Finding Happiness and Joy

The Unexpected

For Gwen and her husband, there was no cause for concern while starting their family.  They had one boy, born typically. Gwen’s tests and scans all came back normal during her second pregnancy as well.  However, when Claire was born, it was apparent something was wrong.

Gwen recalls, “There was no reason to believe anything was going to happen.  I had a pretty uneventful labor, and she was born, and instantly everyone freaked out…they were pretty concerned and called in all the specialists to give her a thorough exam.”

“It Happened Again”

Doctors were unable to find the cause of Claire’s microcephaly and assured Gwen and her husband that there was a 25% chance of it happening again.  Confident it wouldn’t happen again, they got pregnant. 

At first all of the scans came back normal.  It wasn’t until she was 22 weeks pregnant there started being concerns.  When Gwen was 26 weeks along, they confirmed microcephaly for Lola, her unborn child.  Claire had this to say about it, “I don’t know if I’ve cried as much in my whole life as I did those 24 hours after Lola was diagnosed.  It just felt so unfair to have to go through it again..we really, truly thought we had a 75% chance or greater that everything would be fine.”

Choosing Life

Even though her obstetrician didn’t push for termination of her pregnancy, he encouraged Gwen to look at all her options.  Gwen recalled what happened, “I just remember going back to my OB who said, ‘you guys have been through an awful lot. Look Gwen, you have options, and I’m not going to judge you guys whichever option you take, but I would encourage you to check out every option.’…and I did exactly what he said.”

Gwen did her research.  She talked with people who had been through similar situations, visited websites, and read testimonials.  She said the following, “Who am I to play God? I was given this child for a reason; why am I to change this path?”

She chose life! A decision to this day she would choose over and over again.

Finding the Reason

It had taken years to find the reason behind Claire and Lola’s microcephaly.  After sending blood into different research hospitals, they finally had a definitive answer.  Her daughters have Asparagine Synthetase Deficiency or ASNS.  

Since getting a diagnosis, Gwen has created a Facebook page.  This page has helped other parents connect and find support in each other. Gwen had this to say, “It has been really neat to connect with these other families and see the similarities..How nice is it to know another family who understands what we are going through.”

Sleep is Hard

When asked what some of the challenges for Claire and Lola are Gwen mentioned a few things.  The first being the ability to control the girls’ seizures and the other is sleep. “I can’t say that nighttime is normal because they don’t sleep steadily.” Gwen said.  Lola requires constant supervision while sleeping. Usually there is a nurse who stays with her to help monitor her sleep and seizure activity. 

“Typically Atypical”  Life with Medically Complex Children

“There is nothing typical about any of my days, nor are any two days the same..the tricky part is we have PT, OT, speak technology and we have a vision therapist who comes and two teachers who come, so that’s like seven people who are trying to come Monday-Friday every single day.”

“We try to squeeze stuff in for our son.  A lot of times in the evenings he’ll have basketball games or practices, or we go with him to the gym..we try to have as much normalcy for him as we can.  We’ve always tried to do that. We are a pretty close knit family; we just like spending time together.” Gwen said.

“Life is Special and Perfect and Wonderful Exactly the Way it Is”

Gwen had some great advice when asked what she would say to a parent facing a similar diagnosis. “It’s scary as hell, I’m not gonna lie…I wish someone would have told me that back then, that I could still be happy, and that I could still find joy in the life that I had”

“I just wish that somebody had told me in the beginning..that life is special and perfect and wonderful exactly the way it is. Having these kids and thinking outside the box and not doing things exactly the way that you would with a typical child is basically upping your mommy game; it’s making you a better person, making you stronger, uniting your family… I just really want people to know that they can do it and that they just need to believe and love and find joy in every single day.”

The post Gwen: Asparagine Synthetase Deficiency appeared first on Orangesocks.org.

