He Restores My Soul

“The Lord is my shepherd; I shall not want.  He makes me to lie down in green pastures; He leads me beside still waters.  He restores my soul; He leads me in the paths of righteousness for His name’s sake.  Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me.  You prepare a table before me in the presence of my enemies; You anoint my head with oil; My cup runs over.  Surely goodness and mercy shall follow me all the days of my life; And I will dwell in the house of the Lord forever.” – Psalm 23

Last week was a tough one.  I said goodbye to my precious Grandma and headed to Children’s Hospital the next day for a sleep study with Eliza.  I had been putting it off for months, so I was committed, but the timing was anything but ideal.  I don’t know if it was the grief I was still moving through, but everything that night felt especially difficult.  The study itself started several hours after Eliza’s bedtime, and nothing about it felt like a “typical” night’s sleep for either of us.  She was covered in dozens of wires and sensors and wrapped in a mummy mask, and she was not happy about any of it.  Since she wasn’t able to wear the hip brace she has worn to bed for months now, she was also able to move around quite a bit more.  I was told to bring her back to her original position whenever she flipped to prevent her getting the cords wrapped entirely around her body (which happened a lot), but every time I did, she woke up and cried all over again.  It was traumatic and exhausting and felt like a complete fail.

But there were also tender moments, and I’m hoping that in reflecting on them here, I will ease my grip on the fear of having to to it all over again each year.  Eliza tried to imitate the shhh sound I kept making, something she’s never been able to do.  And the looks she gave me as she struggled to pull at everything hindering her were both heartbreaking and heartwarming.  She was looking to me, trusting me, taking comfort in my presence.

I “slept” on a bed beside her, and during the night, she would sometimes reach her tiny hand out towards mine.  I know she was scared and everything was so different from her cozy crib, but we would lie there holding hands through the cold metal bars, and she would close her eyes and go back to sleep.  And in those moments, I just knew that no matter what, we could do this.  We could get through it because we could get through it together, held by a God whose love and grace is bigger and stronger than our discomfort and fear.

When my grandma finally surrendered her battle with cancer, it was holding the hands of my aunt and uncle as he read the 23rd Psalm to her.  Her once ragged, difficult breathing calmed, and she passed peacefully into the arms of her creator.  I can’t tell you how much comfort it gave me to hear that story…knowing her transition from this world into the next was filled with a mighty love and a gentle promise.

Yes, both things were hard…it is never easy to say goodbye or to watch your child struggle, but I am so very grateful for these incredible ladies and for the reminders they gave me last week (and many times before) that no matter what, we can trust in God to restore our souls and carry us through!

If You’re Happy and You Know it….

“If you’re happy and you know it, clap your hands!”

Just thought I would give a little update on Eliza and the amazing strides she has taken lately.  I feel like it’s all happened in a short burst of time, but she is now clapping her hands, waving hello and goodbye (and sometimes just for the heck of it), and even army crawling across the floor towards one of Amelia’s coveted treasures.

I remember being thrilled with every milestone Amelia hit when she was doing the same things as a baby, but there is something really special about watching Eliza accomplish each new task.  I guess maybe because of all the worry I held in my heart when she was still in the NICU that she may not get here.  I don’t like to admit the dark fear I cried through in those first weeks and months…maybe it’s guilt, I don’t know.  But I remember vividly the moment a pediatric neurologist talked about her being slower on the monkey bars and feeling like I couldn’t care less if she was going to be slower, I was just so overwhelmingly grateful that it was even a possibility she could do it!  It was before I knew her diagnosis, but learning about her PWS didn’t quell all the doubts and worries I still held.

And now, I’m just blown away by this determined, engaging little person in front of me.   She’s so proud of herself in her moments of accomplishment that she often becomes distracted by the smiles she shoots to each person in the room, seeming to say, “Did you see that?  Did you see what I just did?  I am amazing!”  And she is.

Perhaps even more fun is the way Amelia cheers her on, constantly getting her new things to crawl towards and crouching beside her with prompts of “How big is Eliza?  So big!!” and “You can do it, Baby Sister.”  Be still, my heart!  That’s not to say Amelia isn’t sometimes a little too excited about her sister…Eliza often sees her coming and responds with equal parts squealing giggles and then sudden terror when a “hug” becomes more like a “squeeze.”

Parenting is like that too…it can be terrifying and so exciting all at once.  Sometimes it feels like fighting a hard battle, but so often it feels like walking through life with with inspired, childlike eyes all over again.  We see magic where we once saw only mundane, and we are transformed by that.  Suddenly, clapping your hands or reaching a beloved toy is a victory worth celebrating with cheers and hugs.  And when we add all that up, it makes a life worth celebrating!