Saturday, July 24, 2010


Just for the record..I updated the blog Thursday night (ok. Really, it was Friday morning since it was after midnight...) and then Friday morning wrote an apology...

The apology I was written purely out of guilt on my part. No one was offended or offensive. I was the only one telling me to "Suck it up, Buttercup." It was truly one of those moments when you think, "I really shouldn't have said this but now it's in everyone's inbox and now what do I do?"

Thursday night, I had just finished manipulating numbers, trying to find some way to afford a school that I truly believe would be ideal for my younger children next year, when I wrote the update. I had been told that the school would be willing to provide some scholarship assistance, but I still had to find funds to pay the balance of tuition. And it just is impossible. There is no way to help Will medically and pay tuition. I was exhausted both physically and emotionally. I can't help any of my kids at this point. It's totally in the Lord's hands because there is no way mine can make any of this work. But I was so sad. I so want my kids to have stability and a decent education provided by people who truly love the Lord and care for my kids.

So I wrote the update.

Friday morning, I thought, "Oh, I cannot believe I did that." Why do I just put everything out there for the world to see? They don't want to know that we can't afford tuition and still pay our medical bills and travel expenses to Ohio and the mortgage. They don't want to nor need to know the minute details of our life or of my grief over our current situation. Really. Put on that Sunday face and "Suck it up, Buttercup!" So I wrote the "I am so sorry for being way too blunt" post.

And then I received emails. People are truly concerned that I was being criticized for the post or that I was irritated by suggestions I received in an attempt to help me find a solution. None of that is true. It truly was my own sense of guilt at having burdened anyone with my current level of pain...Truly.

So do I apologize for the apology post? :) Or do I simply say, "Thank you for caring enough to pray and for wanting to help find solutions to the impossible dilemna." I think I'll stick with the thank you and quit apologizing for least for the moment. :)

Drama Drama Drama

I am obviously emotionally fatigued. I realize that most of you are saying, "Well, duh!" but it isn't that easy. I get up in the morning, handle whatever the day holds, and eventually go to bed. I don't really dwell on what is happening here until I either update the blog or someone asks a specific question and I have to evaluate. So, I sent out a heartfelt update, woke up the next morning, berated myself for the honesty of it, and then had a day.

Wednesday evening I took the kids to the gym for the first time in months, so they got to bed at ten which is hours after their bedtime. Thursday, I had some of their friends here so they got to bed late again. Friday dawned, and it was ever so painful of a day. :) They bickered, fought, argued, whined, and were in general, dramatically irritable. Will was attached to his lifeline. I was trying to pay bills and find the wood that I call my desk which is always buried when I return from Cincinnati. So I was in my office, talking to Chelsea on the phone when Camden comes running into the office screaming...and holding his hand. I, in my not so gentle way, tell him to quit screaming and tell me what happened...and then I realize he is holding his hand kinda funny...and it's red. Oh! Ok. I take a look at it and bark orders. Paper towels. A clean towel in case the paper towels become saturated. Keys. Bag. Water. Walk out the door. Not. Oops. Will has to be detached from his lifeline. Put everything down, find the syringe of heparine, sterile gloves, sterile caps for his line, detach him, now I can go. Call Erlene as soon as I get in the car. Call Chris to tell him that the Crisis Management Team (meaning Erlene who devotes her life to our family and its crisis)is on its way. :) Call Billy. Oh, call Chelsea who is panicking, I know, because I simply said, "Oh, gotta go." and never explained that Will was still walking and talking and Cam was just dripping blood all over the floor.

Well, it wasn't until we were in a room and Camden was about to get stitched that I even noticed that I was totally not stressed (ha!) but Camden was at the end of his rope. The drama of our lives has gotten so crazy, that even blood and stitches seem routine to me. The poor kid was totally at whit's end and I was treating him like this was no big deal. Well to my OCD kid, the world was about to stop turning...and I wasn't helping him at all.

That is about the point that I just wanted to lose it. I am so not helping my children here. How do I help them healthily process all that is happening in our lives when I simply treat everything like it's all normal? It IS all normal, doggone it. And it shouldn't be. Part of me wants to scream and say, "Could this please end now????" and the other part of me (We aren't discussing whether I am hearing voices!) thinks, "This is what the Lord has for today, so deal with today." But today is hard.

Tuesday afternoon, I got into the airplane, buckled up, and then promptly burst into tears. No explainable reason. I realize that all of the drama that occurs so regularly here is just exhausting. If it's exhausting for me, an adult with some level of skill at managing all of this, how incredibly exhausting it has to be for the kids. Kids are adaptable, yes. But the instability here is leaving wounds that only Christ can heal. And as a mom, I don't want there to be wounds that need healing.

