February 7, 2008. Beau Hunter Weichers came into this world - 2 weeks late. I guess it should have been an indication that things might always take a little longer with Beau. It was a scary delivery. It all seemed fine and I labored only a short period and delivered but when your baby, your first born, doesn't cry it's the most terrifying and quiet sound you've ever experienced. I didn't hear the alarms, I vaguely remember the amazing NICU nurses rushing in, I don't remember my doctor stitching me up at all - I just remember repeatedly saying, "why isn't he crying?". It wouldn't be the last time we thought we had lost our boy.
Intuition would tell me several times during that first year that something was different about Beau. I hated the routine check up appointments because Beau was never meeting their stupid milestones on their stupid charts. He was a year old and couldn't crawl, let alone walk. I went to PT with him and I would crawl over his body while holding his middle section up to keep him from falling. He eventually got it and they discharged us from physical therapy.
July 29, 2009 was the second time we thought we would lose our Beau Beau. That night was when epilepsy entered our world. It was the night my poor husband had to talk to the 9-1-1 operator while I held our limp baby. You can be trained to know what to do in an emergency, as I was, however when your 17 month old child is the patient it throws you into a tailspin. One thought I've never shared is the conversation I had with God that night. Maybe I never shared it for fear that people would think I was crazy. Beau was laying with his head near the hallway wall and as I laid my ear to his mouth and chest I focused on something on that wall - I can't tell you exactly what I saw but my focus was locked on the wall. In my mind the words I remember were, if Beau doesn't make it, I won't make it either. I wasn't sure how it would happen, but I knew I couldn't handle any more. Life was rough at that time and "loss" was a common word for us. Mentally, I felt done. Thankfully God wasn't going to let Beau's story end there.
A couple days of testing and we had the diagnosis; partial agenesis of the corpus callosum as well as epilepsy and global developmental delay. What does that mean for his future? The answer: we don't know, every child, every brain, is different. Will he walk, run, talk.....? The answer: we don't know.
Oh if I could have foreseen what the months and years that lie ahead would throw at us. Let's face it I'm glad I didn't see what was to come. The first few months after the diagnosis were difficult. Watching Beau attempt to crawl and seeing his arms just give out at any given moment and him landing flat on his face. Having to hold him down to give him the horrible liquid phenobarb (Andy and I tasted it - way worse than Fireball by the way). The therapy appointments, the doctors appointments, the specialists, the IQ testing, the medications, the sleepless nights, waiting for phone calls at work of an emergency with him, trips to the ER for staples/stitches from falling so often - and the list goes on.
What's amazing and something I pride myself on, is that I didn't completely fall apart. I was certain I would, but I didn't. I rallied. I could sit and throw myself a pity party or maybe I could make a difference for other families like ours. Beau's Beautiful Blessings came about as a way to do something constructive with the reality we were facing. It was either take that sadness and whine and cry or take that energy and do something positive and beneficial.
Looking back over the last 9 years we have been on a crazy roller coaster ride. I was one person before July 29, 2009 and a different person after. It was so hard. So, so very hard and some days it still is. Pill organizers, diapers, a communication device, therapies, drop down tantrums in the middle of a store - ongoing. I never realized the impact a special needs child could have not only on us as parents but also on family members, community members, classmates and teachers. He has taught me things you can't learn in any book.
Watching the bond he shares with his younger sister was something my heart needed. From early on she babbled with Beau and he babbled right back. They had their own language. And today she is often the only one that can calm him when he is really upset and she knows his signs and grunts just as well as Andy and I do. She will talk to you about his diagnosis. At 4 years old, she is wise beyond her years, and God's other amazing gift to us. Beau has grown so much with the help of Delaney.
We had two different early birthday celebrations this weekend. At each one, we only lit 1 candle. In 9 years Beau has never been able to blow out his birthday candles. This year that all changed and we weren't expecting it. We waited 9 years and we are proud to say Beau blew out the birthday candle like a champ - no spitting either! What seems small to others is huge in our world.
Well Mr. Beau, your momma wants to wish you a very happy birthday. I have read back through the letters I have written you over the years and they provide me with proof that you have come so far. You crawled, you walked and you can run. While you aren't able to carry on conversations, I am grateful that you can say some very important words like momma, dada and Dee for Delaney. While I won't say it has been the easiest 9 years, I'm grateful God chose you for us. His unique creation is handsome, charming and full of joy for some of life's simplest things (like spending an afternoon at Menards to watch the forklifts or watching the cars go through the car wash or watching garage doors going up and down).
Thank you for never giving up.
Thank you for always fighting and trying, even when it would be easy to give up.
Thank you for changing me into the person I am today.
Thank you for inspiring people and inspiring ideas - like an inclusive playground :)
Happy 9th Birthday Beau. I'm so lucky to be your mom.
(PS - Plan on having a dance party tonight playing only your playlist; Miley Cyrus, Party in the USA, Carly Rae Jepsen, Call Me Maybe and LMFAO, Sexy and I Know It.)
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