Growing up different

Noticing your sisters are different

At three-and-a-half years old, Kellie wasn’t too aware her twin sisters were born different.  Growing up she said, “I don’t really remember the early part of their life..I don’t really recall my mom even being pregnant.”

At some point Kellie realized her sisters were different. It occurred to her as her friends would come over and ask several questions about them.  Kellie recalled, “I had lots of little playmates who would come to the house, and they were fascinated by my sisters. It was always an interesting conversation.  They always had questions, but it didn’t really affect who came here.”

Wishing it was different 

Even though she loves her sisters, Kellie struggled with the lack of normalcy her sisters brought into her life.  She said, “I remember thinking to myself that I wish I had sisters who could share my clothes later on in life. I wished I didn’t have the responsibility that came with it”

While her friends and their families were able to go on vacation, life was a little more complicated for Kellie.  Her sisters’ condition limited their ability to travel and do normal everyday activities. When talking about her mom, she said, “It’s not like she could just pick up and leave or run somewhere. There was that and then the vacationing stuff.”

Impact of having siblings with a disability

Even though Kellie had some struggles growing up with her siblings, their lives had impacted Kellie for good.  Kellie said, “Later in life, I chose some opportunities to be in classrooms with individuals with disabilities through the school district and then later on becoming a nurse, so i guess it all just led me there.”

Using a magic wand to change your sisters

Kellie was candid in her response to the question, ‘If you could have waved a magic wand, would you have changed anything about your life?’.  Kellie said, “I would always say that yes, I wish I would have been able to have them as normal sisters because I missed out on a lot of that part.  I was an only child, so I didn’t have that interaction of the fighting, and I guess it was a good thing too.”

She added, “I always wished I could and always wished I had that part of someone to argue with , someone to blame something on, to chat with and tell secrets with.  I didn’t get that.”

“Love them, love them, love them”

Even though Kellie wished a few things were different with her sisters, she also recognized what they taught her.  She said, “What they taught me in being with them and being able to care for them is incomparable from what another sibling would get from another sibling.”

She added, “Love them, love them, love them, and be proud of them and excited to introduce them to people.”

Kellie encouraged siblings of individuals with disabilities to talk about them.  Introduce them to people and share what disabilities they have. “So the more people know what’s going on or what they have or why they are acting this way, then they don’t tend to be as afraid.”

The post Kellie: Spastic Quadriplegic Cerebral Palsy appeared first on Orangesocks.org.

Twins with Spastic Quadriplegic Cerebral Palsy

Twin girls started having seizures

Ann recounted the night Kaye and Karen were born.  She said, “They were just beautiful. They were the talk of the hospital that night.  When my husband was there, we were feeding them , and they acted like they were gagging on the milk.”  They called the nurse in who took them into the nursery for observation.  

While in the nursery, the twins had a seizure and were transferred to the NICU.  The following morning it was apparent that the twins had something more going on with them.  

Getting a definitive diagnosis

At about three-months-old Kaye and Karen received their official diagnosis of spastic quadriplegic cerebral palsy.  The doctor who gave the diagnosis strongly encouraged Ann to place them in an institution and forget that they were ever born.

Ann quickly said, “I literally came unglued and told him that the Lord had given me these two babies and they were my responsibility, and that I was not going to put them away, and that they were mine and I was going to do whatever I had to do to take care of them.”

Crushing doctors’ expectations

Ann was told that at one point that her girls wouldn’t live past the age of one, then three, then five, then eight.  After growing tired of hearing her girls were going to die, Ann told the doctor, “Look, they are going to be here as long as God wants them to be here, so I don’t want anybody telling me they aren’t going to make it through this because i am going to fight tooth and nail for their lives here on this earth.”

Kaye and Karen proved the doctors’ wrong everyday.  Karen and Kaye have lived for 41 years. Sadly, two months ago, Kaye passed away from medical complications following a broken bone. 

