Little but Mighty: A Story of Dwarfism

Planning for the Baby

Rebekah and Chris knew they had a chance of their children having achondroplasia or dwarfism like them.  When Rebekah was pregnant with her second child they did an amniocentesis. This is a genetic test done using the amniotic fluid to screen for developmental abnormalities in utero. 

Rebekah said, “I don’t like surprises; I have to be prepared..we would have taken any type of diagnoses we got as we were going to take this pregnancy all the way, but we just wanted to prepare because I didn’t want the unknowns.”

Getting a Diagnosis

The amniocentesis showed that their baby Ella did have achondroplasia like Rebekah and Chris. Chris shared his first reaction, “I was scared to tell you the truth, because during my life, I was small..I don’t know why, but I thought that Ella might get made fun of a lot and stuff like that.”

Chris had some past experiences in high school and junior high that made him afraid for Ella.  Rebekah shared how her parents helped her in her school aged years. “What prepared me the best is both of our parents who were involved with other parents who have kids with dwarfism.  Little people of America is a great organization, and they got us involved in that, so we were able to make friends with our peers who were people with dwarfism our age.”

A Child with Dwarfism Draws Attention

Rebekah shared what challenges they have faced with Ella who is five, “When Chris and I were walking down the street with a baby stroller, I would put the curtain down, because when people saw us, they would turn around and look in because they wanted to see the child.” As parents, they felt like they were on display.

She then shared what would have been helpful in that situation, “If they did have questions and if they did come up and start asking questions about us, wanting to know about our dwarfism and who we are, of course we’d show you the baby.” 

Differences in Children

Rebekah shared what is great about having a child with dwarfism. Rebekah said, “The good thing about it that they don’t walk until around two years old, and by the time they are that age they know..what they cant touch.” 

“It has been nice that we didn’t have to baby-proof at all.  That was the stark difference between our son and her; I didn’t have to baby-proof anything.” Rebekah added.

Advice for Others

“Find as much information as possible as you can and seek out other people who have the diagnosis, parents as well as adults who have the diagnosis; that’s going to be your best bet because you’re able to see where they are and how they got there and what to expect.” Rebekah stated.  

She also gave great advice for the siblings of someone who has dwarfism, “Just seek out Little People of America and get your child and your family to be a part of that organization.  My average-sized brothers and sisters have benefited from that too..my siblings were able to make friends with other siblings and other little people, and they were able to share their stories and how their siblings with dwarfism get all the attention.”

The post Rebekah and Chris: Achondroplasia (Dwarfism) appeared first on Orangesocks.org.

Fear Turns into Gratitude

Unexpected news

Throughout her pregnancy, Kelly, never had any indication that Everett would be born different.  She said, “We had only one ultrasound right around the 20-week mark, and everything seemed to be normal..nothing was ever mentioned about anything proportion-wise with his body.”

It wasn’t until they were packed and ready to take Everett home that a pediatrician mentioned that something was different with Everett.  Kelly recalled, “She first proposed skeletal dysplasia, and then she said achondroplasia. I had never even heard that word before.”

They went to their regular pediatrician who decided to do blood work.  A week later, they received the diagnosis of achondroplasia. Zac, Everett’s dad, said, “It was just really heavy.  Everything kind of stopped. At age 37 and this being my first son I’d waited my whole life for, I envisioned this child to be perfect and beautiful and joyous.”

Fearing for the future

Growing up, life was challenging for both Kelly and Zac.  They were both teased and ridiculed throughout their elementary aged years.  This immediately brought fear into their minds. They worried for what life would look like for Everett with his diagnosis.  Zac said, “I did not want our child’s life to be harder than what mine had been. I’m what the world would consider a person of average height and average intelligence, and life has been hard enough just as a regular citizen of the world”

As a young child, Kelly moved around a lot and said, “..my mind went to that place where the world can be very cold and hard. So i immediately grieved.  I thought at that moment that life was going to be that much harder, and that was challenging.”

Turning towards God in moments of despair

After initially grieving the loss of the life they thought they would have for Everett, Kelly said, “We immediately turned to God in prayer..there was a lot to work through in prayer with God as to what this looks like.”

Zac has been able to find joy in caring for Everett.  Zac said, “It I didn’t know God or know what a relationship with Him looks like or what He said about His plan for us, that the plan is not to harm us but to give us hope and future..I’m not entirely sure how i would have managed the first six months to a year with Everett.”

Looking at your life in a different way

There have been a few instances that have helped Zac learn to look at his life in a different way.  He shared, “I remember on several occasions sitting around the dinner table with other couples who were talking about their sons and how good they are at athletics.  Athletics was a great way for me to connect with my grandfather and my dad.”

He continued by saying,  “I’m realizing that my son is going to be interested in other things.  I have no idea at this point if it’s coding or video games; it will be different. It’s not any less of a life or any less of a level of enjoyment and joy; it just comes packaged differently.”

The impact one child can have

Everett was the first grandchild born on both sides of their families.  Kelly said, “He has been long-awaited, so when he came, everyone was overjoyed..our family has been extremely supportive, both sets of grandparents..Everett was welcomed in by aunts and uncles and family who were extremely loving, supportive, and in awe of him.”

