind of love will be in store for him? Just the three of us, but we know God has a plan. That is truly what Friday Night Friends reminds me… God will watch over Daniel with us! - Preston Coggins
Good Morning - my name is Christie Coggins and my son is Preston Coggins. He has been attending Friday NITE Friends for about 8 years. He had a traumatic brain injury when he was 2 months old. He was shaken by my boyfriend, at the time, on Christmas Day 2005. I went to the store to get tummy medication for him because he was sick. My life changed when I came back to my house to find an ambulance in front of my door. Little did I know, that the reason he was having tummy trouble was because he was shaken.
I had no idea that a person I trusted could do this to an infant. In the 2 months that he was with me on maternity leave, he ever left my sight. I made the unfortunate decision, to go to the store on Christmas Day 2005, instead of him, and I regret that decision every day. I could not believe it! My son was in an ambulance and I was in shock. When I got to the hospital, they had me see the Chaplin.
I told the Chaplin, “NO”. I would not see him. I refused. I could not accept speaking to the Chaplin at that time. He understood, was compassionate and let me know that he would be there for me if I needed him.
Preston was in the NICU for about 3 weeks. Investigations went on and I was cleared of abusing him. His abuser was convicted and only got probation for 10 years. He is free to this day and has a child of his own. I met him in court and gave him my impact statement. He did not even flinch or cry. No remorse. That is ok, because my son, Preston, is still here with me.
Since then, my son has been totally dependent on me, caregivers, and my family for all of his needs. He has Cerebral Palsy, is non-verbal, visual impairment, and is in a wheelchair. As his mother and primary caregiver, it is hard to find time for myself. Friday NITE Friends has given me the ability to take care of myself and make sure I can take care of him.
I appreciate the Christmas event as well. Even though Preston was shaken on Christmas day, I still want him to celebrate Christmas as any other child would. He might get scared about Santa’s beard at times, but he always has fun.
I have so many ornaments and treasures I put on my tree every year from Friday NITE Friends. They remind me of the compassion and love that has been bestowed upon us.
I am so grateful for Friday NITE Friends. Not only do I get a Friday out, I get to be a part of a great congregation and family that accepts us without judgement. Friday NITE Friends has welcomed us with open arms. It is a safe place where I can take my son and take a few hours for myself. I can trust the volunteers and Carol to take care of him.
Please, put yourself in time in time out and NEVER SHAKE a baby! Sincerely, Christie Coggins Preston Coggins’ mom - Sakzenian
My wife and I had a pretty picture-perfect life before our firstborn, Isaac. With a perfect pregnancy the 36th week, life was all anyone could ask for. That was until when they found issues with our soon-to-be-born baby boy. Isaac completely changed our lives. He's an incredible child, very funny, full of joy and laughter (the meaning of his name!) but caring for him is very draining. He demands attention non-stop. The one minute you don't watch him (as quick a run to the restroom), he gets into things he shouldn't, undresses, or tries to escape the house. He's growing and becoming a bigger challenge, as he still hits, bites, kicks.. so much so that not even his grandparents are able to watch them for my wife and I to have a date night. Friday Night Friends is so wonderful. We get to have a normal couple date night about once a month, and we treasure that night so much. My wife and I get to talk, have dinner, sometimes connect with friends we otherwise wouldn't be able to see. We are blessed tremendously with how well FNF cares for our kids, too. They find things that Isaac might like, and every time we come, they have new things to try, buying swings, balloons, shaving cream... anything mention that might make Isaac feel more at home while we are out. They don't just baby sit our kids, they shower them with love. We feel like they are our family. Afterall, they really are - that is the family of Christ. Thank you for your support to this wonderful ministry that, I am certain, has saved many marriages and continues to bless so many!