Fighting for children with disabilities

There were several things that Ann did to help ensure Kaye and Karen stayed healthy.  Ann shared, “Little Kaye was always my respiratory one. It seemed like she always contracted anything that anybody brought through the door, so we had to make sure that we put signs up saying ‘If you’re sick, please do not come in.’ 

Another way Ann fought for Kaye and Karen was pushing to get a feeding tube for them.  Both girls were able to eat by mouth. However, their diagnosis made it very difficult for them to chew and swallow.  Ann said, “After we had the feeding tube put in, she just thrived”

Saying goodbye to your child

“With little Kaye, one morning I went to pick her up to brush her teeth and give her a drink, and her little arm broke. We had to take her to the emergency room, and they would not touch her because her little bones were so fragile and porous..so so ended up with a blood clot that came from the arm into the lungs and that’s finally what took her.”  Ann said.

Spastic quadriplegic cerebral palsy affects every aspect the body.  Both Kaye and Karen were in wheelchairs their entire life and were unable to put weight on their legs and arms.  This caused Kaye’s bones to become fragile.

The effects of raising a child with special needs on your family

Ann has an older daughter named Kellie.  We interviewed her and can check it out here.  Ann shared how having Kaye and Karen impacted Kellie’s life.  She said, “My parents basically raised my oldest daughter for a while.  I just couldn’t give her the attention that she needed, and she loved being with grandma and grandpa.”

She also spoke of her husband saying, “..while he loved them dearly and did anything he could possibly do for them, he didn’t realize the blessing they were to him until later on in life.”

Contact the state immediately to receive services

Kaye and Karen were total care, this means that they required assistance in every aspect of their life.  Because of this, Ann advised parents, “I think my first advice would be to contact the state and let them know what you’ve got, and get on their waiting list so that you can get support.”

Ann was able to receive support from the state which allowed Kaye and Karen to remain in their home their entire lives.  She said, “You just can’t do it by yourself. We have so appreciated the help that we have received from the state.”

Final thoughts

When she was asked if she had any final thoughts, Ann wanted to share, “By having them, you have more compassion and more acceptance of people who don’t walk like me or talk like me.  I’ve truly been blessed with them and because of them.”

The post Ann: Twins with Spastic Quadriplegic Cerebral Palsy appeared first on Orangesocks.org.

The Impact of One Person

Finding out your child has multiple diagnoses

When Farah was six months old, she was officially diagnosed with cerebral palsy and cognitive impairment with a seizure disorder.  Connie said, “I saw them much earlier than anyone else sis as a mother..she was having seizures.”

Describing receiving a diagnosis as “one of the darkest days of my life” Connie was mourning the life she thought Farah would have.  At first she struggled to accept that her daughter was going to be different. Connie was able to come to terms with Farah’s diagnosis and now says that Farah is the greatest thing to happen to her. 

As usual, doctors from this time era, recommended that Connie put Farah in an institution.  They felt like if Connie’s family was going to experience life as they should, they needed to institutionalize her.  Connie said, “..we couldn’t; she’s our daughter and our little angel, and I would never put her under someone else’s care”.

She requires total-care

“Farah is what we call ‘total-care’.  She’s like an infant, she depends on us for everything. We have to bathe her and feed her..you have to worry about her water intake, whether she is hot or cold, just everything.  You have to become aware of her needs. She cannot talk; she’s not vocal, so you have to learn to pick up signals from her.” Connie said.

There are varying degrees in severity with cerebral palsy.  Farah is more severely affected in the fact that she is total-care, non-verbal and is in a wheelchair.  Cerebral palsy affects your ability to control your muscles due to abnormal brain development.

The simple joys of having a child with a disability

“Just a smile fills your heart because it’s such an innocent smile.  You learn to appreciate all kinds of little things, and I think it has drawn our family a lot closer.” Connie said.  Farah was fortunate enough to live close to her grandparents. Connie described her dad as, “He was an old farmer, and he was very gruff and rough.”

