I’m home and adjusting. After two hospital stays adding up to 40 days out of the last 46, I’m experiencing some major culture shock. It’s weird being able to do what I want when I want. And ironically, I’m even struggling to adjust to sleeping through the night without a vitals check every 2 hours. Nevertheless, I’m happy to be home.
It hasn’t been easy between 16-20 hour sleep days and multiple syncopal episodes each day due to worsening dysautonomia, but I’m learning to adjust to my new “normal.” We know it will take time, but I can’t say I haven’t been frustrated.
Our “new normal” also includes a huge increase in scheduled routines. For instance, our new TPN routine for a single infusion:
- 2pm-4pm: Remove TPN bag from refrigerator to allow time for it to reach room temperature
- 8pm: Follow sterile procedure to prepare bag for over-night infusion; hang bag on IV pole (with my tube feeds)
- 12pm (following day): Follow sterile procedure to remove bag and flush both lines (I have a double lumen so I can receive other medications and fluids simultaneously)
- Rinse, wash, repeat.
This routine requires us to be tied to a refrigerator, or a TPN-containing backpack for all but 2-4 hours each day. I’m sure we’ll get used to it eventually, but while it’s still new, it’s incredibly stressful.
These new experiences, however, have shown us just how strong we are, both as individuals and as a couple. I’m not sure many men would be able to handle the increased stress that Keith has. And he does it with such ease, without batting an eye. He carries my incredibly heavy backpacks containing the TPN and tube feeds as naturally as holding my hand. He peels me off the floor following a syncopal episode as easily as picking up a dropped glove. He schedules – and reschedules – his days around my numerous medical appointments. Each day I’m reminded just how incredibly blessed I truly am.
Still Miles to Go 
Chelsea
I have told you before – you are stronger than ANYTHING that will EVER happen to you.
That being said, that doesn’t mean that you aren’t going to struggle, be frustrated, get angry, and even crumble at times….we ALL do. The key is to remember that you are only human – and that what you are facing is really a HUGE change….so BE GENTLE with yourself. I can’t even begin to imagine the range of emotions that have gone through your precious heart throughout this ordeal, but yet you still carry on with such dignity and grace even in your darkest moments. This, my dear friend – is not only a sign of great strength – but incredible spirit. Remember this when it’s hard to press on….remember this when it feels too dark to find your way….remember this when you feel like you’re drowning in frustration……
It is always darkest before the dawn….but it is only in the darkness that we can recognize and cherish the light.
As for Keith, what can I say that I haven’t already said about him. He is a diamond in the rough. I DO believe that God placed him in your life to fit you perfectly. He knew what your needs would be (and his) and He put the two of you together like perfectly constructed puzzle pieces. He is a wonderful husband, friend, and ‘Uncle’ – and I have no doubt that no matter how challenging things get, the two of you will grow stronger, love deeper, and live harder than you ever dreamed possible.
As for the ‘adjustment’
While I cannot say I really ‘understand’ what you are going through, I can say that we too have been through ‘shell shock’ of learning to live with a ‘new normal’ in our lives when Will was diagnosed with the immune deficiency…and then Sasha. We were told ‘No playgrounds, no playgroups, no play dates, no daycares, no crowded places’ and it was earth shattering to think that we really had to alter life THAT much….but we did – and we had amazing parents who helped us be creative and find ways around the limitations. We had a personal giant playground installed in the back yard, we converted the pool to salt water (as it was healthier for them) and we learned to adapt our schedules so that we could get our shopping done, run our errands, and still have fun and LIVE. It was also tough to again find our ‘new normal’ when having to consider (and finally agree to) weekly infusions for Sasha….and even harder when the supplies finally arrived at our house and we had to learn a new way of life – we had to learn how to prepare and administer these life saving infusions to our 17 month old daughter who didn’t understand why we were hurting her (though we were truly trying to help her) – and, each week was SO tough going through all the techniques of preparing, setting up, and administering the infusions for Sasha….but we eventually got used to it…..AND, when we had to adjust to the reality that we had to accept another ‘New Normal’ when Will had to begin the infusions as well, it felt like we were going to crumble…..I mean, how in the world could we handle doing infusions on TWO kiddos? BUT, we did…..and, while it was another difficult adjustment, it was also one that we handled (not well at times, but we tried). As you see us now, you know that we not only have adjusted to that new normal (and all the other ‘new normals’ that came after that), but they have become SO normal that it’s as routine as making dinner….and while our infusions weren’t daily – the other restrictions coupled with that made our ‘new normal’ a daily endeavor. I am not telling you this to toot our horns, but to show you an example in which the impossible, the difficult, and the change were overcome and new hope and new life was born from it.
While I know it’s not the same in SO many ways, the essence of it is quite similar.
I say all of this to encourage you during the times of frustration….during times in which you might feel like you may never adjust or that life will not be able to be lived as freely as you wish….
We felt the same way for many other various reasons….but I want to encourage you through this….as I truly believe, “Where there’s a will, there’s a way” and, of all the people I know….you have the strongest and most vibrant will of all….so I just KNOW deep down inside that, despite the new found challenges in your life, you will not only overcome them, you will SHINE through them (and we will be right there with you every step of the way).
I know I could have just said all of this to you my dear, but I wanted to put it in writing, so that on days that you find particularly difficult, you can come back to this and remember that you ARE strong, that you ARE amazing, that you ARE resourceful…that you HAVE support, that you HAVE help, that you HAVE unconditional love…
Remember to BE GENTLE with yourself….you are only human and it is ABSOLUTELY normal to struggle with the new things that have been placed on your plate….
But know this….no matter what you have going on, you will always have the love of your amazing husband, your family (your real family), and your adopted family. We will always be here for you and we will carry you through the times in which you cannot go on your own.
With all my love, respect, and admiration….Stef
You both are incredibly inspirational. I do think Keith was the biggest gift God could of given you. You both continue to amaze me! With all my love! Aunt Karen