So, Camden received five stitches in his finger and was admonished to use the right tool for the job, and Erlene graciously stayed with the kids a little longer so I could take Camden to get some ice cream. He is recovering nicely and hopefully won't scar too heavily...from his cut or from my insensitivity.

Friday, July 23, 2010

What Was I Thinking?

There should be a sign on my monitor that pops up at the stroke of midnight that says, "Do NOT update the blog!" I'm not a night person, so not only are the updates poorly written after midnight, but they reflect the anguish that appears when I'm exhausted.

So last night, the sign didn't appear and I poured out my anguish on my blog and am now totally regretting that. I mean, really, when will I ever learn that sharing all of my lovely deep fears that are founded in anything but faith do NOT need to be heard by everyone who, for some bizarre reason, signed up to actually receive this blog in their inbox?

So, that being said, I am still in anguish, but the sun is shining (a little too warmly, thank you!) and I do realize that my children's education is firmly within God's very capable domain and the fact that they are struggling in their hearts is also very much within His very capable domain. And the fact that I am incapable of figuring this out is really least for a few more days. :)

So, I do apologize for being a little too blunt...and I will ask the engineer in the family to create a sign on my monitor that will automatically pop up every night at midnight that says, "Do not push 'send' until after 7 AM!"

School Decisions

We arrived home from our epic adventure in June and, the next day, I left for the home schooling convention in Richmond. The goal was to find a solution to our impossible school situation. While we had help a couple of days a week this past year, the kids still lack the consistency of school that is so needed for progression. When you spend your whole life reviewing, you don't move forward.

Well, there really was no good solution available for the little guys. But how do you home school when you aren't home and aren't able to take them with you? So I looked at video, but for kids already suffering from isolation, that is a horrid solution. Looked at private schools...which we cannot possibly afford. So, here I am faced with the dilemna of do I put them in public school (which makes me shudder...we live in a district with horrid schools) or do I continue to muddle along which I believe at this point is unfair to them. They need more than what I can give them right now - academically, emotionally, and physically.

Today I talked to a local Christian Montessori School. I toured the school, talked with the owner, and was actually pleasantly surprised at the philosophy of this school and with the heart of the owner toward the kids. So maybe we have a solution! And then we talked finances. And that door is now shut. Even though he is willing to provide some level of scholarship, the amount of scholarship that we would need is outlandish. There is no way this is going to work.

So what do we do? I honestly have no clue. I am at a total and complete loss as to how to move forward for all of them, except Will. His is the only curriculum with which I have any peace or confidence.

As we face Will's impending surgery, the need for decisions regarding school next year, and daily life with a son whose health has further deteriorated, I'm just exhausted and have no idea how to move forward...

Monday, July 19, 2010

I Just Wanna Go Home

We saw Dr. Crone this morning. When we explained what happened on the last trip home, he asked a few questions then stated, "So we need to get moving on this next surgery." Yep. He believes that the team can be coordinated in about three weeks. Dr. Crone then told us that we needed to return to Dr. Crawford's office.

Apparently Dr. Crawford had shown Will's most recent xray to a colleague, and they agreed that Will's neck was tilted too far forward. So, Dr. Crone sent us back to Dr. Crawford's office where Will was fitted with a new brace...a much bigger brace that actually tilts his head back and holds it much more snugly.

While Greg from The Brace Shop was fitting Will's brace, Will was just fighting big tears. He refused to shed them, but mine certainly fell. It was just heartbreaking to see him recognize that he would be further limited in his mobility. This brace doesn't hide beneath his clothes like the other did, so he is much more self conscious. And worse, he is physically uncomfortable with the position in which the new brace keeps him.

Will still recognizes the sovereignty of God, but he is extremely discouraged, uncomfortable, and sincerely not looking forward to the pain of surgery. At this point, Will just wants to go home.

Saturday, July 17, 2010

Another ER...

We couldn't escape it. We are sitting in the ER at Children's Hospital in Cincinnati. I let Will sleep late this morning since his IV finished so late last night. Well, that was probably a mistake. He woke up really late, grabbed a shower, and then we left for the aquarium where we were meeting Becky and Brian. We grabbed food on the way. It was obviously too late...he should have eaten much sooner.

He was looking pretty rough but said he was ok. Well, he wasn't. Thirty minutes into the aquarium, he says, "Can we go? I just need to lay down." The translation of that is, "I am in a metabolic crisis and I need D10 1/2 Normal Saline by IV." Which translates to, "Would you please drive me to the hospital so they can give me fluids til I feel better?"