Despite this, he was very gentle and loving to Farah.  Connie said, “He was darling with her. He would come over..and every morning take her for a ride in his wheelbarrow, and it brought our family closer together.” 

To keep the rest of her family in the loop, Connie has a Facebook page for Farah.  “My other siblings and their children..everybody follows her on Facebook. They are all interested, and no matter what’s happened to the people as they’ve gone their different ways, they all check in on Farah.  They don’t check in for anyone else, but they all know what Farah is doing, so Farah has drawn our family and extended family as well, together. I don’t think anyone else could have.”

Impact of Farah on the community

Connie shared a touching example of the positive impact that Farah has had on her community.  She said, “We had a birthday party for her when she was 40..we had 300 people show up in the rain to commemorate that birthday, coming together with the community and friends to tell us stories of how she has influenced their lives for it.  It was a marvelous experience, something that we weren’t expecting.”

Connie has wondered why Farah is still on this earth when she is suffering.  She has come to the conclusion that she is here for the betterment of everyone around her.  Her family, friends and the community.

Having a child with a disability is a great accomplishment

When asked to share her advice, Connie said, “I would say number one is to look at this human being as truly one of the biggest and best accomplishments you will make in your life.  I think that you will grow more by taking care of this little child in ways that there’s no other way that you could grow.”

There are three of four people who have helped Connie in taking care of Farah.  To their surprise they too had a child with a disability. They later told Connie, “We knew that we could do this because your family has done so well, and because we can see the light and the brightness that she brings into your home.”

The post Connie: Cerebral Palsy appeared first on Orangesocks.org.

Congenital Virus Causes Disability 

Nine-month-old not reaching milestones

Tori recalls when Lana was nine months old.  She said, “..she hadn’t sat up or rolled over or anything. That’s when we realized this is more than just her being a really chill baby.”  After seeing their pediatrician, they were referred to Primary Children’s Hospital. They met with a pediatric developmental specialist who suggested they run a few tests.

After an MRI, the doctor proposed two possible diagnoses.  One, a very rare genetic mutation that occurs only in people with middle eastern descent and the other was CMV.  Neither Tori nor Matt have middle eastern descent, so Lana was given the diagnosis of cerebral palsy caused by congenital CMV.

What is CMV?

CMV or cytomegalovirus is similar to the common cold.  Most people will contract CMV by the time they are 40. It rarely causes issues for people who are healthy.  In Tori’s case, she contracted CMV while pregnant with Lana. CMV was passed to Lana which resulted in her having cerebral palsy.

The most common symptoms of congenital CMV are hearing loss, vision loss, developmental delay, and cerebral palsy. If you are pregnant, a great way to limit the exposure of an unborn baby to the effects of CMV  is to practice frequent hand washing, and not sharing drinks with younger children who are notorious for being carriers. 

Cerebral palsy from CMV

Tori explained how Lana is affected from her diagnosis.  She said, “She has problems with eating and speech. She doesn’t talk..along with those is the doctor’s diagnosis of failure to thrive.  She has slight scoliosis because of her hips.”

When Lana was born she was described as “pretty much your perfect, healthy, little tiny baby.”  For her, her problems are related to walking, talking, and eating. Tori said, “..she’s actually quite intelligent.  Her mental capabilities don’t really match her physical ones.”

Challenges in raising a child with cerebral palsy

Matt shared some of the things he finds hard in caring for Lana.  He said, “I’m not usually around very much..so I can’t really do much to help throughout the day.  I get home pretty late, so usually the weekends are when I try to do as much as I can to help out with her physical therapies and just making sure she knows that even though I’m not home very much, I still love her.”

For Tori, her challenges are seeing Lana struggle with something.  She said, “Dinner time is probably my least favorite time; trying to get her to eat food and put on weight is a struggle. I guess I would say the hardest thing is wondering how people are going to treat her.”

