I know and I feel terrible.  I have kept you all in the dark about everything.  Not because things are bad, we are actually doing well.  Meaghan did re-start school with everyone after Spring Break.  She was really happy about going and has managed to stay healthy enough to miss very few days since then.  There have been a couple bumps in our road but nothing to keep us from looking forward.  

I am going to mostly use pictures to tell the story of the past few months.  So many things have happened that I may either run on and on or leave things out.

Barney is the one who initiated this pose.  He is a really sweet boy and he adores Meaghan.  This was taken within the first week of Meaghan returning to school so you can see how much they missed each other and how tired they both were. 

Sometime during the winter Meaghan told us that she wanted to play softball this spring.  What a shock for us.  After spending her entire life watching her big brother play baseball she let us know on many occasions that she was not at all  interested in playing ball.  But I am not going to say no to trying something so I signed her (and Jason) up.  Jason coached and Meaghan played and it was a wonderful experience.  They both enjoyed the sport and spent some quality time together.  There were quite a few girls on the team who go to the same school with Meaghan so it didn't take long for everyone to get comfortable.  We are looking forward to many more softball seasons.

Barney is still everything I already talked about and more.  Over the past few months he has really matured and developed a personality that can hardly be put into words.  His need for long walks and play is mostly being met so all that he is around home is just who he is.  He will take something he shouldn't have from time to time but we all understand he's looking for attention.  You can almost hear him saying, "Look, look at me!  I have your______.  Just try to take it back."  He goes to almost all the kids games because he is well mannered and a friend to everyone.  He is also more protective and dominant around the house and the 7 people he calls his.  We laugh at him when he loses a toy under the furniture and he uses his Big Boy bark to let you know but then he'll whine like a baby when one of his friends walks by outside.  He has the most expressive face and he is just so darn good looking.  I tell him not to let it go to his head but I am the one who needs to be careful.  He is barely 7 months old now, weighs over 50 pounds and stands about 23 inches high at the shoulder. 

You can't tell from the picture but Meaghan is sitting in a tree she learned to climb into all by herself.  She fought and fought to do it and with just a few suggestions from me she managed to get up and down on her own.  She sat up there for a good 30 minutes, probably just to annoy the boys who wanted to climb up after her.  I don't know where she'd get an idea like that.  Once the coast was clear she came down and went up until her hands were too sore to climb any more.   

There were a few kind of major changes in our house too.  It seems wrong of me to put these two things together but they happened so close together I find it a little funny too.  The cone is on Barney so he doesn't chew the stitches out from being neutered.  Meaghan's hair is not pulled back or tucked away, she had it cut.  She had more than 13 inches to donate.  That makes her third donation to Locks of  Love.  She thinks she would like to keep it short for a while and I told her that would be nice.  It still amazes me that she feels so strongly about helping others this way.  I think it is good that I am still amazed by her generosity and compassion, it means it is still real. 

 Okay.  I mentioned that we had hit a few bumps in the road.  Most of them had little to do with Meaghan's physical health, the thing most people think of or look out for when facing a chronic illness.  The bumps that had the greatest impact on our wellbeing were of a behavioral/emotional nature.  I am still uncomfortable or embarrassed about the specifics.  I also do not want to say anything Meaghan could read and be upset with me for sharing.  Once I knew we had a problem I had to talk about it.  Then I had to admit that it was beyond my comprehension and skill to handle.  Then sift through my options, evaluate, re-evaluate and redirect many times.  I guess what I am saying is that we've been dealing with this for quite a few months now and it has had a significant impact on our daily living.  I am sure that somewhere along the way I was told or warned that CF is so much more than a disease that impacts the patient's physical self.  BUT, like in so many other things, I became so overwhelmed by one aspect of living with this terrible disease that this issue was allowed to grow uninterrupted into a real problem.

That is all background for what good news I have to share with you.  Dealing with our problem was going to require professional help.  We have done the Kennedy Krieger Behavioral Psyc thing and most of it was helpful but no way was Meaghan going back there.  She met a woman who I believed could help but Meaghan refused to go back.  So it was recommended by a friend to try an alternative therapy like art or music.  I asked around, checked with our insurance company and kept coming up empty.  Totally by accident and feeling out of options, we met a gifted therapist who was right under our noses.  For the past two weeks Meaghan has been seeing Ms. Michele for horseback riding lessons twice a week.  I noticed an immediate change in Meaghan's behavior with our very first visit.  I am thrilled to be sharing this experience with her.  As a kid I rode all the time and it never occurred to me to have Meaghan try it.  The  trust, discipline, responsibility, and control needed to be a good rider are just the things Meaghan needed in her life.  I can not remember ever seeing Meaghan respond to someone or something the way she has with Ms. Michele and Callie.  She is so confident and grown up when she is out there and she has carried that with her once she leaves the stable.

So, I will leave you with a few of the pictures I have of Meaghan and "her" pony Callie and a reminder that what you see when you look at my little girl is just the surface.  She is a little girl who fights an unimaginable battle against a disease that you can not see.  She looks strong and she is but she is also at great risk of becoming too weak to breathe.  She goes to school like other kids but has to miss massive amounts of time due to illness.  She runs, rides a bike and plays but also depends on a feeding tube and nutritional supplements to keep her body strong enough to do it.  Meaghan is at an age now where she understands more about what it means for her to have cystic fibrosis and she doesn't like it one bit.  For now I tell her that it is okay to feel that way, she's right, it stinks.  I keep my fears about her future tucked tightly in my heart.  There is so much more for her to learn about living and fighting for every day with CF.