After another resurfacing of that dreadful meme I wanted to write a post to my kids. As time continues to pass and the meme continues to resurface the more I realize this could very well be a part of our lives forever. That saddens me and angers me because there was never a need for it. There are people that caution be careful what you post on the internet. Posting a picture of my smiling child is hardly inappropriate, but I won’t digress down that road right now; to each their own. The purpose of sharing our story is to spread hope and awareness. Tolerance and acceptance does not come from hiding from the world because you’re different, it comes from proudly standing up and telling the world that you are a part of it too.
All three of my children – you are all different, on the inside and the outside. There will be times when others take aim at your differences. They will make you feel like you have done something wrong, they may make you feel like you are not good enough. No matter what, I want you to know this: The actions and words of others are not a reflection of you – it is a reflection of them. Take notice of how people treat others, and be mindful of how you treat people. When others set out to make fun of you and hurt you that is on them. Hold your head high, look into your heart, and know that it is because of our differences the world a beautiful place to live. Feel sad and sorry for them that they cannot see the world this way, and know that they are the ones missing out. Continue to be the best you, and never stoop to their level.
People can change, that is another beautiful aspect of being human. Sometimes our differences scare people because it is new to them, give them the opportunity to learn who you are before closing the door (but please, don’t ever be afraid to walk away and close the door). Continue to be positive and love one another. Stare hate and negativity in the face with love and tolerance. You will help transform the world around you. Always, always, always be proud of who you are. Your differences are your strengths, not your weaknesses. Don’t ever let another person make you feel this way. As you continue to grow in the world take this with you; always be mindful and kind to others, and always stand strong and be proud of who you are.
Life goes on. Theirs, yours, ours too!
The past month a lot has happened here at home. In March Jameson had his follow up sleep study from his surgery in December…not good. He still has severe OSA, his O2 sats were in the mid 60’s instead on 50’s, and his hypercarbia (CO2 levels) were in the 50’s instead of 60’s…Mild improvements, but not nearly enough to celebrate. After following up at the sleep clinic we did another titration study to see if his CPAP levels maybe decreased from the surgery (he was at 11cmH20 of pressure to keep his O2 sats above 85). Again, disappointment, his levels actually went up and he needed 13-15 cmH20 to keep his sats up. Jameson wears his mask every night, he has no issues putting it on and climbing in bed, but he usually only lasts between 4-6 hours. Once he wakes up in the middle of the night he won’t put it back on. That means there is another 6 hours of sleep without wearing the mask. There are so many issues to having his O2 levels drop and it breaks my heart the stress this little body is under. So, essentially we are back to where we were a year ago with the recommendation of Jameson getting a trach. We are meeting a new ENT that is hopefully on the same page as Dr. Fearon and we can get this OSA under control. It is terribly frustrating to deal with the back and forth of doctors with varying opinions, but I am confident that we WILL get this sorted out by the end of the summer.
At the same time Jameson has been doing SO well in speech and occupational this past year, he is really growing up and I love watching him mature. A few weeks ago his therapy clinic had a spring event for all their kids. I took Jameson and Jasper, and I watched as Jameson fearlessly climbed through this huge bounce-house obstacle course. I didn’t have doubts that he could do it, but what surprised me was Jasper’s hesitance. At home Jasper is our fearless daredevil. Keep in mind also that they are now the same size, Jameson weighs in at 28 lbs, and Jasper is 30 lbs, but Jameson still has 2 inches in height on him (they are about 2 years apart). I watched as Jameson climbed the ladder looking back to encourage Jasper – but Jasper got scared and climbed out and came to me. I just took a moment to appreciate that they are the same size, but Jameson is definitely the older brother.
I watch them grow, I watch them fight, and no matter what the future holds, trach or no trach, I love watching them be there for one another.
That’s it for now…