It’s hard to know what to say or where to start when telling a “Life story”. It’s in part my story, our family’s story, and of course Lucy’s story. With so many branches it can be hard to see the whole tree at once. So I figured I’ll try to start at “the beginning” and see where it leads me from there.
I was 20 weeks pregnant. I was deathly sick, my “morning sickness” was a joyful 9 month flu. But we were headed in for our first ultrasound and could not wait to find out the gender of our sweet baby. When our Tech told us it was girl it was all I could do to not scream out with Joy. I had desperately wanted it to be a girl, I had felt that it would be a girl.The ultrasound kept going, very quietly now, at first I didn’t realize the silence but soon I felt it. Something was wrong.
The weeks and months that followed were hard. Some days I cried, other days I tried not to think about it. And there where those joyful days when I knew everything would be alright. The rest of my pregnancy consisted of test and ultrasounds, more ultrasounds, consultations, and more ultrasounds…. We never really had an answer so they just kept watching. At 38 weeks I was starting to have massive water retention, swelling and showing signs of preeclampsia. It was also determined that an induced/planned labor would be best so we could have Specialist on hand ready to help our baby girl.
During labor Lucy’s heart rate started dropping, she was quickly delivered by forceps and out came a super chubby beautiful baby with so much dark hair. But I remember she looked so purple to me, I was so confused. My doctor held her up for me to briefly see her then she whisked away. She wasn’t breathing correctly, her chest was con-caving, and she was soon followed by a team of Doctors and my husband to the NICU.
She was put on a CPAP machine to help her lungs expand and insure proper breathing. More testing was done. We would be told many different things over the next two weeks while she was in the hospital, but came out with no real answers. It would be 6-9 months later before we are able to see a geneticist and get real answers.
To put it in understandable words, Lucy has a duplication and a deletion on her 11th chromosome. We were told that there are only a handful of documented cases like Lucy’s, all of them more severe. She was given the diagnosis of Beckwith Wiedemann Syndrome. She shows some of the characteristics but not all--her high birth weight, large tongue, larger internal organs (which can lead to cancer and gets checked multiple times a year) and extremely low muscle tone.
As Lucy has grown and developed she has become a sweet, healthy child. We had very limited information on what she would be like when she grew up so for the first few years we didn’t really talk much about her disability. We were worried about putting this sign over her head when for all we knew she could be “normal” in a few years. I worried and cried about how she was different, and how others would see her. I wanted her to feel included and accepted, to have fun and be loved.
Lucy develops at a lot slower pace; at 16 months she began to crawl, at 3 years she started walking. Tears of joy ran down our face as our sweet baby girl took her first steps, she was laughing and giggling with uncontrollable joy as we cheered her on. We were so excited that we didn’t even notice her strange walk at first, hahaha! She didn’t really bend her knees and walked with two stiff legs out to the side. We soon got her fitted for braces on her ankles and legs that helped over the next year and a half. We now laugh when we see those videos of her early walking years and her stiff gait.
We can probably tell you more than you would ever want to know about early intervention programs and IEPs… something most people probably have never heard of. We have been to countless therapy sessions and meetings. I cried and cried the first time I put her on a bus and sent her off to preschool. She had just turned 3 and couldn’t get home services anymore. She seemed so little, and I felt I was sending my sweet little girl off into the strange world with no one to protect her… She loved it, ha! And as I delivered our second baby two weeks later this turned out to be such a blessing! She has such a fun attitude about everything and loves to go out and explore. She loves socializing and loves to laugh with others.
Lucy is now 6 and she test at a 2-3 year level and has limited speech but knows quite a bit of sign language. In just the last few months her speech has increased drastically and she is showing greater interest in using that to communicate. We have so much hope for her and know we need to wait and be patient and work at a Lucy Speed J.
I feel like I have barely touched the surface but I am not sure where to go next, ha! There is so much more I could tell you about Lucy, the experiences we have, and the way our family is different. But I think this is a great “introduction” for those of you who have had questions about our sweet Lucy. Being a parent to a child with disabilities is so hard, so emotional, yet so sweet. I am extremely blessed to have such a sweet girl, to be taught patience and never ending love by her. Every day is a new adventure. I do not know what the future holds for her, for us. But I do know that Lucy is so happy! She is so loved! And that is all I want, all I dream and pray for.
I hope this helps you to see and understand our sweet girl, to love her for her differences. Please comment below with any questions you have and I would love to answer them in future post!