Oh goodness, how nice it is to be past Interstage and to be semi-functioning like a normal baby. It's so nice to not have to worry about the germs of winter, the dehydration of not tolerating feeds due to an unhealthy heart. It's been a trying year, and no one can know the journey until they've walked it.
I think the most frustrating part is that he still is delayed. Still behind in areas that continue to cause lack of sleep. He still doesn't turn or sleep well and isn't so good at self soothing. He wakes us up more times in a night than I can count. But, he's so much healthier now that this shouldn't be taken as a complaint, overall I know that I am more blessed than I could even begin to put into words.
When I look back on all that we have been through the past year, I am amazed at how far we have been taken and how much we have survived. By the grace of God we did it, and with Him we made it through.
I have been pushed to the limits, mentally, physically, emotionally. Sleep deprivation is scary and tough, and it is still a struggle.
People look at little C now and think it is all fine and dandy. He looks good, so things should be easy, right? Well for the most part, it is. But, I still need that little bit of grace. That leeway. It is still hard to not get sleep, to make doctors appointments, to realize that each and every PTO hour of a total of almost 12 weeks in the past year has not been spent on vacation or at home snuggling a new baby but around the whirring and beeping of feeding pumps, ventilators, monitors with nurses talking, that time has been spent at a hospital or visiting a doctor. That's NOT vacation.
And I know without a doubt it's not the way anyone else would choose to take their vacation. In short, I'm tapped out at times. I'm tired, I'm exhausted, and doing my best to not burn out. It just seems that people forget how hard the past year has been, how hard I have worked to juggle all things Caysen and doctors appointments, hospitals, family, a left out big brother, a husband and a fulltime job. It has literally been, without a doubt, the HARDEST thing I have ever had to do.
So even though things are going well now? I'm still asking for that little bit of grace. I'm still trying to catch my breath from the marathon of the past year. Is that too much to ask? I think it's not.