Avery Grace

Avery Grace

Friday, March 21, 2014


"Our family is a circle of strength and love, with every birth and every union, the circle will grow, every joy shared adds more love, every crisis faced together, makes the circle stronger."
Author: Unknown

As time tends to do in busy families, the last 8 weeks since we welcomed our precious son have flown by in an instant.  Paxton Graham Beeson was born via c-section on January 10th, and in a moment, our hearts grew bigger and made room for one more little love of our lives.  Surprisingly, rather than adding stress and chaos to the mix, sweet Pax (the Latin translation of Pax is “peace”) has brought us just that.  Peace.  A calm to our often stormy lives.  His mere presence requires us to slow down, and as with all of my precious babies, my favorite moments lie in the hours spent every day and night nursing and staring at this innocent, perfect and adorable baby. 

As is par for the course in our household, there are always several things going on to keep our minds and bodies busy, and even a new baby doesn’t stop the activity! 

I am so happy to report that in the last few months we have seen some really positive changes in Avery’s ability to connect to other people.  She REALLY seeks out eye contact and smiles all the time now, and is doing a great job guiding us by hand to what she wants and even pairing that gesture with a hum sound and a gaze from her big, beautiful blues.  I have no idea why she has had this sudden boost in awareness, but I am so (cautiously) optimistic!  For many of you who haven’t experienced the roller coaster of constant developmental regressions, you may not know why I am cautious about my optimism, but for those of you who have, you know that sometimes it helps to protect yourself from getting TO excited as sometimes these skills leave our precious kiddos as quickly as they arrive.  But, nonetheless, I am relishing in our new found connection to our sweet and awesome non-verbal kiddo, and enjoying every gaze and gappy toothed grin. 

Kaylin, our 5 year old firecracker, LOVES being a big sister again and asks to hold Paxton constantly.  She is such a leader (some would call it extraordinarily bossy), and is loving gymnastics and school.  Kaylin’s teachers, caregivers, and therapists (as well as mom and dad) have always had suspicions about her having ADHD, and after watching her struggle to attend to school and instruction from extra curricular activities, we decided to have her formally tested, and low and behold, in the most UNsurprising news of the year, she does indeed have severe ADHD.  We are making some changes that will hopefully help her learn and flourish, and maybe not be in constant trouble around here. 

Presley has also taken quite well to her new found role as “littlest big sister” and continues to thrive in preschool and is also about to start gymnastics. Presley is quite the comic, and keeps us laughing and smiling everyday.  She takes her time with just about everything, and thankfully, is strong enough to push back when her big sisters take over.  There is quite a bit of fighting that goes on between the girls, but more than that I am pleased to say there is lots of happy laughter and playing too. 

We are extraordinarily blessed to report that our now complete family is doing well.  We had a BIG scare for a few weeks as Paxton’s newborn screenings (which we repeated) initially did not detect T-cells, which would have meant that we had a major health crisis on our hands.  Thankfully, after further testing, we discovered that he is JUST fine! He has an umbilical hernia which is no big deal, and may need some orthotics for a slightly clubbed foot, but no one is born “perfect” and so far he’s really doing fantastic and changing daily.  His big gummy smiles are the highlight of our day. 

When I started this blog over 5 years ago, I was certain that I would be documenting all sorts of progress for our sweet, disabled daughter.  It was before facebook had really taken off, and I was going to use this site to share her triumphs and successes.  Unfortunately, that’s not exactly what has transpired, but I will say that social media has really provided me with an awesome support network as we trudge through this journey as special needs parents.  It is incredibly heartwarming to see so many of our friends share in our happy times and offer words of encouragement and support when we need it most.  It provides me with a great level of comfort to know that our “friends” will teach their children to love and support people like Avery as the years pass, and are taking an interest in making sure her voice is heard, though she will unlikely ever actually speak another word.  Rett Syndrome has taken so much from us, but it has also provided us richness beyond measure in the ways of perspective, love, tolerance, grace, joy, hope and lastly, peace.  

photos courtesy of blessedbphotography.