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How's it going for Mr. B...

Monday, June 9, 2014

He has done it.  Bennett is fully a "big boy" and out of pull-ups completely, just in time for summer. He is soooooo proud of himself!! :)

Brian and I thought this time would never come, his being out of diapers, but it eventually did.  Similarly, several years ago while at the Feeding Clinic, we thought he would never learn to eat, but, then too, he did.

Bennett finally being potty-trained reminds me how life might present Bennett with more challenges than it does for others. But, each time, Bennett rises up to overcome every single one.

I am so thankful that God has provided Bennett with the strength and ability to keep facing and overcoming each challenge that has been put before him (from a bursted colon in utero...to a "failure to thrive" diagnosis...to a bout with the C.diff. infection...to issues with rectal prolapse).

These days, Bennett is a very well-adjusted 4-year old.  He enjoys going to school, has lots of friends and a great sense of humor.

We are delighted that lung issues with Bennett's Cystic Fibrosis continues to stay at bay.  We don't know how or why.  But we are thankful for every single very good day he has been given.  We know his healthy days are numbered so we count them as huge blessings.

Despite his consistent breathing treatments every morning and evening...and despite that he is put on a feeding pump while he sleeps each night, he is a normal little boy who has most recently enjoyed playing t-ball, visiting the beach with his grandparents and pretending he is Spiderman.


Just today, Bennett had a follow-up appointment with Pediatric Surgeon from Scott and White in Temple.  We hadn't seen her in quite some time.  She was visibly surprised to see how much Bennett has grown.  When Dr. Perger learned Bennett is now potty trained, she was even more delighted!  

Dr. Perger shared with me today had had doubts about his ability to be potty trained one day.  She said that she had not known if the surgery would work.  She said rectal prolapse in children is rare and that, if left untreated, can cause the sphincter muscle not to work correctly.  (I had not realized today just how worried she was that he wasn't going to be able to have continence.)  

So, after our visit, as we said goodbye to Dr. Perger, I became tear-eyed, overcome by her positive response to his growth and development.  As his mom, I don't always have the opportunity to sit back and really notice how far Bennett has come.  Today, through Dr. Perger's eyes, I was able to see Bennett's progress.  Although once a tiny sick baby, today, Bennett is thriving, for which I am incredibly thankful!!


Our attention these days has been spent more on Oliver.  Oliver continues to deal with mild anxiety so Brian and I have recently reached out to some experts in child anxiety so that we can learn more about how to address his emotional needs.  Most people would never notice Oliver struggling.  He has learned how to more very effectively deal with his anxiety.  But, as he has developed broad language skills, he has begun to share with us what is going on inside him and to ask for help.  We are so thankful Oliver can tell us he is feeling distress and we can respond with outside support.  

We are always aware that even when CF is controlled, Cystic Fibrosis affects our entire family, not just Bennett.  During a recent conversation with Oliver's play therapist, the therapist mentioned he would like to explore with Oliver his "role" in our family and how he might see his "job" as the healthy child and the big brother of a child with CF.  I really appreciate a conscientious therapist to help us monitor how Oliver is handling all that comes with having a brother with a life-threatening disease.






I should probably mention our chunky monkey Avonlea!  Babycakes just turned 10 months old and is on the cusp of walking.  She has 6 teeth, prefers real food over baby food and loves the heck out of her big brothers.  Oliver is a huge help with her and has the ability to make her smile more than anyone else. Bennett cannot wait for the day when she can actually play with him.  For now, he loves to lay on the floor and let her touch his hair and climb over him.  

She is such a chill baby.  She hardly ever cries, even when being put down to sleep.  In fact, she's an amazing sleeper.  She sleeps hard and prefers sleeping in.  The only time we really see her get very vocal is with food.  She *loves* to eat!  Her favorite food: ice cream (she's clearly a third child if she's enjoying ice cream at this age)! :)


As Bennett was going to sleep the other night, he asked if I would say prayers with him.  He closed his eyes, folded his hands and said, "Dear God, thank you for my superheroes, Spiderman and Batman, for fixing my Cystic Fibrosis."

I felt both sadness and joy at the same time to hear this little prayer. I felt sadness because I know that superheroes aren't real.  And, at this point, neither is our ability to fix his Cystic Fibrosis.  But, my heart felt a sense of joy to "overhear" his sweet heart: He thanked God for sending heroes to help make him better.

Right now, Bennett thinks the superheroes will do it.  But, in time, he will learn that the "superheroes" that are going to make it happen, are our friends and family who walk at his CF Walks and who donate to the Cystic Fibrosis Foundation on his behalf.  His superheroes are those around him who love him.  I agreed with Bennett, I am also thankful God have him superheroes to fix his Cystic Fibrosis - people like you.

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