The Miracle Project – Abbey, Martin & Ana

My name is Abbey. I’m a wife and a momma to two extra special kiddos. When I’m not busy running to specialists and therapy appointments, I work for a veterinary pharmaceutical company. I enjoy reading, camping, and spending quality time with family and friends.

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Welcome Abbey, Martin & Ana

Natalie: How did your journey begin with Martin & Ana?

Abbey: Our journey is a little unique in the fact that our twins were adopted from Eastern Europe. They were born prematurely and after a month long NICU stay, were transferred to an orphanage. We met them the week of their second birthday, and they officially joined our family in August 2015 at the age of 27 months. With little known medical history, we’ve spent the last two years uncovering their multiple conditions and learning how to thrive as a family with additional needs. It has not been easy, but it’s been worth every second.

 

Natalie: What is the name of the condition(s) that Martin and Ana have? Can you share with us a little more about it?

Abbey: Martin is diagnosed with Global Developmental Delay, Periventricular leukomalacia, Spastic Diplegia Cerebral Palsy, hypotonia, Dystonia, Strabismus, and Nystagmus.

Periventricular leukomalacia is a form of brain damage that involves the periventricular white matter of the brain. It results in the death and decay of injured cells, leaving empty spaces in the brain. This is the cause of his Spastic Diplegia Cerebral Palsy, which affects his lower limbs. Martin’s hypotonia (low muscle tone) and dystonia (involuntary muscle contractions) also contribute to his gross motor delays.

Strabismus (eye-crossing) and Nystagmus (repetitive, uncontrolled eye movement) are both vision conditions. Both are linked to his Cerebral Palsy. These were easily treated by 18 months of daily eye patching.

When Martin came home he could hardly crawl and couldn’t sit up unassisted or speak, but with lots of hard work and persistence he has made incredible progress and now walks with the assistance of a reverse walker and carries on full conversations at an age appropriate level.

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Ana is diagnosed with Global Developmental Delay, Autism, ADHD, Central Sleep Apnea and Periodic Limb Movement Disorder.

Autism is a developmental disorder characterized by difficulty in social interactions. Many children diagnosed with Autism also have sensory processing issues/sensitivities and difficulty communicating. Ana is minimally verbal. She has a small vocabulary she uses to express wants, needs, and interests.

Attention-deficit/hyperactivity disorder involves attention difficulty, hyperactivity, and impulsiveness. Ana is an extremely active little girl, which can keep us on our toes! Thankfully we all love the outdoors- so frequent camping trips, park visits, and trail walking adventures allow our girl to run, explore, and exert her extra energy, as well as meet her various sensory needs.

 Central sleep apnea is a disorder in which your breathing repeatedly stops and starts during sleep, which occurs because your brain “forgets” to send proper signals to the muscles that control your breathing. Periodic limb movement disorder (PLMD) is repetitive cramping or jerking of the legs during sleep. Ana has always had extreme difficulty falling asleep and staying asleep. After multiple hospital stays and various tests she was diagnosed with these two disorders. With proper treatment we have all enjoyed the last couple months of restful, uninterrupted sleep.

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Natalie: What are some words to describe Ana & Martin? What do you love about them?

Abbey: Vibrant, resilient, determined… and the list could go on and on.

Not only have the twins conquered multiple challenges associated with their disabilities, they have overcome various struggles associated with living in an orphanage setting with poor living conditions, food scarcity, and severe neglect.

They have endured more in their little lifetimes than most adults ever will and are truly the strongest two people I know. They both have big personalities, happy dispositions, and an enthusiasm for everyday life.  It’s a privilege and a joy to be their momma.

 

Natalie: What are your worries and wishes for Ana & Martin

Abbey: More than anything, I worry about the quality of care they will receive when I am no longer able to take care of them. There is a high possibility that one, if not both, of my kiddos will need a care giver for longer than I will be alive.

I hope Ana and Martin lead a fulfilling life, whatever that means to them. I want them to realize that regardless of ability, or lack of, they are capable of remarkable things. I pray that they feel loved, included, and valued.

 

Natalie: Siblings of children with additional needs are phenomenal in accepting differences, what have been some if your favourite moments or examples of this?

Abbey: The interesting thing about the twins is that what one “lacks” in ability, the other has. They are continually cheering each other on to meet new milestones. Martin is constantly telling Ana, “You are talking so well.” And Ana holds his hands as he balances and attempts to make independent steps.

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Natalie: I’m passionate about the special needs and self care connection. Raising a child with a medical condition can bring some big challenges, how do you cope? Are there any self care practices that helped you on your journey? 

Abbey: Honestly, I’m not that great at self care. I try to give myself down time daily to decompress from the stresses of the day.

Generally I get through tough days with prayer and the support of family, friends, and my support groups.

 

Natalie: What advice would you give a mum who is beginning her journey after receiving her child’s diagnosis?

Abbey: Find a good team- doctors, therapists, teachers, friends, family, church members, Facebook support groups, fellow special needs mommas, etc. Having support is so important!! With daily therapies, specialists appointments, work and daily life it is so easy to become isolated. We live in a time where you can instantly connect with people continents away, who know what you are going through- find them! You are not alone! There is a wealth of information to glean from others who have walked this path before you.

 

Natalie: What are some lessons and blessings you have learnt since becoming their mum? How has it changed you as a person?

Abbey: I am far more aware of how uneducated the general population is about disabilities. I certainly was. I now see it as a responsibility to educate any opportunity I’m given. My children’s future depends on it.

I think I’m also much more compassionate, less judgemental, and more confident. I am able to say hard things and confront conflict better than I could before. It’s amazing the strengths that will develop when you have to fight for therapies, inclusion, and a better quality of life for your children.

 

Natalie: Do you have a favorite quote, prayer, or piece of miracle inspiration that you would like to leave us with?

 

 “When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you.” – Isaiah 43:2

 “I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.” –John 16:33

 

“Happiness is letting go of what you think your life is supposed to look like and celebrating it for everything that it is.” -Mandy Hale

 

“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he just might be the teacher who turns you into the person you are supposed to be.” –Joan Ryan

 

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If you would like to share your miracle moments and special needs journey,  please get in touch here. 

#themiracleproject “Uniting our stories across the globe”.

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2017-10-23T23:36:46+00:00

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