Skip to main content

Tears of Joy

Today was Abby's first day of Pre-K at our local elementary school!  She did great!  We walked to the door just as the bus was letting off.  Abby said goodbye, joined the line, and walked right in!

I did stay in the building (since the nurse was going to be out), making copies for the 3rd and 2nd grade teachers and pulling a few groups. She didn't know I was there, and I kept it that way!  She did totally fine, and the biggest "issues" were that she wouldn't sit in the chair they provided her per her IEP (she can sit where she wants to sit!  It just needs to be available) and she didn't want to sing.  I do believe the child was showing her sassiness right out of the gate.  :)

A lot of people asked me if I cried.  Yes, I did.  But they were not tears of sadness that she is growing up.  They were tears of pure joy and thankfulness that we have made it to this point.

You see,

When you cried because you couldn't get your colicky baby to stop crying, I was crying watching my infant daughter struggle just to breathe.

When you were frustrated trying to set up a pack-and-play, I was frustrated trying to complete a competency exam on home ventilator care.

When you cheered as you watched your baby take her first steps, I cried in disbelief because she was never supposed to walk.

When you fussed at your child for talking too much, I spent hours learning sign language, programming communication apps on the iPad, and repeating words over and over again in an attempt to get her to communicate in any way.

When you signed your kids up for day camps and summer activities, I cuddled next to my daughter and stroked her hair as she writhed in pain from yet another surgery.

So, when you cried over how quickly time flew as your child went to school for the first time, I cried happy, thankful tears in the hallway with a dear friend and coworker as we marveled at the miracles God has done in Abby's life.

I know full-well about the time we have had.  It has been filled with tears, love, hope, and a whole lot of prayers.  We have spent over 150 nights together in the hospital.  She has had over 50 prescriptions for pain, breathing, and eating.  She has had over 100 feeding therapy appointments, over 200 speech therapy sessions, close to 150 physical therapy sessions, and an average of one medical appointment a week since she was born.  That is roughly 342 appointments in 4.5 years...and that is conservative.

Yes, I know how we have spent our time getting to this point.

Would I do it all again?

In a heartbeat.

Because though her young life has been spent enduring so much more than anyone should ever have to in a lifetime, much less just 4.5 years, it has also been filled with love.

So. Much. Love.

I am proud to call Abby my daughter, and I am SO very thankful to everyone who has gotten us to this point.

To my family, who has stood by us, cried with us, prayed for us, and cheered Abby on from the beginning

To our sweet NICU nurses and the many surgical nurses we have met who have cared so lovingly for my girl in her need

To our wonderful "A Team," Tracey and Carrie, who taught us SO much and gave us so many tools to help Abby develop

To Abby's first preschool/MMO teachers, who gave her a chance when we weren't sure how it would go...and helped her to flourish!!

To Abby's feeding team, who pushed her (and us!) to get her to where she is with her nutrition

To our amazing pediatrician, who has done SO much for our family and who has really watched out for Abby

To all of our awesome surgeons and specialists who have taken good care of my girl on the operating table and in the exam room

To Dr. C., who has given us a reason to have a hope for the future

To every other therapist and medical person we have encountered in this journey

To our RMH family, who has shown us so much love and support and who has given us our Baltimore home

To all of the friends who have supported and loved us along the way

Most importantly, to my God, who has created Abby for a purpose.  We know she is fearfully and wonderfully made in Your image and are loving watching her story unfold in front of us.

To all of you...thank you for helping us get this far.

Today was a beautiful day.  :)


Comments

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the crayons.  Caleb put small pieces of crayon in each m