I've been thinking about how to write this post for a week now, composing it over and over in my head; about what to say, and how to state it in just the 'perfect' way. I worry that I will never be able to truly express my thoughts or find words that are eloquent enough or powerful enough to describe the love we have for our sweet baby boy. And of course I then realized that it doesn't really matter how I tell Lincoln's story, for when I put it down in writing it will be so real. So definite. So defining. However that doesn't stop me from telling this story, because I want it documented. I want Lincoln to someday read this and know how much I love him. I want the world to know how blessed we are to have our sweet Lincoln in our lives.
And yet, this is probably one of the hardest things I will ever have to write in my entire life. Mostly because it's sad and amazing all at the same time. And so I begin to try and tell our story.
When I was pregnant with Lincoln and I found out we were having a boy I cried. I cried for joy and excitement, but I also cried because I was terrified. I knew the chances of having a boy with special needs was much higher than a girl, and I never ever wanted a child with special needs. I have worked in the field of special education for over ten years now and have had the incredible opportunity to work with the most amazing and inspirational families. They have lifted me up, given me hope and helped me be a better person . . . yet, I never ever wanted to have a child with special needs. I never ever envied those families no matter how life-changing their experience was or how blessed they felt for raising a child with special needs. I never ever wanted a child with special needs. But in ten years of working with families of children who have special needs I never ever heard a parent say that I would love my child NO MATTER WHAT. I have learned that for myself in the 3 1/2 months we've had Lincoln in our life.
I was instantly in love with Lincoln when he was born. And I loved him more each and every day I saw him fight for strength while trying to gain weight and get healthy. I loved him more as I watched him accept a tube being stuck up his nose and endure the heart burn he felt throughout the day. I loved him more as spit-up came out his nose and he learned to sleep in a new position so his apnea spells would stop. I love this kid so much I wonder sometimes if my heart will burst.
And I think the Lord has played a huge part in gently and slowly warming me up to the idea of Lincoln's needs and differences. When we learned he would be needing a feeding tube I cried. Everyone reminded me that it was temporary, that things would be ok, but I knew deep in my heart that there was more there than feeding issues. Next, we learned from an MRI that his brain had some abnormal and delayed growth (delayed myelination). That was a lot to take in, yet again the doctors told us they didn't really know what that meant for Lincoln's development. And then last week we learned that he has a chromosome abnormality on chromosome one- with both deletions and duplications of a specific place on that chromosome. Although I kind of felt sick to my stomach and wondered how we would get through this, I had been prepared for the blow. I knew deep down that Lincoln was different and had started to accept that since when I was pregnant with him. Somehow I just knew. Again, doctors don't know how his development will be affected and what his future looks like from having this chromosome abnormality. And so we take life one day at at time. We get out of bed every morning and celebrate each and every milestone he makes. We slow down and enjoy every smile he gives us and every giggle we hear from him. And suddenly the things that seemed important in life before are not so important now. Although I worry about Lincoln and what his future may hold, I also worry about how I will tell others the news and how those people will react. I worry about how he will be treated and what people will think. And yet, I worry about those same things with my sweet and typically developing child as well, so I guess that's part of being a parent.
What I have quickly learned through all of this is who our true friends are. We are so blessed to have amazing friends and an incredible family who steps in to help out without hesitation. People call or email to check in on how Linc is doing, to let us know they are thinking of us, and that means the world to us. And I must add that Shane has been the rock through all of this and continues to amaze me with his strength and faith in the Lord. And he too loves this kid more than life! My parents are incredible and I cry just thinking about them and the incredible love and support they have been. My dad said, "Well, what are we going to do, give him away? No. We will just love him for who he is. Always."
I was pretty upset when I learned the news about Lincoln's chromosome abnormality and wondered if I would just be sad forever. And then I found a blog that changed my attitude very quickly.
http://www.kellehampton.com/. Kelle is my age and has a baby girl with Down Syndrome. She is an incredible writer and puts my exact thoughts into words in a much more eloquent way than I could ever state them. And so, for a few minutes I'm going to quote pieces from her blog that I relate to perfectly:
"A week. How can it already have been a week? I've thought a million times what I'm going to write here and how I'm going to begin and what order I'll put it in and I think I've been so afraid to come back here...so afraid of not doing justice this very precious night...of leaving something out...of attaching simple words to an event that is so far from simple, it might just not be possible. But I need to get it out. I don't know how it's going to come or if it will make sense, but I'm just going to write. And when I get stuck, I will pick up this tiny blessed life beside me and hold her tight. I will breathe her in and remember..."
"I will never forget my daughter in my arms, opening her eyes over and over...she locked eyes with mine and stared...bore holes into my soul. Love me. Love me. I'm not what you expected, but oh, please love me."
"I couldn't emotionally handle telling anyone and yet, strangely, I wanted people to know as soon as possible because I knew I needed the troops...I was falling, sliding, tunneling into a black hole and I needed as much love as possible to keep me up."
"Life moves on. And there have been lots of tears since. There will be. But, there isus. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky. I feel lucky. I feel privileged. I feel there is a story so beautiful in store...and we get to live it. Wow.
The story has begun..."
And oh how we love this sweet little boy. Our sweet little Lincoln. We feel so blessed to be his parents and continue to have hope for the future.