So here we are in the ER. Becky and Brian were able to enjoy the aquarium without us, but she dropped by later with Chipotle for us. Yay! Real food! Chipotle is one of the few fast food restaurants that is safe for Will, provided he avoids the corn and milk products.

I have no idea if we will end up here overnight. I hope not, but I am not discounting the possibility. I really just hope that he is able to respond to the one bag of D10 so that he can get a really good night's sleep. Either way, we are grateful for friends, a good hospital, and real food.

Emotional Rollercoaster

We had a bizarre day yesterday. We met friends for lunch which was so nice, saw the orthopedic which was a difficult appointment, dropped by Guest Services which ended up being very cool, then headed back to the hotel for an IV which did not make Will happy.

So, yesterday, we met Becky and Brian G at Fountain Square for lunch. It was an interesting trip in that Helga, the GPS, had no idea where Fountain Square was, and my blackberry was moving like molasses on a cold winter's day. I had to return to the hotel. I typed the correct address from the desk clerk in to Helga, and she wanted us to go right instead of left. Um, no. I don't think so. The desk clerk said left. After telling us she was recalculating about ten times, she said, in an exasperated voice, "Please make a legal u-turn as soon as possible." Good night, Helga. :)

So we met Brian and Becky and had lunch at a cool little diner that Carl's grandfather used to take him to. It reminds me of Goolricks back home...only bigger and with no pharmacy. :) Even the colors were similar. We enjoyed our conversation and then headed to the observation tower. Becky grew up in Cincinnati, so she pointed out some of the buildings and explained their history and then talked about the church tour she took a few years ago. She told me about Findley Market, which I would love to visit some Saturday when Will doesn't need to sleep for fourteen hours. :)

We headed to the hospital (Helga was reinstated!) for our appointment with Dr. Crawford. Dr. Crawford is a tall, older gentleman with a stately bearing. He is so pleasant. His favorite statement is, "I put the metal in, but God fuses the bone." Yesterday, we didn't hear that...we did hear, "There is progress. We will see you again in six weeks." When he asked if I had any questions, he listened to my concerns, and I feel like he understood for the first time the urgency of the situation. He then stated that we could do the next surgery as long as we keep him in the collar after that surgery. He will chat with Dr. Crone on Monday. I don't know that Dr. Crone will agree, but Dr. Crawford finally does grasp that we aren't just treading water here. The storm is getting rough and Will is deteriorating.

We left that appointment. Will was a bit of a mess because he was still stuck with the collar. I headed to Guest Services to make plans on what to do for the weekend...The lady who runs that desk is amazing. She remembered us from our previous trips and asked Will how he was doing. He basically grunted a response. She handled it fabulously and realized that Will was needing some encouragement without my having to say a word. She clapped her hands and said, "I have the perfect thing for you!" and dashed into the back of the office. She came back with this huge grin and said, "You are a Reds fan! We just got these!" She then handed us two tickets to club seats at Sunday's game (air conditioning and catered food) and a parking pass. No way. We had looked for tickets to a game, but they were a little expensive and it was way too hot. This is like Christmas in July. Woohoo!

Those little tickets were so encouraging to Will. He was physically not doing well and emotionally just done, but the tickets gave him such a boost. We got into the car and he said, "I need fluids." which I already knew but was trying to figure out how to not make his day any worse by telling him he was going to have to have an IV that evening. So we headed to pick up new pads for his brace (which of course insurance won't cover) and then back to the hotel for food and an IV.

So this afternoon we are heading to the aquarium with Becky and Brian for a few hours. Tomorrow we will attend their church and then see a baseball game. Monday is the doctor's appointment, and we were given tickets to the Reds Hall of Fame. Sunday is the biggest energy expenditure, so hopefully Will will tolerate it well.

We really have been so blessed with friends who care, people and businesses who help make time in the city a bit more manageable for those visiting for medical care, and friends and family back home who are helping to keep things moving forward.

Thursday, July 15, 2010

Looks Like We Made It...

The pilots today were pleasant. The plane was the largest we have been in to date, so Will and I sat in seats facing one another. We didn't have headsets this time, so we just sat quietly and read and eventually played hangman together on my blackberry. It was just lovely to sit and nothing else. That just never happens in my life.

We arrived in Cincinnati in record time. When we arrived in the terminal, though, we discovered that the one detail I did not call and re-confirm is the one I should have. They had no record of my car reservation. Fortunately, they were extremely pleasant, and after several phone calls, were able to locate a different car with a different company who was willing to bring me said car. They were truly pleasant and willing to do whatever they could to help.

