Today is Blake's D-Day. That's what the Rett community calls it, "D-day" or Diagnosis Day. It's been 1 year....
On 7.7.14 our world was rocked, and our hopes and dreams for Blake's recovery were seemingly obliterated. I didn't sleep well the weeks and months following- I went to bed most nights not wanting to wake up. I was thanking God for answers, but begging Him to make it all go away. We slipped into a grieving period (me, Ben, our families...). Trying to make sense of the last few years, trying to understand where Blake was in regards to what we were reading, and trying to understand Blake's severity through this new lens of Rett Syndrome -- as far as we could tell, based on her age (3.5), she was still in the "regression phase"...Like I said about Rett Syndrome in my very first post (The 'Rett's of the Story), I had to let her diagnosis sink in. "I was trying it on for size. It fit, but I didn't like it. Not one bit." and I'll add one year later...I still don't like it!
I have been dreading this post. I don't want to go back "there". I don't want to re-live the feelings I felt those weeks as I processed everything I was reading on the internet, "Rett girls can't...Rett girls won't....Rett girls never...." My heart was suffocating. Ben and I were already bloodied and bruised from the last couple years, and then this. It was one big powerful punch in the gut...the battle we'd been fighting was not going away anytime soon. We knew this was way bigger than us. We knew this was a monster we couldn't fight any more on our own. They say "it takes a village", but we needed an army. We asked for His help, and He steadily called that army to our side. That army we call, Team Blake.
We are exactly one year in to her diagnosis, and with the help of Team Blake, we've been able to help her keep up her fight. We've raised over $25K for research, and we're not stopping there. You all have given GENEROUSLY, out of the goodness of your hearts, to B's medical fund and to the purchase of her Tobii. You continue to remind us that we are not fighting alone. You post, share, tweet and wear the t-shirts! You have supported and encouraged us physically, mentally, emotionally and spiritually. Thankful is an understatment.
Mom and I were reflecting on this past year as we spoke on the phone last night. B has been doing very well the last few weeks and months, she's made it past the regression phase. The bio-med doc we are working with in Florida, has helped heal her gut and lift her "brain fog" as he's given her body what it needs to decrease inflammation and methylate properly. She's gaining weight, and looking healthier. She's happy at school and she's more alert. She's responding more quickly to our cues and requests, and she's got more of a pep in her step. She's had some really great therapy sessions lately, she's vocalizing more (some discernable, some not, but she's trying and that's a good thing), and she's just happier. This is all relative of course, BUT with every bit of progress she makes, we feel so very thankful. Like, last night, Ben was trying to get her attention from across the room. All he said was "hey..." and she quickly turned her head to look at him. It was so quick that he and I quickly looked at each other surprised, like "wow, that was a super fast reaction time!" Without a word, we both knew that neuron fired quickly for her, and it looked so "typical" that it took us aback. I never thought I'd be thankful for something that "small". But I am. SO VERY THANKFUL! And, that's a good place to be; thankful.
As I look back over this year, I see God's handprints all over it. He has taught us so much. He's blessed us so much. He's undeniably answering prayers, one by one, and He's showing me that He has a plan for Blake and a plan for us. He's showing me, how he can take every bit of bad and turn it for good. He's showed me just how amazing and special my Blakely is - I see it in her eyes, and I see it through her love and just the little person and fighter she is. He's strengthened my faith and renewed my HOPE. And it's not JUST my hope for a CURE. I really do believe a cure is possible in Blake's lifetime (and I still pray for this wholeheartedly!), but my outlook has changed a bit since 7.7.14. I will do what I can to contribute to the CURE, and I ask God to work through us to that end...BUT regardless of where we are on "the road to the cure", I am firstly and foremost this little girl's mama, and she deserves my full energy and attention. Her little self and her little soul, along with Andi Mac's little self and little soul, have been divinely entrusted to us. Ben and I are responsible for shaping these precious children. Yes, it will be somewhat unique for B, because she has Rett Syndrome, but Rett Syndrome or not, she is still a very impressionable 4-year-old little girl, who quite honestly, is a whole lot more "typical" that we give her credit for sometimes. Yes, she has challenges galore, challenges you can't even imagine....BUT, she is SO MUCH MORE than that.
Blake is beautiful, inside and out. She loves people deeply, and she is learning to love her God. She is smart. She CAN see, CAN hear, CAN learn, CAN laugh, CAN walk, CAN understand, CAN feel, CAN engage, CAN participate, CAN smile, CAN love. Yes, I want to hear her voice, and I want her to be able to use her hands SO BADLY I CAN'T STAND IT. But, here's the thing...becuase of all she's been through, when she CAN talk, whatever that looks like (Tobii, her real voice or otherwise), people are going to listen. So, I have a choice. I can sit around and lament what she can't do, or I can wake up each day and thank God for what she CAN do, and thank Him that she's here with me. I can use that day to teach and train her mind, body and spirit. We've begun to talk to her about Rett Syndrome. We tell her what it is and what we understand it does to her body. We tell her that it's not her fault. We are open with her about it, and we tell her how awesome she is and how proud of her we are. We tell her that we know she is smart and we believe in her. You should have seen her face when we began talking to her like this. It lit a fire in her and in us.
We can't "dial it in" just because she has Rett Syndrome. And we won't. Instead, I've decided to take God at His word. He tells me He can use it for good, well ok then, let's figure out how to parlay this into some good! When He says His power is made perfect in weakness, well then I'll boast in our weakness so that His power can be displayed through it. When He says all things work for good for those that love Him, I concur, because I not only believe it, I've seen it. He doesn't say "all things will be good", He says "all things work for good", so I'm gonna let Him do His thang! Because, I'm telling you, when the pain of life finally gives way to His power, it's an awesome experience. (Just for the record, I didn't get here overnight y'all, it's been a process)
One year past her D-Day, I still don't understand the "why her"... I just don't, and I may never. But, thank God, I don't have to. All He asks is that we trust Him, and that is where we focus. "We fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." (2 Cor 4:18) There is a greater war going on around us (Eph 6:12 ) . The fallen nature of this world is what it is, and the devil wants to use it to keep us distracted - those stinking fiery darts. But, what if we take the very thing he intends to harm us, and we turn it upside down for good? What if we let God use it to bring about something so much better? I don't know "the plan" or what all that is going to entail exactly, or how long it'll take, but I do know that this non-verbal little girl has touched more people's hearts in her 4 years of life and caused more people to drop to their knees in prayer, than I ever could have with all the words and abilities in the world! She's got a gift, and I think she's pretty doggon awesome just like she is. I really can't wait to see what God does through her. So, upward and onward we go in trust, with hope.
Thanks for all you've given to us this past year, Team Blake. Please keep praying, please keep believing. Thanks for being our village, and our army #ForTheSakeOfBlake.