Chesed

Ten Months

Ten months of time with this precious baby girl.  Ten months of hugs and kisses, nights on the recliner, baby smiles, hours of blissful rocking, and splashing in the bathtub.  Ten months of bad colds and giggles that break the air into a thousand sparkling diamonds.  Ten months of teary tummyaches from dietary intolerances and wild celebration over milestones reached.  Ten months of lullabies and peekaboo.  Ten months of so much love.  Ten months of still hardly daring to believe the miracle of her is true.

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She is a doll.  A doll with a vibrant, confidant, affectionate, opinionated personality.

She stole our hearts from the very beginning, but the last two months, she’s squeezed places we hardly knew existed.  We watch her consciously and unconsciously, laughing at her antics and analyzing anything that seems amiss.

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The first weekend in December a cousin friend of mine showed me neurologic things she noticed with Zara based on her own experience with her daughter who had a stroke before she was born.  The way Zara didn’t clap symmetrically.  Her right hand clapped.  Her left hand tilted down and lagged in movement.  The way you could feel resistance in her left arm when you lifted both at once.  The way she bent her ankles instead of keeping them straight.  The way her thumbs went inside of her fists.  Our biggest concern was the way Zara had stopped rolling.  Dorcas showed me how to hold her legs in position to teach the muscles in her torso how to move.

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I came home and called Early Childhood Development to see what was happing with her referral.  The earliest time they could see her was mid-January.  Meanwhile, I followed Dorcas’ suggestions at home.  Within twenty-four hours, Zara was rolling from her back to her tummy toward her left with lots of struggle, but giggling hysterically at her new accomplishment.  Within days she could roll independently either direction as long as she was nudged in the right direction.  That and other arm exercises seemed to loosen her muscles and the resistance in her left arm diminished then disappeared.

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Did she have Infantile Spasms, was miraculously healed, and had only a few tiny neurologic deficits? Did she only have a musculoskeletal issue that needed loosening? If so, why did it suddenly start? We’ll probably never know.

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Does she still have spasm type issues? Occasionally.  Ninety-nine percent of the time, they don’t involve any arm raising anymore, but there are still occasional head and shoulder jerks. Are they benign? We don’t know.  There are times when she suddenly throws her left arm backward, stiffens for three to four seconds, then lets go.  Is it something to be concerned about? We don’t know.  There are times when she is crawling and suddenly collapses as her right side gives way.  She lies on the floor for a few seconds, gets up and crawls again, only to have it repeat a few strokes later.  Is she just playing or is something sinister going on inside her cranium? We don’t know.  There are times when she crawls with her left fist tightly clenched.  Is it her being silly or a neurological sign to notice? We don’t know. Perhaps the most frightening was the night she woke crying with a strange jerking and strange breathing pattern.  Was it a nightmare or did she have some type of seizure activity happening? We don’t know.

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Zara has a follow up appointment with a neurologist next week. Will we find the answers for our questions? We don’t know.

What we do know is that she has made tremendous strides in reaching milestones.  In the last month she has gone from only making one sound when babbling to saying “ma ma ma ma ma,” “ba by,” and cooing “IIIIIIIIiiiiiiiiiiiiiiiiiiiiiiii” on my shoulder in the exact cadence I use a dozen times a day when I cuddle her close and say, “I love you.”  She picks out every baby picture and always has to stop in the hallway to point out Grandpa and Grandma Beachy’s picture as she grins and babbles “ba ba ba ba.”  She hums along with music and scrunches up her nose to accompany her widest-mouth grin when she’s feeling silly. She pulls herself to her feet using only one hand to balance herself, stands alone for a few seconds, and once or twice walked along the sofa downstairs.  She doesn’t wave, but opens and closes her tiny hands and says “ba ba ba ba” when we say bye bye and tries hard to play “Where is Zara” except she mostly covers her ears instead of her eyes. 🙂 The day before Christmas she crawled up the entire flight of steps from the basement to the main floor.

You can imagine how easy it is to be certain there is no longer anything to worry about and then suddenly catch something and wonder.  If that four day stay at Johns Hopkins did nothing else, it certainly re-shaped our tendency to laugh away oddities with an innocent, “babies are so funny.” It also made us appreciate her, and life, so much more.  I hadn’t realized such a thing would have been possible.  But every time life digs into your heart with a spade, it opens up your capacity for love.  For gratitude.

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On this first day in 2015, I celebrate the beautiful gift that is her life.  Even with it’s questions.  Maybe even because of it’s questions.  Because without the questions, I might forget how very, very, very wonderful she really is.

17 thoughts on “Ten Months

  1. bethany

    This squeezed at my heart. Having my mother pass away unexpectedly and an (as far as we knew healthy) niece born with trisomy18 who lived only a short time in the past year, I understand a bit about looking at my loved ones in a new light – appreciating them a little more and grasping a little more fully the truth that we only have this moment!

    God bless you as you cling to the One who is the same, no matter what. I hope you find answers and conclusions and miracles. Even more I hope you continue to find Peace amidst the unknowns…
    Bethany

  2. Rosalyn

    She is so precious! Love the pictures! And thanks for the challenge, I want to be more intentional this year in treasuring each moment with my daughters, and realizing them for the gifts they are.

  3. Andrea

    What a blessing! And such a cutie she is! Praying that you find answers. I know what it is to watch your child and marvel at everything she is able to do. My daughter was a difficult delivery. Fortunately, the trauma was all on me, but the nature of the difficulty could have done irreparable nerve damage leaving her arm completely and permanently useless. How grateful we are that she was spared that experience!!

  4. Shannon

    This is a beautiful post. She is just so precious. I love all the little moments you remember and think, Awww how cute, when they are learning all these things. They are just so squishable, loveable and sweet. I watch my baby and think, “Wasn’t she just born yesterday? What do you mean she’s almost 2? Slow down time!” Thanks for the reminder to love every minute of time we have with them!
    Prayers for you as you see the Dr again.

  5. Audrey R

    I am getting a little taste of these kinds of questions and fears with my baby, although obviously he’s dealing with different issues. And I don’t like it. I can only imagine how it is for you all.

    She is absolutely gorgeous, though. And it is so wonderful to see you with a little girl!

  6. Shanda

    One thought kept running through my head as I read this: YOU ARE A GOOD MAMA. I can sense your love and care as you write about your beautiful baby. Praying that all is well, and trusting in His plan and purposes!

    1. Michelle Post author

      Thank you, Shanda! You know how we mama’s are. We give and love and gloss over … and sometimes we forget that and need those affirming words of truth spoken to us. You have inspired me often!

  7. Clarita

    Your little Zara is just gorgeous! What a beautiful baby… I can’t imagine going through what you did this past year, and still not knowing exactly what was going on. I hope this year is a wonderful one for you all, and wonderful health too!! xo

  8. Diane Histand

    Remember God’s promises as you face the uncertainties of your precious daughter. You are never alone, God is with you!!! I can testify! We take our 21yr old to nuerologist Fri and our 15 (just about 16) yr old son to the endocronologist the same day. Going always brings a certian amount of trepidation, but remembering how God has brought us this far, always helps give me courage. God will be with us!! Blessings as you continue trusting for all the moments!

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