As you will see we are in a hospital phase. That makes my days different, my to do list longer, and my energy just generally reduced. This time is particularly hard as I am away from Danny during the week - so my worry sets in a zaps all that extra energy right up. Overall it has been good and here is my post from this weekend, reflecting on last week:
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Today’s blog programming comes to you from Baltimore, Maryland - Johns Hopkins Hospital to be exact…..we are back…..
As you may have guessed from Monday’s weekend wrap up and my lack of blogging this is where you would find us…hospital bound. As the week started Dan was in pretty bad shape and we were fairly certain this was how it was going to end up. Although the week threw us a few curve balls before landing here.
Monday was as expected - Danny felt a bit better, but for the most part was resting. I was back at work and excited to start the true “real life” of 2015 after the holidays. Dan had an early morning doc appointment Tuesday not far from my office - so I decided I would go with him and then head to work after.
Well Tuesday morning we woke up to a very unexpected Winter Wonderland. They had called for less than an inch….but we ended up with about 4 inches and all between the hours of 6AM-9AM. The county had not prepared - roads were not pre-treated, plows were few and far between, and the commuting was in full force in the DC area.
We had planned to caravan to the doc so afterward Danny could go home and I could head to work. We got to the end of the street and decided that was a terrible idea…..crashing into each other would not be very smart. Plus by this time my office had decided to open late. So we drove over together.
Now **DURING** the ride, I was a nervous nelly. Grabbing the door handle, pressed back against my seat, eyes perhaps a little closed…… and Dan had some choice words too ….BUT all of that aside, the doc we were going to see was in the more remote part of Loudon county and it was gorgeous. Most of the “main roads” - which are still pretty remote, two lanes and winding, - had little accidents, or blockages - so my hubby throws the Explorer in high four wheel drive and we took even more remote back roads. Moving slow, no other cars, and just the beauty of the snow around us…. we both paused - how unexpected this morning had become and the incredible scene that surrounded us - it was actually pretty breath-taking (well for those of us with extra breaths….).
Getting to the doc we sighed some relief for not being too late and treking through the snow. Then suddenly it hit us how good Danny felt. He had slept a full night and getting up this AM facing the snow - instead of wiping him out (I was pretty sure we were going to pay for his clearing the car and fighting the weather from the driver seat) - he felt energetic. The appointment went great and the Doc thought his lungs sounded pretty good. This appoinment was with a specialist, not a CF expert, but she does follow Danny pretty closely and usually can tell good day from a bad….so we were feeling hopeful with what we were seeing. Maybe, just maybe he had beaten this cold!
Suddenly on a morning we had pictured completely different, we were presented with a winter wonderland, Danny feeling good, and a few hours spent together that were never planned. It was like a little gift, a little break built in the middle of a week that was becoming a little hairy. I silently wondered if this special day was because it was Saint Andre Bessette’s feast day.
From Wikipedia
Although Danny is now in Hopkins with very low scores in his lung health, he is feeling better. It is funny our families and friends have started to recall St. Andre Bessette Day and I believe although everything has not gone the way we **want** everyones' spirits - Danny, mine, our local support - has been really strong, really positive and the general feeling that we are lucky to have access to such good health care - instead of frustration and sadness. I think it is everyone praying to "our" Saint!!
Tuesday got pretty crazy before it got better….after a few hours I headed into work. Not a bad day to go in when the morning was already over! That night driving home I felt a tug on the steering wheel and heard a thumping….you guessed it- flat tire! Dan met me to wait for the tow truck and another unexpected night - but what you gonna do??
Wednesday AM I stayed home in the morning waiting for the final tire fixes before heading into work and Danny was heading to stay with his parents so he could be that much closer to Baltimore for his Thursday appointment. I got into work late, but the day was still pretty good until my sister called….Quinlan got out! UGGGG I raced home in the car while she chased him through the neighborhood. Its not that we think he won’t come home….it is more that he is so little and something will happen before he makes his way back home. Or he may find his way to another dog and want to “play’ (play for Quinlan is actually attack and bite…he is cute and little but we have harmed other pups in the past with our anxious nervous habits). When I was finally within 5 minutes of home, Quinlan ran back in the house to get some water. He finally had wore himself out. **SIGH** - all is well that ends well, but it scared me.