Advice for others

Matt shared his best advice for parents. “..not to treat her any differently than any baby..just love her as much as you can and to help her try to understand that even though she is different, she is still a little kid and still can grow up knowing how much she is loved.”

Tori said for her, an avenue that helped her was to connect with other parents through a CMV Facebook page. She said, “..it’s great, because you can ask questions and you know people aren’t going to make you feel dumb; they will answer your questions.” She also added to not stress too much and just enjoy your child, love them and make memories with them. 

Both Tori and Matt agreed that it’s important to celebrate the little milestones.  “Whatever they do, you make it a big deal, because it is a big deal.” Tori said. Like most parents of children with disabilities, Tori and Matt recognize the amount of work required to reach those milestones. Something they said they use as an opportunity to turn into a party to celebrate!

The post Tori and Matt: Cerebral Palsy due to CMV appeared first on Orangesocks.org.

Never Giving Up

10-month-old missing milestones

Ann arranged for a photographer to come into her home to take pictures of her 10-month-old daughter.  This was the first time she really paid attention to what Krissy was able to do.  

The photographer wanted Krissy to do various things during the photoshoot.  To which Ann said, “She can’t do that.”. The photographer was shocked and mentioned that all children her age can do those things.  This is when Ann first started worrying about where Krissy was developmentally.

When her husband arrived home after an assignment in the military, she asked him to make arrangements for Krissy’s one-year checkup early.  Their pediatrician was also their bishop in their church. He replied to the request of an early checkup saying, “I’ve been noticing her at church.  I’m glad you called.” That immediately made Ann think something was wrong. 

Polar opposite medical recommendations

The time they lived in Illinois when Krissy’s school mentioned to Ann that they thought Krissy was having seizures.  Ann hadn’t noticed any but decided to take her to be evaluated. The doctor there said what Ann described as, “..the one who gave me the best thing in my whole life.”

He told her, “I want you to love this little girl.  She is beautiful, so i want you to take her home and love her.  She is going to bring joy to your life as she grows. She is going to be harder to take care of, but your body will adapt to it; you will know exactly what to do for her.  Just love her and keep her home.”  

Later on, Ann wanted to know what more she could do for Krissy.  She took her to another doctor who gave Ann horrible advice. He said, “I think you need to have a life with your husband.  Put your daughter in a state school and leave her there, and you and your husband enjoy your life together.”

Ann responded, “I don’t think I will come back here again, and I am not going to recommend you to anyone else.” Ann decided she was going to keep doing what she had already been doing.  She was going to love Krissy and let her bring joy into her life.

Ataxic cerebral palsy 

Since Ann’s husband was in the military they moved around several times.  When they moved to Tacoma, Washington, Krissy was officially diagnosed with ataxic cerebral palsy with a seizure disorder.  

Ataxic cerebral palsy is the least common form of cerebral palsy.  It is characterized by clumsy uncoordinated movements. Krissy was total care, she was in a wheelchair and relied on Ann to perform everyday tasks for her.  

Advocating for your child

It wasn’t until a teacher asked Ann what her plans for Krissy were after high-school that Ann realized there were no options.  Ann had chosen to keep Krissy home, which meant there wasn’t a post high-school program in place for her.  

Ann decided to do something about it.  She put a flyer in each of the kid’s fruit bags at Krissy’s school inviting other parents to come to her house for a meeting.  Ann said, “I got all these phone calls from people saying that they wanted to come to this meeting and I thought, ‘Oh boy, now I’ve got to plan a meeting!”’

Ann did her research and was able to receive guidance for how to create a plan and how to get funding for their post high-school program.  With the other moms in her group, they started lobbying for their children. 

“Never, never, never give up.”

At first Ann said she had no idea what she was doing.  When she first started lobbying she recalls being laughed at.  She said, “They laughed at me, and that was hard. When they said, ‘You’re never going to get that because your child is too severely disabled. You’re not going to get it.’..that’s when I said to myself, ‘I’ll get it.  I’m going to do it and I’ll get it.’ I was determined.”