Aran, Camila, Isaac & Noah Sakzenian - Joni and Friends Family Retreat- Supported by Friday NITE Friends Our family was given a gift that will last a lifetime. A gift that we thought was never possible for our family. A gift that gave us memories that will last a lifetime. This gift was the opportunity to do something that most any other family does on a yearly basis. To some it may seem simple or even be a tradition but for us it was an answer to a prayer. We were gifted the experience to attend a Christian camp that caters to families with special needs. Looking in from the outside our children seem to be typical however with them both being on the autism spectrum we have our own obstacles, challenges and issues that made a traditional family camp unattainable. Being our first year to attend Joni and Friends we went in with wide eyes, open minded and ready for a fun filled week. As we came into camp they announced our family as we drove through a sea of volunteers, staff and counselors cheering for us while singing and dancing to music played by a DJ. At that moment I knew this was going to be an awesome experience. We were greeted with willing volunteers to carry our luggage to our room plus help us get unpacked and settled in. Then we took a tour of the camp grounds and facility to get a lay of the land, meet other families and enjoy cookies, they even had gluten free cookies :-), and soda. Seriously, is there any better way to start a vacation? The next three days were full of horseback riding, lake activities, hikes, messy games, pool time, slip and slide, hay rides, worship time and so much more. Our children were paired with their very own buddy called a Short Term Missionary (STM), that went with them from activity to activity starting at breakfast to dinner each night. These STM’s are the true definition of their name, missionary, as they pay their own way to camp, attend orientation, training and are at camp to not only serve our child but our entire family. It is extremely humbling to know a person has such a desire to serve others as Jesus taught us with their wonderful acts of kindness especially when most of the families pay for nurses, assistants and support to help care for their children on a daily basis. Furthermore, the STMs allow the parents to connect with each other and other families that can relate to the challenges of having a child with special needs. I can say we made lifelong friends over the weekend. Joni and Friends creates a spectacular balance between the children having fun activities in addition assuring the parents do as well along with giving precious down time. One evening the parents attended a fancy dinner on sight where all the volunteers and counselors catered to our every need. All the while the children were with their STMs for a night of fun and games. While speaking with some of the other parents this is a rarity for them as they have very little resources that allow them to go out on dates. The mothers were given a spa night however this was not just your typical spa night. We were also give the amazing gift of having our feet and hands washed and prayed over. As we entered the room the chairs were sat in a circle with candle and relaxing music playing. I immediately noticed all the other moms sitting very relaxed with their eyes closed and smiles on their face. We were escorted to a chair to where one of the many volunteers came to your feet and began to wash and massage them. At the same time, another volunteer offered to rub your shoulders and neck, it was a small piece of heaven. I began to melt into my chair feeling relaxed then the volunteer began to pray as she washed my feet, asking God to guide each step of my journey. After that she washed and massaged my hands praying that they would love, protect and care for the precious children God graced our lives with. At that moment tears of gratitude streamed down my face. In all the years of raising my children I have never felt a greater presence of God. and my heart was overwhelmed. To have someone take each foot and hand into their own hands to wash them then pray for each step brought me to the moment when Jesus washed the disciple’s feet. (John 13:4-17) Is this how they felt too? This was spiritually humbling to have someone pray for the guidance of my hands and feet while raising God’s special children. The highlight of the trip was the talent show on the last night where any and all acts were accepted. It was a moving plus best 3 hours spent with fellow families. To better explain the experience this is my post on Facebook, ” There is nothing more humbling than watching these sweet, precious, gifts from God show their heart and soul on stage before all with courage beyond imaginable. We watched an adult with Down Syndrome with minimal verbal skills sing “I Can Only Imagine”, then a young girl in a wheel chair do a cheer, toddlers with various obstacles perform, “Jesus Loves Me”, a blind young man and his buddy sing, “Jesus Take the Wheel” and so many more. There was so much talent that I cannot tell you all of them but know for each one of these parents this was their child’s touchdown, goal scoring win, first place prize, A+ on a test, college acceptance letter and so many other things. This was *their* moment to shine, take 100s of photos for Facebook and chance to brag about, “Guess what my child did tonight?!?” My eyes feel with tears and my spirit is full by this. The scripture for the entire camp this week has been Matthew 19:26 and Lord do I believe it more now than ever!! Amen. Matthew 19:26 But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.” The gift we received was truly a gift because we did learn and now know that “With man this is impossible, but with God all things are possible.”
