A Hard Day

Opening a care package from Gateway                        Riding his Harley

                                                                                                                   A "few" weeks ago :)

Thank you to everyone who commented and who have expressed their love and prayers.  We are so blessed to have such wonderful family and friends to support us on this journey. I know some of you have looked up Mito and Leigh's Syndrome.  If you found any of the things that we did they were anything but promising.  Most of the kids have lots of tubes coming out of their body, some have full time nurses, most don't leave the house, and some sites say patients only have months to a year to live.  However, that is not the case with our Sweet Caleb.  (and I'm believing that will never be the case!) We still don't know so many things, but I do know that today Caleb doesn't have any tubes, we haven't been worried about whether he will wake up tomorrow, and so many things that parents of kids with Leigh's worry about.


But that doesn't mean we don't have our own struggles.  Today was a rough day for me.  Caleb has actually had a pretty good day,and a really good week.  (besides having a little cold, however it has only been a small cough so we are thankful for that) He has had an appetite and has been motivated to play.  A few weeks ago he just sat in his chair and watched TV and then when that got to be too much he would lay on the floor and watch TV.  Someone asked me if the Mito makes him tired all the time or if he sleeps a lot.  He isn't necessarily sleepy all the time, more just physically worn out.  Even if he hasn't done anything.  His cells don't make the energy needed to function properly and so far that is most evident in his muscles.  He doesn't walk and at this point is a long way from walking.  That is not really something we are even that concerned about at this point.  


Anyway, I was playing with the kids on the floor and I started thinking about 8 weeks ago and what Caleb's energy level looked like.  He was pulling up more and crawling around more.  Then he was rolling a truck around but had to lay down to do it, he just didn't have the energy to sit up.  It makes me sad for my little boy that he can't do the things that other 18 month olds can do.  He can't stand up and look through a toy chest without getting tired and sitting down.  He can't sit up straight and play with his toys.  He can't run around outside like he wants to so bad.  He can't ride his tricycle around and chase his sister.  


I try to take each day for what it is and enjoy it with my precious gifts, but some days are just harder than others.