Thursday rolled in and Dan had his appointment at Hopkins. He was facing traffic, fears of what the docs would say, navigating the hospital on his own - a stressful day. On the other hand I was having a variety of meetings, talking about new exciting work projects to come and generally thrilled with what the day presented. To me this can be one of the hardest things about marriage - sometimes your days, even your worlds, could not be more different if they tried. But I am proud of both of us (learning this lesson the hard way in other moments), for recognizing this and thinking of the other person first. I tried to be focused on Danny and being there for him - not all excited about my work and my great day. Danny was the same - trying to express that all the waiting and tests were no big deal and asking about my meetings. It has taken time, hard work, prayer and an insane amount of love - but we have become a good team to balance these opposite days.
Dan’s tests came back with exceptionally low scores and bought him a one way ticket to the hospital. We are still facing the issues of his veins being weaekend by so many IVs so blood clots are a reality and we can’t follow his normal course of IV meds. These scores are some of the lowest Danny has seen - so we wondered if this cold has done permeant damage. This all basically means - we are prepared for a long stay, being nothing but positive, and realizing that we are lucky with our support systems, good docs, and opportunities for good care. This sounds so basic - but we have to remember this is not the case for everyone - we are blessed.
We both laughed on Thursday - 2015 was going to be our year. We had high hopes, plans for moving (soon), hopes for some big new changes, and are trying to do it all. Danny and I had an exceptionally difficult 2014, especially being completely shocked by a tragic and untimely passing of a family friend. It is a terrible situation and we pray for her family often - but we also were touched in such a powerful way. Life - in all forms - is such a gift....at least we get a chance to keep trying everyday and to love on those special in our life. That is not a gift everyone is given and we are no longer taking it for granted. We are going to live all of our moments the best we can - no matter where they take place.
These thoughts have been at the for front of my mind all week. Sure - this has messed with our plans, but getting down, giving up, making excuses to give up on our plans - all this will do is destroy the life we do have by throwing it all away over this one rough patch. So when I say have it all - what I really mean is, Danny and I started some things in 2014 that are only going to grow and enhance if we stick with them. Dan has health and hockey and some projects rolling - I have several roles for my career aspirtions, my health, my blog ….and these are the things that can get lost or forgotten during the rough patches and if you aren’t careful you never return to them. We are not present 100% with them all, but we are not shoving the thoughts to the back of minds to be revisited at the “perfect” time. No such thing - the time, its now.
In the past I can’t say we were lazy or just gave up. I can’t say it is not like we did not care or weren’t prepared. In fact in some ways we thought we were making the right choices - when we had money concerns we gave everything up and focused on fixing that - when Dan got really sick we cut out all extras and just focused on him. We have a strong marriage, Danny is pretty healthy, and our bank account is happier - but we have all these goals that we forgot about, we have a constant feeling of having to restart or needing to wait for the perfect moments to take the next steps. That is no longer an option for us.
This year we are wanting a life that keeps going, we want a home, we want a family, we want careers, health and hobbies -we want things that require our attention, planning, nurturing to make happen. And we have to realize our life is going to have rocky points, that we have to learn to keep dragging our life through it - we can’t stop everything at once and hope it will all be there in the future. Not being with Danny every moment at the hospital hurts to my core. When Danny has to skip out of hockey, cancel our dates, or can’t be there to help me fix a household thing - he is angry. This is not easy - but this is our life and we have to learn to live, not despite it, but with it.
2015 has started with a bang! A bang a little different than the one we had imagined, but we are still here and it is only the 11th - so we are not giving up!!
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I was so proud of myself for getting a post done in the hospital, but the final step of posting never happened. Well I buried my angry speak tonight about “never going to get it done” and just DID IT! Thanks for sticking with us - and good news, Dan has a potential to do IV meds at home - starting tomorrow!!! Stay tuned!
