Tuesday, May 23, 2017

Perseverance, little wins, little set backs....

I didn't realize how much time had passed since the last entry.  Keeping up with Liam has become a
lot more involved.  This little being is such a joy!  He is mastering his steps for walking, getting 14 steps as the record (his physical therapist was counting, I was squealing).  His favorite 'walk' is between the couch and an oversized chair, though he is getting adventurous and wondering a little further.  He is almost to the point where he is comfortable going from a 'bear crawl' to standing, though sometimes the core muscles just don't want to hold!  He has received a few bumps and bruises, most recently at the cardiologist office today while chasing a crayon.  His love for music is deepening, we had 3 guitars playing and he went from one to the other, dancing the 'Liam jig'.  His favorite song is 'The Itsy Bitsy Spider', he is having fun with the hand motions for sure.  In June he will participate in a local dance recital, his class' dance is actually an obstacle course, since he loves to dance, there may be an impromptu step or two.
Liam and I took a quick trip up to the Bay Area to visit my brother and his family.  We had a wonderful visit and Liam had some older kids to help give him incentive to walk, and some courage to explore going down heights (i.e. head first off the bed, thank goodness only 12 inches high).  Liam is a fantastic traveler, making friends with anyone he can.  On the way home, the flight was delayed an hour (2 past his bed time) so he slept until 15 minutes before touch down, woke up, smiled, and waved at our neighbor before closing his eyes again.  Watching him interact with people, makes my day!  I will feel him wiggling around, and realize he is double waving at someone behind us, making a new friend.








And being part of life, we have our struggles.  Liam is still not taking in his nutrition orally, he has taken in 3 1/2 ounces of food, milk, etc. in a sitting and that was wonderful, but has not done that again.  He usually takes in about an ounces or 2.  When Sean's job changed we didn't have insurance and decided the time had come to find out if Liam was eligible for something called Long Term Care.  Great news, he is, not so great news, I am in a stand still with getting all the services put in place for Liam.



I never thought I would have to fight so hard to get what I think Liam deserves.  And as I am reminded, I am not fighting, I am advocating, there is no bad guy.  Of all the lessons motherhood has brought to my attention, using my voice, asking for what I need or Liam needs, has been most prevalent.  Of course, patience is a close second, I think that one was a lesson from my own toddler years!  Right now, being patient that some of the requests that I have are outside of the box, that Liam is a whole being and needs both Physical therapy and Feeding therapy, and remembering that this little being has a journey I am only given tidbits of clarity around all test those ounces of patience I have.  Thank goodness for the amazing family we have and for friends who can help to shift some of the jumbled thoughts running through my head.




So as I ramble tonight, I focus on the joy that Liam is.  Today, the cardiologist shared that Liam's heart is doing fantastic and we can start spreading out his followup appointments.  What a breath of fresh air!  Amazing that just a year ago, we were learning how to give Liam his feeds, picking him up without raising his arms, and monitoring any infection warnings or abnormalities.  Today, we are chasing a speedy crawler as he races to take the clock off the night stand. Watching Liam push a book across the room to be read, makes my heart warm.  Hearing the giggles of both Sean and Liam as they play in the other room deepens the love I have for both of them.  And as I sit, typing this out, with a quiet house except the whirring of Liam's feeding machine, I feel a rooted contentment that whatever we have in store for the future, we are always guided, we are always taken care of, and there is always time to play!