Hi!  My name is Jennifer and I am mom to two amazing kiddos-twins, Lilith and Edison.  My husband, Adam, and I have been married for 6 years.  We tried for several years to get pregnant, struggling with infertility and other health complications.  So when the day came that we were told we were pregnant—miraculously, with not just one baby, but TWO—we were elated!  We chose not to find out their genders until they were born.

Our daughter Lilith was born with a head full of dark hair—which all fell out and has been replaced with a bright blond head of curls!  She is a spit-fire with a feisty personality, always making us laugh and bringing excitement to every situation.  She is smart and silly and adores her brother, always making sure he has everything he needs and caring for him in the sweetest way.  She is intuitive and adventurous and she happens to have a rare genetic skin condition called Ichthyosis.

Our son Edison was born with fluffy strawberry blond hair—like his dad—that has now turned into a beautiful shade of blond.  He has bright blue eyes, just like his sister, and the best smile you’ve ever seen.  His face lights up when he sees his favorite people and his infectious laughter fills the room with so much joy.  He loves to read and play with his sister.  His eyes light up the moment he sees her and she always makes him laugh.  He is sweet and snuggly and he happens to have Down Syndrome.  He was born with a congenital heart defect, hearing loss, chronic respiratory issues and is immunocompromised.  

As you can see, our kids are pretty amazing!  They have been the greatest gifts we’ve ever been given.  From the second we found out we were pregnant, these two little blessings have filled our hearts with a desire to do everything we can for them.  From the moment they were born our hearts were overwhelmed with love and a fierceness to fight for them and advocate in every way possible.

As I type this, Edison is in the operating room for his fifth surgery.  The start to parenthood for my husband and I has been anything but quiet or “typical” but we also will proclaim from the rooftops the greatness of our God and His hand of beauty as He writes our story.  At 20 weeks pregnant, I went in for our anatomy scan and got the scare of a lifetime.  Adam was traveling for work, so I was with my mother as we first saw Baby A and then Baby B.  As the technician, passed the wand over Baby B’s heart, it was clear that things weren’t as they should be.  Over the next couple weeks we heard the words “I’m sorry,” “termination,” “no quality of life” and other depressing and unfortunate language.  As parents who had fought so hard to have our babies, termination was never a consideration.  Our hearts were gripped with fear and then deep sadness as blood work confirmed that our Baby B had Down Syndrome and a congenital heart defect that would require surgery shortly after birth.  Through out the rest of my pregnancy I had weekly sonograms and echocardiograms looking at growth and for signs of possible heart failure.  Those last 4 months of my pregnancy were full of fear and uncertainty.  I feared for Baby A and their life as a sibling to a child with Down Syndrome.  I feared for my husband and myself that our lives were “over” and that we would never have a normal life again.  I feared for my child with Down Syndrome and the way that others would treat them.  Fear.  It gripped my heart and held on with a vice.  I focused so hard on my fear of Baby B, that Baby A just slid under the radar.  Her pregnancy was perfect and never showed any signs of anything to be concerned about.

I went into labor on my 30th birthday.  Funny fact about our family, all our birthdays are in the same week in September.  My babies chose to give me my own day though, and after 38+ hours of labor, they finally decided to join the world.  I had them naturally and Baby A was born first but instead of having Lilith placed on my chest, I heard the doctor telling me something was wrong with her skin and she was whisked away to the NICU.  11 minutes later Baby B, Edison, was born having complications with breathing and he was rushed off to the NICU as well.  Unfortunately, I suffered some post-delivery complications and needed immediate surgery, so my poor husband was left alone to hear the diagnosis of our children.  Lilith was born with a collodion membrane and diagnosed with Ichthyosis, a rare genetic skin disorder that is characterized by dry, scaling skin.  You can read more about it at www.firstskinfoundation.org.  She spent two weeks in a high humidity incubator while she painfully shed the membrane.  Edison spent 8 days in the NICU for additional oxygen support and was sent home to await heart surgery 11 weeks later.  

