Scar lett is a fr ie nd of Ella 's.  They share the same diagnosis. With her bear in hand, bipap on 24-7, and the love of her family within, Scarlett has fallen ill. She doesn't usually have her bipap on during her waking hours yet now that she is feeling ill it's with her all day and night, working to keep her breathing steady and true.   The goal right now is to stave off pneumonia.  It can come so quickly to those affected by SMA...a simple cold, a cough, or a germ floating carelessly through the air becomes an enemy to our children, threatening their very lives.   Scarlett's mom has reached out for prayers.  She has reached out to all who will hear to keep her darling daughter in their prayers as she and Scarlett struggle ... The season for colds, coughs, and flu is knocking on our doors...it's a time that we face with trepidation and caution.  Kids get colds.  Kids with SMA get more than they bargained for... Stay strong Sca...

We never really know when our time will come to leave this earth, this life, everything we know. We never really know when the time will be for our loved ones to depart. There have been, however, several families this week in the SMA Community who have prepared for the loss of their child. How does one prepare for that? Spinal Muscular Atrophy strikes its victim unknowingly.  It creeps up on the very young and brings parents to a place unimaginable. It throws situations at families that threaten to dissolve the fabric of their lives. SMA grabs hold of daily interactions, holding them prisoner in its grip. This disease is relentless. Four children within the past week and a half have died and one more is on her deathbed as this is being written. A child's deathbed.  An image that is disturbing to us all.   A sigh fills my chest as I contemplate the reality of SMA, a thought that I'd rather not have to face.  It thrusts itself in front ...

SMA is unpredictable.  It leaves us guessing almost everyday.  Each night as we put Ella to bed we wonder what kind of night she'll have.  We have the guidance of machines to help us monitor her slumber and as she is getting older she can, and frequently does, call for us when she needs us. Upon waking we wonder what the day will hold for her.  How will her strength be?  What will her level of frustrations be?  What successes will she have?   As she plays we wonder if she'll be able to enjoy the toy(s) or simply throw her head back in utter frustration over what SMA is doing to her...slowly and methodically. Or is it as methodical as we thought? Ella was classified as a severe Type 2 in terms of her SMA.  The reason for this particular diagnosis is because of her rapid degeneration and loss of motor function early on in her life.  She is one of the roughly 20% of kids with SMA whom experience a rapid decline in their funct...

Today we were fortunate to spend part of the afternoon with a very special family.  A family who is quite similar to ours... They live in Barrington, IL (a little over an our from our house). They have a daughter, Isabella, who is 7 years old (just two years older than Ava).  They have a son, Gavin, who is almost 4 (just like Henry).  And their youngest daughter, Scarlett, is one (just 9 months younger than Ella). Their youngest daughter, Scarlett, has another similarity with Ella.  She has SMA, type 2. Scarlett's mom also has a blog for raising SMA awareness, and she wrote a wonderful post about our play date today.  So I thought I would post a link to her blog. Wishes for Scarlett, "Play Date" Also, here is a video of Ella showing Scarlett around our house... :)

Captured moments. Life has much to do with captured moments.  Whether these moments are captured in a photograph, a video, on paper, or in the memories made.  Capturing a moment allows us to carry that moment with us...forever. Our lives traverse the course of time, being filled with moments that begin to define us.  We seek meaning from our moments and string them together to create our experience of the world, our experience of the life given to us. The moments of our children's lives slip past us in the whirlwind of the every day.  It's often said that "they grow up so fast".  While this may seem to be the case it doesn't have to be.  It doesn't have to pass in the blink of an eye.  It doesn't have to feel like time has slipped away.  Capture your moments. Capture the hugs your child gives and take one more. Capture the laughter your child boasts and fill your ears. Capture the tears your child sheds and ease them away. Capture the...

She could hardly contain herself. She had a glow about her unlike any other time in her day. She was supporting herself and did so for some time...longer than she ever had before. The Ramirez family traveled from Iowa to Naperville, IL to build Ella her own set of parallel bars.   From Iowa. They too, have three children.  They too, have a life that includes SMA.  Their youngest daughter was diagnosed with SMA when she was two years old.  The doctors, of course, said that she (Madi) would never walk.    They were wrong.  Madi does walk.  By herself.  She worked hard, fell often, and persevered.  She walks.  Not 100% of the time...but she walks. When the Ramirez's arrived at our house they quickly got to work measuring Ella and figuring out the best configuration for her parallel bars.  In the meantime, Ella and Madi befriended one another on a closer basis than they had earlier in t...

Every so often we get through the day without feeling tired.  Let me rephrase that... Every so often we get through the day without feeling exhausted.    Even that attempt at expressing the feeling falls short. It's not a matter of sleep.  We wish it were.  That would be an easy fix.  If SMA was keeping us up at night with frequent sleep interruptions we could hire a night-nurse to take the overnight shift.  That's not the case, however.  Ella is waking up only twice, maybe three times a night.  She needs to be turned in her sleep and her feeding tube needs to be shut off and flushed.  All of those things take no more than a minute... no need to hire someone for that...w e do them and go right back to sleep; just as if one were visiting the bathroom during the night.  No, it's not a matter of sleep or even the quality of sleep.  We both find deep sleep through the night; we dream, toss and turn, and have a hard time wakin...