In the process of all of this, I discovered that I do not like the Toyota Corolla but I love the GPS system. Oh yeah. Find what I need on my blackberry, type in the address, and, voile', it tells me how to get there. And if I happen to misunderstand the lovely Helga, then she automatically recalculates without my having to tell her to do so...and she doesn't call me an idiot. :) As for the car, I am grateful to have one, but the Corolla was not designed for someone of my stature-challenged personage. :) I mean, really, when you can barely see over the dash, the car needs a little rework. It is a little outrageous when I can back a 15 passenger van into almost any parking space but parking this little itty bitty red car makes me hold my breath. Could we please have a power seat next time? :) I am not really asking for much...I am more suggesting that not everyone is six feet tall!!! :)

We checked in, unpacked, ironed all of our clothes, grabbed some dinner, and found Walmart (I love Helga!) to purchase Will's daily quart of Powerade for the next five days and water for both of us. Will is showing signs of wear from the trip, so we headed straight back to the hotel for a quiet evening. We will meet friends for lunch tomorrow and we have a doctor's appointment at 3. It is a fairly quiet day, so hopefully we won't suffer any ill effects from today. We also have lots of fluids, but hopefully we won't be needing them until Sunday...

Heading for sleep...

Wednesday, July 14, 2010

Round 2...or is it 42?

Will and I head back to Cincinnati tomorrow...which by the time you read this, means today. Our Angel Flight pilot will be picking us up at the Stafford Regional Airport and flying us directly to Cincinnati. To my knowledge, there is still a pilot needed for the second leg of the return trip, but hopefully that won't be an issue. We've learned how to cope with epic adventures, so I guess we will cross that bridge when Tuesday arrives if Cathy isn't able to locate a second pilot.

We test drove Will's new pump and backpack this evening. He was thrilled with his mobility and the fact that Ruth, the cake eating puppy, wasn't tripping over his tubing. Will could actually go upstairs and get his clothes packed while attached to his lifeline. Very cool indeed! The pump itself is more noisy than the old one, but noise vs mobility...mobility wins. :) He isn't exactly wanting to test drive the freedom out in public, but the fact that he can go anywhere he wants while infusing is amazing.

I am totally brain dead. I am sitting here staring at this white screen thinking, "Um, that is a blank screen." :) I wanna say, "Man, I'm really concerned about this trip and what will happen both enroute as well as what the doctors will say." But to say I am worried seems wrong because I am not. I just am concerned for the situation and for how Will will handle whatever news comes his way. He is significantly weaker on one side than the other at this point, he wants out of this brace (which would really be amazing for the rest of the summer...think beach!), and there is still the Make A Wish Foundation trip that cannot be scheduled until he comes out of the brace. He has had to contend with so much this year that I just don't know how to help him process the news if it isn't positive or if he has significant issues during the trip...

So I am going to tuck my tired brain into bed and pray for sweet rest. Tomorrow begins the next step in what has been such a long process....

Saturday, July 10, 2010

That isn't what I expected....

This week, I talked with Will about our impending trip to Cincinnati...the trip of which we do not speak. No one wants a repeat of the previous trip, so we've kinda gone along like ostriches pretending that it doesn't exist. Somehow the whole ostrich thing only works for a little while...

So, in chatting with Will, he kinda looks at me, squints his eyes, and says, "Do we have to drive? Can we please fly?" Yes, we can fly, if they can find a pilot willing to fly us. (I realize that for most of you, you wonder why we don't request the Angel Flight every time, but the issue is cost. While the flight is free, we still have to rent a car in Cincinnati and that car rental is generally more expensive than the gas to drive there...It all boils down to budget. At the end of the month, the mortgage company really does prefer to receive the payment due.)

So off I went to request an Angel Flight. Cathy very graciously agreed to search for a pilot for us, and I made reservations for the rental car.

When I arrived home from Costco this afternoon, there on the table was the Angel Flight information. Cathy was able to schedule a pilot to get us to Cincinnati...Woohoo! So I opened the letter to see whom the pilot was, and it's someone we've never met, and we're flying into Burke Lakefront. Um, well, NOW what do I do. I have a rental car reserved at Lunken Airport, but apparently we're flying into...Cleveland. Well, that isn't what I expected. :) We were kinda trying to avoid the whole "Road Trip" thing in general, but now there's a four hour drive that will have to follow the flight. Hmmm...

So, I've left an email and a voice message for Cathy, and we're back in a holding pattern. Do we fly? Do we drive? Do we fly and drive? :) Stay tuned...