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Harper

Harper's arrival and journey into life

Latest journal entry

Wednesday - March 15

I’m a bad friend. You don’t have to drop hints, or think of some nice way to say it. I’m pretty self aware of where I stand with most people on that subject matter and I’m somewhat OK with that. I’m not really OK with being a bad friend, but more so that I’ve accepted the truth of it and the fact that there isn’t much I can do to change it right now. You see these families with lots of kids or kids with unique needs and how they just seem to fade away into a memory. What was once having everyone over to cook dinner or to watch a game or going out on the weekend as a group has become something completely the opposite of all those things. Now the best hope you have of catching up is passing by at church, or seeing an update on facebook. I catch up on a lot of people’s lives at 10:30 at night while I sit up with Harper tending to her feeding machine. Unfortunately, that’s not exactly sharing life with anyone. My laughs and smiles don’t ever make it across to you, and my hurt and sympathy do nothing to warm or uplift you and your family going through trialing times. No, at 10:30pm I’m watching the world through a glass bubble, and I don’t even know if I’m looking out from the inside or looking in from the outside. Regardless how you look at it, it’s disconnected.

I’m sorry for being a bad friend.

Know that those families, like us, who try so hard to keep heads above water and wheels on the wagon have not forgotten about you. We miss your friendship in so many ways! We promise we aren’t just burning the time away doing frivolous things with our lives. We aren’t hitting the town every weekend, or dragging our kids to every sporting event we can cram them into, or shuttering the windows and locking the doors to keep the world away. No, it’s not ever quite like that. Really it’s nothing like that, or we would be making changes to where we were as a family. An old friend with a large family told me not long ago that they don’t make time for good things, they only make time for the best things. There’s a lot of good stuff we miss out on, but it’s because we try to focus on the best things. Right now that’s squeezing every last minute out of the day to spend with the kids...wrestling around with the boys, doing therapy with Harp, tumbling and creating with Hayd...things that bond us to them. Friends like to be around other friends, but it’s not crucial to life’s progression like the time of parents being around their children at a young age. I’m a bad friend because I’m trying to be a decent dad. It doesn’t always work out that way, and just because I make time doesn’t always mean I make the best of that time, but I try to create those opportunities for cultivating those moments set aside for family.

One day this phase of life will pass, and I hope that we get back to those days of kicking back and taking it easy with all our friends. In the meantime don’t hesitate to still call us, or visit, or whatever. You may not get immediate responses but it won’t go unnoticed. Adult interaction is very refreshing when you are around 4 little kids so much!


A list

-We have 5 therapies a week! Woohoo! This is hopefully, dear Lord, hopefully the last hurdle to getting the Katie Beckett help. Medical costs never stop and these therapies are hitting us hard at this point. If we don’t get the KB then we will have to figure out which therapies to keep and which ones to cut. BCBS only helps with so many therapy sessions per year so once those are up then it’s really going to get ugly for us.

-Throwing up is getting better! She still does it some, like tonight. Bless her heart, it’s such a mess and just sits in her eyes and nostrils while we scramble to get it cleaned up. No fun.

-She is taking some baby food now. We just mix it up in the formula and pump it through. We may have to get a different kind of pump to handle the thicker foods, so that’s another $1000 looming out there. We are working with insurance to see if they can supply us with that other model, but not a lot of luck yet. Thankfully, our current model that was causing us such issues has been working much better lately. That’s a blessing to my sanity.