The first few days of us all being home together was a lot different than we expected.  Instead of sitting on our couch snuggling our babies, we had multiple appointments with specialists to discuss the care of our children’s conditions.  Edison with his heart defect and Lilith with her skin.  I remember feeling really sorry for myself at the time because it wasn’t the beginning to parenthood that I had planned.  But let’s be honest, when do things ever go exactly to one’s plan?  Having two babies at the same time is a challenge, but having two babies with special needs seemed overwhelming.  Adam and I weren’t deterred and dove headfirst into learning all we could, determined that our children’s lives would be no different than a typical child.

The first year of Lilith and Edison’s life was/is a complete blur.  I was determined to breast feed and my babies were little champs.  They tandem fed for 18 months!  That year was full of learning all the things about all the things.  Lilith’s skin routine took up so much time each day.  Edison had 4 surgeries in a 6 month period which meant lots of hospital time and isolation from all the germs.  It felt very lonely at times because of all the precautions we had to take.  But through it all God’s faithfulness was so amazing!  He gave Adam and I strength when we didn’t think we could do another thing.  We made it through sleepless nights, open heart surgery, spending our first Christmas in a hospital, missing family and events because we couldn’t be exposed to germs.  The first year of life with Lilith and Edison is a beautiful example how, even in the midst of things being so overwhelming, God’s sustaining mercy was ever present.  He grew Adam and I as parents and as people and we are so thankful for it all.

Fast Forward two years:  While we have a lot of “extra” things we need to do in our routine, we still experience life with fullness.  Our life is full of family, fun, adventure, a few extra appointments (usually 6-7) a week, but still everything (and maybe more) than the typical family experiences.  In fact, we’ve been on more trips with our kids in the past two years, than we went on together before they were born (and we travel a lot)!  Having twins with varying needs has been the biggest adventure of our lives and it’s one that we wouldn’t change for the world.  Lilith and Edison have taught us so much about persistence and living life with determination.  Their joyful personalities and ability to ignore the challenges put in their path is inspiring to everyone they meet.  Mostly, they have contributed to changing the perspective and opening our eyes to a whole new world full of possibilities. 

Thinking back to those first few weeks as parents, almost makes me laugh now.  The fear that gripped our hearts is long gone.  As scary as it was, we would do it all over again for our sweet babies.  The communities we have become apart of are full of acceptance and love.  Our friends and families have been introduced to them as well and it has become such a beautiful relationship.  We’ve overcome so much and by God’s grace, we are still standing and here to shout the worth and beauty of our PERFECT children.    

If there’s any advice I’d give to parents with a new diagnosis (Down syndrome, Ichthyosis, etc.) is that it’s okay to mourn the child you “lost.”  It’s okay to be sad about the life you dreamed of.  But if you could have one small glimpse of the new life that awaits you, you wouldn’t be sad or scared anymore.  You would run into the future with all the joy and excitement you could muster.  Life is good!  Your child is the greatest blessing you will ever know.  They will introduce you to a world you might otherwise never have known.  A world where inch-stones are celebrated with fierceness.  Where you will cry as much as you laugh—not tears of sadness but tears of joy that YOUR child has accomplished everything and more than others thought of them.  A world where you see beauty is the small things and find joy in everything your child does, from waving, to taking their first step, to saying their first word.  Some things may take longer to achieve, but the elation and pride you feel when it is done, will be stronger than you ever could have imagined.  This life is good, it’s beautiful and it’s worth living.  Congratulations!

My dream is that someday, a prenatal or birth diagnosis will hear “Congratulations!’ instead of “I’m sorry.”  I’m so thankful for fellow special needs mamas and amazing people like Macy, who are spreading the news and worth of our amazing children.  I know it is the dream of all of us to change the perceptions of non-typical children - to raise awareness and spread inclusion to the world.  

To learn more about Lilith and Edison, follow Jennifer @alittleextralife on Instagram and visit www.alittleextralife.com!