Their families were cautious at first hearing Everett’s diagnosis.  Zac said, “Once we were given the green light to go about our daily lives..I think our entire families just kind of breathed a sigh of relief. From that point, it really is just making sure Everett’s identity isn’t founded in his diagnosis and that he is recognized as a normal person.” 

Zac jokingly said, “Everett has more followers on Instagram than I did for the first five years that I was on there.  I mean it just has been incredible.”

Everything happens for a reason

“My final thought would be that nothing in an accident.  I don’t believe in accidents. I think that God ordains our steps, and I think everything He makes is beautifully and wonderfully made.” Kelly said.  She said that she knows Everett came into their lives when they needed it most.  

Zac had one last thing to add.  He said, “I would definitely encourage those who are just swimming in it and don’t know where to seek counsel, that they seek that from a community of people who have received the same diagnosis..it definitely calms the waters. It will begin to transform our mind into one of gratitude..you just have to stay faithful and committed to raising your own human.”

The post Kelly and Zac: Achondroplasia appeared first on Orangesocks.org.

Devastation Turns to Happiness and Joy 

Blowing off doctor’s findings

With her first pregnancy, Leslie was told that her son was measuring really small.  They were concerned that he had IUGR or intrauterine growth restriction. He was monitored very closely and when he was born, they said, “Oh, we were wrong. He is perfectly fine and healthy.”

During the pregnancy of Lilah, Leslie was told the same thing.  She said, “..they started telling me the same thing around the same time, ‘She’s looking small, your measurements are a little off, you’re measuring small’..and so forth, and I literally just blew it off.

Finding out your daughter has achondroplasia

They recommended that she do some stress tests and some additional ultrasounds.  In the meantime, they moved and switched doctors. She said, “So we went to my new doctor, so we did the ultrasound and the ultrasound tech took a very long time..I, at the time, was just really annoyed because my two-year-old was running around and she was taking a really long time.”

When her ultrasound was finished, her doctor sat her down, placed a box of tissues near her and told her, “Leslie, I think your daughter is going to be born with dwarfism.”  Knowing her history with her first pregnancy. She tried to explain that he was wrong. Mid-sentence he told her, “I’m 99% sure.”

Fear of the unknown

“I really was afraid because I just didn’t know much about it.  It was a huge unknown for me, and fear of the unknown, you know there’s always questions and you worry about what you don’t know.”  Leslie said. Leslie and her husband started wondering about what Lilah’s life would look like.  

They were concerned about her quality of life, if she would survive birth, or if she would get bullied.  She said, “..the biggest emotion I had right away was just fear. I was really scared, it was really just a dark day for us, we cried a lot.  We were really emotional and just frightened for our daughter.”

Miracles surrounding birth

The morning of her planned C-section it was the first snowfall of the year, Leslie said, “..so we woke up to all of this snow, and it was just like everyone’s blessing being poured down on us.  It was so surreal.” The delivery of Lilah went better than anticipated. They thought Lilah was going to be born under five pounds and would have to spend time in the NICU. Lilah was born weighing almost six pounds and was able to avoid a NICU stay.  

While recalling the details of her birth to her mom, Leslie said, “You know mom, I knew everything was going to be okay when I saw all of the nurses smiling, they were all smiling..That day we were very blessed and there were so many more souls in that room than just those nurses, and it was an incredible day.”

Achondroplasia

There are 200 different forms of dwarfism, achondroplasia is a genetic condition that affects the growth of the bone in the cartilage of the growth plate.  Some of the symptoms related to achondroplasia are: shortened arms and legs, large head size, bowed lower legs, flat feet, poor muscle tone and loose joints, and delayed developmental milestones.

An official diagnosis for achondroplasia can only be done by genetic testing.  During her pregnancy, Leslie opted out for an amniocentesis. When Lilah was born, she was tested and officially diagnosed with achondroplasia.

Fear of what other people thought

In the four years that Lilah has been alive, Leslie described the hardest part of taking care of her was the six weeks before she was born.  Both her husband and her feared the social implications of having a child with a disability would bring. They worried that people would either judge them or feel sorry for them.

She said, “..that was the hardest process of shedding those fears and getting rid of all the anxiety that came along with having a child with this diagnosis..and so we went from being discouraged and frustrated and asking, ‘Why us?’..to a place of, ‘Wow, like we feel honored that God chose us to get to walk this journey.’”

Story is shared far and wide

Before Lilah was born, Leslie started a blog to share their journey.  Through this blog Leslie was able to be honest and share the difficulties in coming to terms with Lilah’s diagnosis.  Since sharing their journey, Leslie said, “..it was unbelievable the support and the encouragement, and just this huge village formed around us that I didn’t know we would need, but we would desperately need.”

In sharing her story, Leslie has been asked several times from other moms with a similar diagnosis.  She said, “I first ask about the diagnosis.” This determines what type of advice Leslie will give. If it is a lethal form of dwarfism, she helps the moms with ideas to preserve the memories of their child and just enjoy the pregnancy and find peace with the diagnosis.  If the diagnosis is similar to Lilia’s, she said, “I’m thrilled because the prognosis and outlook is wonderful, so I’m happy for them..I talk a lot about hope and just how mommas ahead of me in this journey told me that everything is going to be okay.”

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