They were only able to receive funding for three people at first.  However, it expanded from there and was able to create a post high-school program for people with disabilities.

“I have no regrets, none.  Since I’ve lobbied and done what I’ve done, I’ve had people come to me and watch me.  They just couldn’t’ believe all the things that I did.”

The post Ann: Ataxic Cerebral Palsy and Seizure Disorder appeared first on Orangesocks.org.

Life Doesn’t Have to be Perfect to be Amazing

20-Week Ultrasound Reveals Brain Abnormalities

Ileana and Lorenzo were excited when they found out they were expecting a baby.  At their 20-week ultrasound, they found out that their baby, Giselle, had ventriculomegaly.  Which means there were abnormalities in her brain.  They were assured it was mild and insignificant but still asked her if she wanted an abortion.

Ileana and Lorenzo refused.  Results from genetic testing gave them the idea nothing was wrong and they were in the clear. Ileana said, “She was born on November 30 uneventfully.  She is great, and we took her home and thought that the worst was behind us, so to speak.”

Getting a Diagnosis

When Giselle was falling behind for hitting developmental milestones, their pediatrician recommended using early intervention as a precaution.  However, Ileana described, “We started PT and OT, and the months kept going and that gap where she needed to be and where she was kept kind of growing further apart.”

Getting a diagnosis for Giselle happened over the course of the first couple years of her life.  Ileana first learned about her microcephaly diagnosis when she was looking through some paperwork.  She had just been told that Giselle had a smaller head and was below the normal curve.  

Getting Giselle’s diagnosis of cerebral palsy came much later.  Six months ago Ileana pleaded to find a reason for Giselle’s developmental delays.  Giselle’s diagnosis went from global developmental delay to cerebral palsy.

Seeing Children with Disabilities as a Blessing

For Lorenzo, having a child with a disability wasn’t too difficult to process.  He said, “My mom adopted my youngest sibling who had Down syndrome..I just saw him as my little brother, so that transition had helped me prepare for Giselle.  I was ready to be a father, to be there for my wife really, and it has been a blessing to have her in my life and appreciate children with special needs.”

He called having Giselle diagnosed with microcephaly and cerebral palsy “a great opportunity to appreciate children with special needs.”  

Finding Your Voice

Ileana explained that the hardest thing so far in parenting Giselle has been finding her voice.  She said, “There was so much that was coming at us all the time, and it was difficult just being able to get through this new schedule..At the beginning, there was a lot of, ‘You need to go here, you need to do this, you need to do that.’ It was a lot of conflicting information that made me feel overwhelmed.”

Communication is Key

Looking back to their 20-week ultrasound, Lorenzo says he would have handled things in a different way. He said, “Through a learning curve on my part, looking back, I wish I would have better communicated what I can bring to the table, how can i help best, what my weaknesses are and how can we work through them so i can be a better father and better husband.”

He wanted Ileana to feel his love and support.  He has now learned that he needs to be up-front and honest and say, “Let’s get a game plan going.” 

Don’t Feel Like a Bad Parent

When she compared herself to other families in their grieving stage, Ileana felt embarrassed for feeling sad about Giselle’s diagnosis.  However, she now has learned that it’s okay to be sad, to grieve and to feel hurt.  

In order to help her through her grieving process, Ileana sought out a community of parents.  She was able to find comfort and “solid practical advice” as she put it from other parents. They were able to help her to know what that they were going to be okay by redefining her definition of what okay meant.

Her final parting words were, “Life doesn’t have to be this perfect thing to still be wonderful and amazing.  That’s our biggest thing to share, what we’re not a pity story; we are living a great life that just happens to look very different.”

The post Ileana and Lorenzo: Microcephaly and Cerebral Palsy appeared first on Orangesocks.org.