Ella’s Endeavor

alyssa soileau

director of new parent baskets

basket program

Finding out that your newborn child is diagnosed with Down syndrome can be one of the scariest things. Many parents feel fear, anger, shock, guilt, overwhelmed, confused, and are left with asking “why me?” We know this from experience! Our baskets are meant to welcome new families to the Down syndrome community. We want them to know that they are not alone, and that there is a strong community of support waiting to help.

where we’ll be

We donate baskets to families in Louisiana that receive the news that their child has Down syndrome. We give baskets to a social worker or other contact within hospitals, who then offers them to the family.

We will also deliver baskets by word of mouth. Some families do not receive the diagnosis until they have departed the hospital, and we certainly do not want to leave them out. If you know someone who has recently received the news that their child has Down syndrome, please contact us.

ella's story

I will never forget the day our entire world changed. It was a Sunday afternoon when I realized we would meet our daughter sooner than we had expected. My husband held my hand, and I heard it, that first cry, at 10:43 pm. We were so ecstatic! I could not wait to hold our beautiful little girl. She was perfect!

I had a C-section so our moment together didn’t last long. I remember hearing the nurse call out her weight and thinking she was much smaller than the doctor had predicted. The next thing I remember is being in my room with my mom and Blake. It had been such a long day. We were all so exhausted. My husband started to mention things looking “different” with Ella. I was in such denial and told him he was crazy. He started explaining the signs of Down syndrome and how Ella had so many. I then questioned the nurse and told her to tell my husband he was wrong. That is when she told me that she did have some of the features, but the pediatrician would look at her in the morning. It couldn’t be true. It was just late and no one knew what they were talking about. She looked perfect to me. What would cause this? I thought I did everything right.

When the doctor walked in the following morning, I just knew… I could tell by the look on her face. I remember hearing “Congratulations, you have a beautiful daughter. ……then DOWN SYNDROME” I felt like someone had punched me in my gut. Literally. How did this happen? Why us? Why her? Why Noah’s sister? I kept playing out my entire pregnancy. Wondering what I did wrong, I questioned every single decision I made during my pregnancy. It is so silly to think back on now, but I questioned if I was in the sun too long or if I had drank too many sodas. I did not know much about Down syndrome at the time, but I knew it was my fault. Blake and I held each other and cried like we never have before. We were hurt, angry, broken. This perfect family we had both envisioned had disappeared right in front of us. I felt as if I had just lost my daughter. The daughter that I carried so long, the daughter that I imagined picking out prom dresses for, the one that was going to become a famous dancer, the one that would become my best friend, the one that would need me in every step of her wedding planning. She was gone.

Her pediatrician stayed with us for a while answering any questions we had. She checked on us throughout the day and came back again later that night. That evening was very long. I did not want to see anyone. I did not want to speak to anyone. Everyone was waiting with anticipation for Ella’s exciting arrival and pictures to flood their Facebook news feed. Nothing. I secluded myself in the hospital room. I tried to avoid seeing anyone. I just wanted to avoid having to say the sentence, “Ella has Down syndrome.” The thought of saying those four words killed me. It meant that it was real, something that would never, EVER change, something that couldn’t “be fixed.”

The night we came home from the hospital was scary but comforting at the same time. It meant we were starting our new life together – a life that we did not expect the last time we stepped through those doors. When we pulled in to our driveway, I saw a flood of vehicles; vehicles that belonged to our sweet, sweet family and friends. They welcomed us home with gifts and food galore. The thing that I remember most from that night is that we had so much love and support from friends and family. We will never forget any of that.

The rest of the week seemed like a blur as the genetics specialist confirmed that Ella has Down syndrome. I began to feel so guilty for how everything had played out. Life is supposed to be celebrated. Those few days in the hospital…we will never get those back. I felt so guilty for feeling so sad and angry and for crying with Ella. Did she know why I was crying? Could she feel my hurt? Ella was here and so beautiful and perfect. It wasn’t fair to her to feel this way. I prayed so many times that God would change this… would fix her. Little did I know, God was just changing me. Ella is just perfect the way she is. My outlook on things was what was wrong. This is all part of God’s plan…

So much has changed since that week we were out of the hospital. We realized how truly blessed we are. Out of all of the parents on this earth, God chose us to be Ella’s parents. We really are the lucky ones!

I spent so much time worrying about the future and grieving the loss of the child I had planned for. I wish I could go back and shake that woman in the hospital bed and tell her how truly blessed she is. Ella is going to make her a much better person in life. One of the things I was afraid of when we found out Ella’s diagnosis was that she would be treated different from Noah. I was fearful she would be “shunned,” boy was I wrong about that one. I believe the saying “she leaves a little sparkle wherever she goes” was truly meant for her. We seriously cannot go anywhere without Ella making new friends. She is like a magnet. She gives the best hugs to everyone she meets. She is definitely the Queen Bee at her school. Everyone wants to be friends with Ella!

Ella is one of the happiest kids you will ever meet. You are a happier person just from being in the same room with her. She brightens everyone’s day. She allows you to view the world in a whole new perspective. She makes you want to become a better person in life. Relationships have been mended, families brought closer together, new friends have been made…all because of my little girl! She is changing the world. So many people strive to be that person that Ella already is in such a short period of time. The world needs more Ella’s!

Life is a journey, one with many twists and turns, potholes and bumps, fast lanes and stop signs. Ella has taken our lives down a path we have never traveled before. Time has shown us that this road that looked so scary has only beautiful scenery to watch. Ella’s presence is now like the fourth tire on our vehicle – it’s what makes us complete and keeps us trucking forward.

we look forward to the journey ahead!