a letter to my kids

      I don't write a whole lot about my oldest children very often,  I really try to protect their story as their own to tell. But  I want to tell you about the absolute joy I feel in parenting my teens and middles these days. The fun we have together is more than anything I could have imagined, and the ways in which they inspire me are countless.  I never thought my kids would understand so much medical jargon. With out a doubt right down to my 7 year old they understand things that most never even know about. They all know how much of a flush Henry gets before and after a feed, they know his volume intake, they can program his pump just as well as us. They can attach his mic-key extension, understand his weights etc. really it's quite impressive. I quizzed them before I sat down to write.

We are coming up on a year of this crazy life change, and my dear children I see the tears you cry when a new set of symptoms means seeing another specialist, and we don’t know how many times we’ll have to travel to get to an appointment there, how many years we’ll need check-ups with that particular specialty. You guys have done amazing and I am so proud of all of you.

I see your frustration and sadness when you witness another meltdown, or when you are told about another surgery, or have to endure your sibling being in the hospital yet again. I see your struggle to help out when you’re asked to in situations where your dad and I aren’t there and other adults ask you to step in when they don’t know what to do. You all have grown in so many ways this year and I am honored to be your mom.

I love who you guys are becoming. I see your compassion, kindness, and sensitivity to others’ feelings. You are wise beyond your years. God is going to use these experiences that cause you the most pain now to continue developing character traits in you that will be invaluable to you both now and as an adult.
 I am in awe of your love for each other.
You are amazing. And don’t you ever forget it.
I’m here for you. I love you every bit as much as your sibling, and I want you to know that I’m here for you too. We never know how much time we get on earth so lets make the most of every moment!