- Weiss
Our family’s story started out as most typical families. After my husband and I had been married for several years, we felt ready to start a family. We were blessed with our son, Eric, almost exactly a year later! I always wanted two children - about 3 years apart so that they could be in high school and maybe even college together. Amazingly, when Eric was 2, just as I planned, we were pregnant with another child - due on Eric’s 3rd birthday! How perfectly everything was going – just as we had planned!
But God had other plans, and we lost that child early in the pregnancy. While sad, we would just try again. Unfortunately, we could not seem to get pregnant again, even with the help of an infertility specialist. This was an incredibly emotional time as we watched other families grow easily and quickly. Finally, after a couple of years, I got on my knees and prayed that God would help me truly seek His will for our lives. If we were to be a family with just one child, then help us be the best parents for him.
That was an amazing moment of peace for me as I felt like I could finally let the pain go. I was able to start attending our friend’s baby showers again and seeing their babies – and rejoicing with them. Three months after giving my heartache to God, I found out I was pregnant – even after the infertility specialist telling me it would be impossible for me to become naturally pregnant again! The pregnancy was difficult throughout, but even with all the testing and many sonograms to monitor the baby’s health, the baby girl we found out we were having seemed to be doing just fine! During the pregnancy, a friend gave us a small wall placard with Hebrews 11:1 on it – “Faith is confidence in what we hope for and assurance about what we do not see.” I knew that God was taking us on this journey for a reason – and our little girl would be named Emily Faith.
Emily arrived a couple weeks ahead of schedule weighing a very healthy 8 and ½ pounds, but with Down syndrome - a surprise to us all, even after the careful monitoring and medical appointments. With her birth, came initial feelings of sorrow for all that we had imagined for her and for us. However, we were blessed to be surrounded by church friends, family and others who provided us with encouragement and direction toward programs that could help our family and Emily thrive. One of those programs was Friday Nite Friends (FNF).
I was nervous about leaving Emily with anyone outside of our family. Then we met Carol Brady Houston, FNF Director, to discuss the possibility of Emily attending FNF. Immediately, we were comfortable with leaving our nine-month old Emily in the care of this wonderful woman and the program she led. As with many individuals with Down syndrome, we were dealing with Emily’s various medical needs, including future open heart surgery, but always knew the staff at FNF would be prepared to care for Emily. That comfort allowed my husband and me to have a true night off.
After attending FNF for just a few months, we got another surprise - Eric and Emily had a little sister on the way, as well. (So much for the doctors’ thoughts on our family and having future children!) Elyssa began attending FNF a few months after being born. We experienced the blessing of all three of our children attending FNF. Eric enjoyed hanging out with the volunteers, who would play games with him that night, giving him a break from his sisters! Emily and Elyssa adored playing, drawing, and watching movies with the volunteers in their room! Over time, they also became friends with other girls with special needs and their siblings who attended the same night, and looked forward to being reunited throughout the year to play with them! Over time, Eric moved from attending FNF to volunteering at FNF through Young Men’s Service League. Now in college, he still looks back on FNF as much as a respite for him as for his parents.
Emily is now a sassy, energetic teenager who loves art, singing, cooking, and hanging out with friends. Emily often asks if it is Friday Nite Friends week because she knows it is a time when she can hang out with typical peers who want to love on her.
