Hearing of the loss of a child strikes a chord and hurts my heart whether I know the child/family or not. Recently, our dear friends unexpectedly lost their infant son. The pain of that loss brings me to tears on a daily basis. Such a precious child who in his short time with us here on earth brought so much joy and taught everyone about strength, determination and a will to fight. I am one of the lucky ones. I knew him. I held him. I loved him. He suffered from a debilitating form of epilepsy. Through the pain, his mom and dad have started a fund to help raise money in his name for further research at UT Southwestern. His lifelong fight has already taught doctors how to better help children born with his same condition. With more research, future children will have a better chance of seizure control and survival. What a blessing sweet Knox was to us and will continue to be for so many future children & families.
This recent loss reminded me of something I push to the back of my mind and try not to ever think about. Life expectancy. I live in reality and I know Drake's life expectancy isn't long. He has already beat what we were told & he continues to defy all odds! This is why that thought is pushed to the back of my mind, close up and locked away. The future for everyone is an unknown and I don't need a dark looming cloud hanging over my sweet boy. We live our life day to day and cherish each and every moment. That is my reality. Our sweet boy is already 4.5 years old! He's walking with the help of braces and equipment! He's communicating through electronics! He's learning and exploring through technology! The accomplishments we are getting to witness for our Drake make my heart swell with happiness!
Our busy life...well, to say we are constantly on the go would be an understatement to say the least...just ask our nurses. Sadly we just lost one of our night nurses who has been with us for over a year. There is no possible way for me to explain what it's like to have nursing in your home 24/7. Unless you experience it first hand, it is simply not comprehensible. Drake and the family get used to them and they get used to us. Adjusting to change takes time for all of us. Plus, this time we are doing some nurse shuffling. We have a day nurse moving to nights, a one night/week nurse moving to one day/week. A day nurse picking up an extra day, which she will split that shift with our newly hired day nurse. See, even though this makes sense to me, I can see it sounds rather confusing written out. We are excited to have found a new nurse to join our team and she will begin with us in a couple of weeks. In the mean time, our other nurses have been picking up extra shifts and I have been working the shifts not covered. Do I sleep? When I can.
My pregnancy is moving right along. We are approaching 29wks this Friday. It's kind of hard to believe we are already in the 3rd trimester - 7 months. I have to admit week 25 was eerie for me. It was with Hayes, too. Getting passed the point of my emergency c-section with Drake & Kennedy, the event that forever changed our lives, is an accomplishment we quietly cheer about. Each week after that is a blessing and we internally celebrate being one week closer to full term!
My family...I really can't say enough wonderful things about my family! Starting a business is hard. We knew it wouldn't be easy, and we knew it would be time consuming. My family's willingness to help out with the kids each and every week is what has made getting our business off the ground possible and successful. Yes, we are aware of just how lucky we are to have the supportive family that we have. If I could change anything, I would have them live much closer.
Cherish each moment with the ones you love! Don't let the craziness of daily life take away from the precious moments with the ones you hold dear.
Breakfast at Mimi & Poppy's!
On a Roll!
Reunited with Drakey!
Lunch date with Daddy!
Hard at work!
Morning snuggles with Daddy!
I LOVE this photo of Kennedy & Elizabeth!
Tea Party for Two! Cousin time!
Feeding the geese!
Our little Builder!
Uncle Aaron bought her the biggest ice cream cone ever!
He's definitely braver than I am with ice cream in the car!
This boy loves his daddy!
He's constantly entertaining us!