Pieces in Our Puzzle

Our little family has three children.  We have twins (a boy – Nolan and a girl- Harper) who are five and another little girl, Mia, who is almost three.

It took us three years, three miscarriages and two rounds of IVF to finally have our twins.  I thought that would be the hardest part of our parenting journey. I thought that we had made it to the other side and now we would just be a “normal” family.

I was wrong.

When Harper, our oldest daughter, was 15 months old she was diagnosed with Pitt Hopkins Syndrome.  At the time there were only 350 cases worldwide. Now there about 1000.

When something is so rare, even doctors don’t have much information to share.  We were told that Pitt Hopkins was a neurodevelopmental disorder and considered an Autism Spectrum Disorder. It’s caused by a specific gene in chromosome 18.

Geneticists told us that most children with Pitt Hopkins never speak, and many never walk. She would be extremely delayed and may have seizures. The future shown to us was grim.

I mourned that day.  I mourned the life we had pictured, and mourned the life that Harper would lead.  I cried for the struggles that lay ahead, the experiences our family would never have.

We would never have twins that made their own special language or played in their own special world.  I was never going to have the “normal” family I dreamed of and worked so hard for.

I wondered how I could even begin to parent two children, with such different needs.

We decided not to have any more children.  Having twins and having a child with such significant special needs was so time consuming.

We knew that we didn’t have any more to give. The idea of having another child with special needs scared me to death.  God thought otherwise. When the twins were almost two I found out I was pregnant again.

I was terrified.  I was still grieving Harper’s diagnosis on a daily basis.  I was trying to navigate the special needs world – one that I had no experience with.

We were starting various therapies for Harper and trying to plan for school. How could we bring another life into this mess and take our already precious time and split it even further.  How was that fair to our little girl, for whom daily life is a challenge?

Once Mia was born I understood.  I understood how we would find a way to manage.  I understood how having Mia helped my broken heart heal a little.

I understood how having a typical sister for Nolan was an amazing gift. And how having Harper in both of their lives was a blessing to them and not a curse.

There is never a day I would say that having three children who are all five and under is easy.  It’s a constant balancing act, and often I feel like someone is getting the short end of the stick.

I would also never say that I’ve stopped grieving for Harper and myself. Our life is not like I planned or hoped for, but that doesn’t mean it isn’t beautiful.

As the kids all grown I love watching them interact. I love watching the typical relationship that Mia and Nolan have. Thick as thieves one minute and fighting the next.

I watch Nolan turning into such a sweet boy who loves his sister no matter what. Who is upset when Harper is crying and we don’t know why. I see the smile Harper has on her face watching them run around like crazy people, and simultaneously feel joy at her happiness and pain from the fact that she isn’t running with them.

Our family fits together like a puzzle.

We each uniquely support one another and support Harper.  As everyone grows our roles will change, but we all have each other’s back.

I am constantly telling my kids that we are a team. My biggest wish for any of my kids is for them to be happy and to know they are loved.

How we help achieve that is going to look different for each of them, but I believe all of us can teach each other things no one else could. I know Harper has already taught us SO much, and has a BIG purpose for her life.

Written by, Amanda Strasburg

I am a mom to 3 kids, all 5 and under!  I also work full time as an insurance broker.  We live in Cumming, GA, north of Atlanta.

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.