Friday Nite Friends is a truly special place, and we will be always be thankful for the part that it has played in our lives! - Friday NITE Friends is a Marriage Ministry at Heart By Lynn Ellis Kate was born on December 23, 2006. The Christmas spirit was in the air. In the labor and delivery room, the nurses and doctors were rushing around talking about what gifts they still need to buy from their lists. What a special Christmas this was going to be. We were so excited to meet our first born! After her delivery, the doctor suddenly called for more help. Teams of nurses and doctors descended on Baby Kate. Within a few minutes the doctor came over to my husband and I and told us that “unfortunately” our daughter has Down syndrome. She then quickly left us with this life-altering news. Our heads were spinning and our hearts were heavy with the uncertain future. Depression descended on me like a heavy blanket. My spiritual life was in disarray. I had so many questions and few answers. I didn’t think that God was with us. Fortunately, my husband was our rock. He was able to keep the family going and get help for both Kate and me. He proved to be the hand of God that both Kate and I desperately needed. One of the main reasons for success in our “special needs” family is a solid marriage. David is my safe harbor and best friend. Our marriage provides a solid foundation. But like any good relationship, the marriage must be tended to as well as the children. That’s where Friday NITE Friends comes in. We were attending another church but found out about Custer Road and this ministry through a friend. I was looking for some relief but I found much more than that. Friday NITE Friends got us into the discipline of making time for our marriage. It gives us regularly scheduled time to talk about serious things and time to laugh and lighten up. It makes us a stronger couple and better parents. Friday NITE Friends is a respite for the kids too. Kate and her little sister, Olivia, love to come and play and be spoiled by the amazing volunteers. It is a welcome break for Kate from the demands of school and therapy. In addition, FNF sponsored Kate to attend H.E.R.O.E.S. camp, which is a summer camp for children with special needs. We would have never known about this camp and the joy it is to our family if it hadn’t been for Carol Brady and Friday NITE Friends. Friday Nite Friends is a blessing to our family and to the other families that we have met. In addition, we also found our church home that helped with my spiritual questions and continues to grow our faith. Having a special needs child is hard on a marriage. Several studies put the divorce rate of couples with special needs children at 80%. Time for the relationship and time for yourself are the first to go.
- Iveners
We are the Iveners. We are blessed with three children. Our oldest is Danielle and she was born with Cornelia de Lange Syndrome. She was born small at just 3 pounds 13 ounces at full term. We spent her first 11 weeks in the NICU in Plano and the next 3 months in and out of Children’s Hospital when the only one was located downtown. Her major disabilities are high tone which results in her inability to walk, GI issues which includes G-tube feedings, daily medications, and comprehension and communication delays. She has shown us both the complete rainbow of emotions you can have when you discover you are bringing another human into the world.
Randy and I, through the early years, faced many of the mountains alone. We had moved here with little family close by. It wasn't until our youngest was born that we discovered Friday NITE Friends. It was like discovering a light at the end of a dark hallway. It has given us not only the obvious, a night out with your partner to relax and enjoy, knowing your responsibility is covered for a few hours. It also has given us the not so obvious. We have found a church home that has supported us and our children thru multiple life events. Every time we have been in the hospital I have phone calls and visits and offers of unconditional support. People who truly love and care for that which you hold as precious. I have been given advice and ideas which have proven to truly enhance Danielle's daily life through the nurses and parents we have met. It gives you someone to share news and stories that truly understand what you go through on a daily basis.
This ministry brought us to our church home, reminded us what we enjoyed about each other in our 8 hours a month, and gives our kids a fun place where being Danielle's siblings is a good thing. I adore Carol, I adore the nurses, and I adore the volunteers who bless us every week to make this program work. FNF gives families a chance, in an adventure that runs the gamut of emotions, sometimes in the same day.
