Orson, age 3, and me pregnant with baby Ruby in 2015 |
I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.
Sunday, February 26, 2017
When She Tried to Shame Me At Costco
Sunday, February 19, 2017
You Might Be A CF Family If......
Now to the business of the rest of this weeks blog post. I wanted to highlight some of my favorite pictures from this week.
First off we have baby Ruby, who is talking and interacting so much lately that we probably shouldn't call her baby Ruby anymore but we won't stop and you can't make us. She was indulged in some necklaces this week and we had to tackle her to get them off for bed time.
Secondly we had a clinic visit this week, always quite the adventure. Also happened to be the day I figured out how to use the "My Story" on Instagram which I have had fun with. I snapped this picture during Orson's PFT test. He isn't quite old enough for them to get a reliable number but they have wanted him to practice for the past year. Here he is huffing his heart out into this computer to test his pulmonary function. His big sister Maelee is in the background intensely cheering him on. She has just finished with her test and knows the seriousness of the PFT test. After all Maelee knows her PFT's are what landed her in the hospital and what got her out. Its serious business. I love the look of intensity that they both have in this picture. Its a perfect summation of the feelings these CF people feel as they are measured and weighed in so many areas constantly.
This was a sweet picture taken on clinic day as well. Some sort of special connection happens to siblings who get stomach x-rays together.....and I don't just mean the shared radiation exposure (sorry that may have been an inappropriate joke). Really though a strange and wonderful blessing of having more than one kid with the same chronic disease is that they have the opportunity to see the journey from many points of view. I love to see them cheering for each other knowing very well what the other one is going through.
That's all folks I hope that you enjoyed some sweet pics from this week. Stay tuned for upcoming blog posts about the two weeks I created an inordinate amount of work for myself and my husband by picking the wrong word, and how we try to keep our one non-CF child as connected with these three who share 4 hour doctors appointments and hours and hours of treatments together.