Day 7 of "A Week In The Life of Blake" Sundays are the Lord's day, so we get together with our brothers and sisters for worship and Bible class!
Sundays were hard on us, and particularly me, for awhile there. For so long, we didn't know the reason for B's challenges and I carried that burden and uncertainty with me each week--I think I cried to someone at church every Sunday! Pretty sure my friends started packing their purses with Kleenex specifically for me . I felt safe at church, of course, but it was also one more place that "wasn't easy". Finding the right Sunday school class for B was challenging. I dreaded dropping her off, I dreaded the questioning looks. B wasn't doing what her peers were doing, so on Sundays, when I should feel connected and safe, I again felt isolated and uncertain--guilty for leaving her in class and her possibly being a distraction. Don't get me wrong, we have a wonderful church family and very dear friends! But, no one really knew our battle, and at the time we didn't really either- at least we didn't have a name for it.
One day, I decided that fear and guilt could not rule any longer. Sundays were hard, class was hard, but it was worth it to be there...worth thinking outside the box to make it happen and make it better. One day, I asked my friend, Tara, if she knew anyone that might be willing to be an aide for B in class. Without hesitation, she said "I'll do it!" B absolutely ADORES Tara. I think it's because Tara's always given B a lot of attention, and always treated and talked to her like a typical kid. Blake responds to that. For about 4 months now, Tara has been taking B to the 3yr old class and I've gotten nothing but glowing reports each week. Tara has been a God-send for Blake and for us! I send B off, and go to class myself, now unburdened and confident B is in good hands and that she is happy and feels safe. (Plus, her Sunday school teachers are amazing too!) I'm posting an old pic of Tara and B--you can see the love! Tara couldn't be at church today, so Miss Nicole (also wonderful and great with B) took her to class where they learned about Joseph and the coat of many colors--(Funny, because Gen 50:20 is a verse I go to constantly through all of this! "God intended this for good...").
As for worship, making it through an hour-and-a-half church service can be daunting at times, but we've got a good routine now. Ben stays out in the lobby with B to let her walk around (remember, her need for constant movement) and as soon as the sermon starts, they come in to join Andi and me. We have books and GF cheerios cued up. It's hard for B to sit that long, so we let her walk in between us and trade off girls throughout. Usually, they do really well, and today was no exception. With the closing prayer comes a sigh of relief each week, "we made it!" (I know this is the case for most all parents of little ones though )
After church we usually go home for lunch/naps, but today we were able to have a meal with some of our church family. Blake's friend, Charlie, asked if she could help feed Blake...oh, the servant hearts already in these little ones! I understand now, when Jesus said "let the little children come to me."
After lunch, we headed home for naps. I told B, if she slept well, Nanny might be here when she woke up. And she did, and she was! B was so excited to see her Nanny, and visa versa. Nanny, Kat Kat, Mal Pal and I went to a wedding and Donna babysat Blake. Blake loves her "Nonna" (Donna)--which she has said a couple times! Of course "Nonna" brought some new boots, so they tried those on while we were gone . Thanks to grandmothers and aunts, this girl stays fashionably clothed!!
I'm so glad we did not let the challenges keep us from our church family. So many of our friends from church have walked this journey with us and loved on us the whole way. I understand love and community so much more deeply than I ever would have, had we not been through all of this. They really love Blakely deeply...and by loving her, they love us!
I'm kind of sad this is Day 7. I was hesitant at first to reveal so much, to be so vulnerable, but it was worth it to me to give B a voice, to raise the awareness, to show just how much she has to fight every day. I'm ending these posts, however, so encouraged, so hopeful, so thankful. Team Blake is alive and well and you all have given us so much love, so much support, so much to be thankful for!! THANK YOU for being on Team Blake! THANK YOU for loving on her and loving on us! THANK YOU for lifting her and us up in prayer--this is one of the greatest gifts you could give us! When I think about how many times He's heard her name, I get chills.
The battle will continue tomorrow...please keep praying, please keep her and all Rett girls in your heart and on your mind! I don't know how long we'll have to keep fighting, but fight we will! We love you guys!! We'll continue to update y'all, it may just not be everyday And, please note, this was an unusual week, in that we did not see GiGi, Poppie and KK (Bens parents and sister). They are VERY involved in her care and they help us tremendously! As a matter of fact, our entire families on both sides are very active in her life and ours--we are truly blessed!