Thank you, Kathryn, Randy, Danielle, Nicole and Zachary Ivener - Jayme Ellis Jayme was born March 29th, 2002, the youngest of our 4 children, she was a big surprise, in more ways than we bargained for. At first look she appeared normal, and then I noticed she wasn’t hitting any milestones as a baby. It took me months to get a doctor to listen to me. We discovered she had hearing issues, which was corrected with surgery. Then the doctor told us she had hypothyroidism, low muscle tone, weak suck, was considered developmentally delayed & such we enrolled her in First Steps, an early intervention program. Jayme received OT, PT, Speech therapies, & developmental intervention. We were still hopeful something could be done to correct her issues. Then the seizures started, so did many more doctor visits,& ambulance rides, hospital stays because of many seizures over 20 minutes. It took lots of trials of various medications to get the ones that would control her seizures. We still needed some answers to why was this happening, what was wrong with her? We have undergone genetic testing in 3 states, with no formal diagnosis, & to this day we continue to see multiple doctors, in hope of getting a more specific diagnosis/or treatment plan. Jayme has undergone MRI’s, CT scans, EEG’s, spinal taps, & countless labs to possibly get any answers, or a diagnosis that would clue us in to what was wrong, & what could be done for her. The closest we’ve come to a diagnosis is that she has a congenital brain malformation, epilepsy, severe intellectual disability, physical limitations, and sensory issues on autism spectrum, very limited communication tools. And without a diagnosis we cannot tap into the many resources & support groups that are available for other families of special needs children. Jayme is 15, still in diapers, & is non verbal. She is on quite a few medications to control the seizures, also on some for her behavior issues we are now encountering, not to mention some for her sleep which is erratic, and doesn’t match the norm. These medications don’t always work well, & we are often up during the night, and sometimes her emotional outbursts occur at inopportune times, like when I am driving, for these reasons we unable to do activities as a family, and I spend most of my time at home with her, when she is not in school. Jayme does not like to go to the store, or the park, zoo, community pool, or any activity which is loud, crowded, or outside, these present more challenges so I am limited to when I can grocery shop & run errands. Our daily life presents challenges, but also joys. She is so adored by her siblings, they say she was given to us to teach them & their friends about being kind, having patience, & not to be scared of these types of children. Her siblings are amazing with her, you can see the love and admiration from both sides and this warms our hearts. We are very thankful for them! Jayme has good & bad days, she is moody, has bouts of aggressive behavior, crying, & not wanting to cooperate with us. The doctor thinks this will only get worse as she gets older. These are tough days, because you feel helpless, she doesn’t want to be hugged or soothed like a typical child, she has to get over it her way. It is frustrating because she cannot tell us what’s wrong, or if she is in pain, if she isn’t feeling well. We are helpless. Jayme doesn’t play with toys, she prefers, her Dora pillows, loves her music on the IPad, loves to watch Dora, The Wiggles, & Doodlbops, & she loves hockey, as this is the one family event we can do, because she enjoys it so much, we try & go to 1-2 games a season with her. We are so thankful for Friday nite friends. We have been going for 3 years now, it is such a blessing to know Jayme is well cared for & having fun. She always finds a boy to stalk!, which is very entertaining. We relish the break we get with FNF! We get no assistance from the government, so this is only respite that we have, so we are thrilled to be able to go to FNF!! Carol & her staff our top notch, it is such a great feeling for us when they see Jayme come in & you see smiles from Jayme to the volunteers, this is huge!! I look forward to this more than you can imagine, It lets me spend some quality time with either my husband or my other 3 children. The average person has no idea how lucky they are to be out with family or at an event and not have the unpredictable interruptions of a teenage special needs child. We are very thankful for the opportunity to attend FNF!!
- Hudson Schuler Candice discovered she was pregnant after eating spicy hot Indian food in Richardson when she was complaining of stomach pains we went to the ER and she discovered she was pregnant. Several weeks later we went to her first OBGYN appointment and everything went well. A few weeks later we went for the first ultrasound appointment and everything was good. The second ultrasound they discovered something they considered abnormal and referred Candice to a perinatalogist. This is a doctor that assesses and monitors high risk pregnancies. There were more ultrasounds and more tests and an amniocentesis. This is chromosomal tests abnormalities in the embryonic sack that confirms 100 percent for things such as downs syndrome. This was the point that it was confirmed that our child was going to have downs syndrome. This was also the point that it was confirmed the baby was coming to be confirmed to have congenital heart disease as we were referred to a cardiologist. They type of heart disease is called atrioventricular canal defect which is basically holes in the heart ion both the upper and lower chambers of the heart. At the time these are the questions my mind:
- Will my child be able to eat?
- Will my child be on a feeding tube?
- Will my child be healthy?
- Will my child have cancer (kids with down syndrome have increased risk of leukemia)?
- Will my child survive open heart surgery?
- Will my child have a normal life?
- Why me?
- What was the future going to look like? …
- 1 out of every 700 babies born each year have downs syndrome
- Downs syndrome increases with moms age, but most are born to moms under age of 35
- Increased risks for congenital heart disease, double risk of leukemia, hearing problems, Alzheimer’s, and many other diseases.
