We are living the hospital life again, and I thought now might be as good a time as any to let you in on some of the details of just how exactly we manage to survive while here.
Caffeine, lots and lots of it, coupled with some Excedrin Migraine. I'm only sort of kidding about the lots and lots part, but the Excedrin Migraine is no joke.
Some of you might find this to be informative, for others maybe not. For me, I know that one day I am going to look back at this time in our life and wonder just how exactly we did it. I blog mostly for me (just so you know), but if by chance I manage to educate, amuse, or inspire you with what I write...well, then, that's even better.
To survive in any environment, especially the hospital, for me a healthy mindset is a must! Whenever we walk through these doors I know that we are in need of the experience and expertise of those who frequent the halls here. I have a tremendous respect for the care, concern, love and support that we receive from our medical team. Without them we would not be able to live the life we do live! I also know that when we walk through these doors we are at the mercy of their schedules, procedures, and protocols... this can be the most frustrating thing of all. This means that I have to surrender control, perhaps the most difficult of all human traits to relinquish; control of our time, control of how and when I prefer things to be done, and some but not all control over Lucy's medical care. I could never give up all control of her care, nor do I think the staff here would every want me to give up all control of Lucy's medical care. Have you met our girl...she's complex! I have to keep in mind why we are here and what our needs are, it helps to channel the chaos that surrounds. You'll wear yourself out if you don't have a healthy perspective and a grateful attitude, especially when in the hospital.
Plan for the worst and hope for the best. I realize that may sound awful, but that healthy mindset I just described, this motto helps me to keep that in check. If I'm being completely honest here, I have set myself up for disappointment and heartache so many times by ignoring the worst and only planning on the best. When you have a child with a progressive degenerative disease, lets face it, difficult situations are inevitable, be prepared but NEVER loose hope.
We've had our fair share of bad news and unexpected complications. I've learned along the way that if you react to every-single-little-thing it will suck the energy and emotion right out of you. Keep things in perspective! This life, our life, it's a medical marathon, you need to pace yourself!
The love and support of those around you...invaluable! It takes a village and we are so very blessed for all of the people in ours! Trust in others, be grateful for their love, support, and efforts. Be gracious and thank God that you never have to do "this" alone.
Speaking of alone, having a special needs child, one who is also medically fragile, it's extremely isolating, lonely. It's difficult to find others who can relate to what you are experiencing, but they are out there, especially in the hospital. We have met some of the most amazing families while in the hospital. As humans we are born to be relational. My advice, seek others and develop friendships with those who can relate to what you are living. But beware, don't compare, no two situations are identical. Respect the differences, and the challenges. There is a bond, a kinship among special needs families like no other. They just get it.
Educate yourself, it's a great big world this medical world. Knowledge is power! I believe that the worst part of this medical journey, of any journey really, is fear of the unknown. Once you know you can begin to gain an understanding, then formulate a plan to move on from there. The more you know about your child's medical issues the better you will be able to take care of and advocate for your child. Medical jargon can sound scary, keep that in mind. Reading a medical report reminds me of reading one of Sophie's Fancy Nancy books - medical jargon is just a fancy way of describing medical issues. Doctors understand medical jargon, it helps to speak-a-their language. Our main doc is like a walking Encyclopedia Britannica when it comes to describing medical anything. He likes to challenge my medical knowledge often, I think he's afraid that I might know more than him one day:).
One overnight stay in the hospital might cost more than a night at the Ritz Carlton, but don't count on the amenities being better. I always have a bag packed with the essentials to survive a night or two. For me that means the basic bathroom supplies, a change of clothes or two, pajamas and a sports bra for sleeping. Ladies, do us all a favor and pack a sports bra, please! I like to pack an insulated cup for hot beverages which happen to be free for families staying at our hospital, the larger the better because it's difficult to leave your sick child for refills. I also pack a bath towel from home, if I remember. One of our towels is the equivalent of four
Sleep is a precious commodity in our world! My best advice, take it when you can get it, but truthfully I don't always follow my own advice. I am a terrible napper, I just can't seem to shut my brain off in the middle of the day. Very often I'll stay up late and watch a movie on Netflix, or talk to my husband on the phone until the wee hours of the morn. Sometimes we do both together :). The Internet is not as busy at night, and as such there are fewer streaming delays. Oh and Netflix, how did we ever live without? Drew and I don't see each other very much when we are in the hospital, when we do we're never alone. We miss each other, so this is our time to connect, a kind of long distance "pillow talk". I crave peace and quite in my life, who doesn't, but even more so when we're in the hospital. There is rarely a time when you're living here that you are ever alone. If you shower before 6am you have a pretty good chance of not being interrupted, but even then I have had to answer questions while washing my hair....that's just our life. My mind needs time to escape and to process, for me I find the best time for this to happen is when I should be sleeping.
While we're on the subject of sleep, getting a child to sleep and stay asleep is tricky business. Now try it in the hospital, go ahead, I dare you :). Something we started doing for Lucy when she was a wee little baby was to play music when she sleeps (actually, we did this for all of our kiddos). We play the same soothing lullaby music for Lucy all-day-long no matter where we are, it provides her a sense of familiarity, comfort, and relaxation. As an added bonus it provides anyone who enters Lucy's room a feeling of comfort and relaxation and that's saying a lot in a hospital environment.
Believe it or not, our weekdays fly by while we are here. Weekends, not so much. Hospital time is different - slower yet faster, longer but shorter. I appreciate that someone writes the date on the whiteboard in Lucy's room everyday, you can seriously loose track of time while living inside these walls. There is constant activity and visits from doctors, nurses, therapists, and friends (if we are so lucky) on any given day which means that we don't have a lot of quiet time. My thoughts and attention are all over the place when we are here, my mind is constantly divided with worry and concern for Lucy and the rest of our little family. When we are here we really do need to be here and am so grateful for here! Because of that, you will rarely hear me complain about the sacrifices. But it is hard, long distance parenting is hard, a long distance marriage even harder. We strive to keep our kids daily life as routine as possible, because in the midst of all of this they are living their childhood and are growing up. Having a routine and after-school-activities helps them, which makes all of the crazy scheduling that we do worth it!!! I manage our family life from the palm of my hand, sounds impressive doesn't it, but...ahh...with my phone;). It's ridiculous how much I rely on that thing! We live about forty minutes from the hospital. Despite the distance, we make an effort to have dinner as a family as often as possible when we we are here, and on Fridays it's pizza and movie night. The kids bring their jammies and get ready for bed here so that when they get home they can just crawl under the covers and go to sleep. This routine helps us stay connected as a family, it works for us. We try and make every effort to include the kids in Lucy's hospital life, it's important to us and them. Our hospital supports us in this, they are truly a family centered care facility.
So there you have it, a little insight, OK maybe more than a little, into our crazy extraordinary life.
Thanks as always for your love and support, thoughts and prayers. We could never do this alone, and are so grateful that we don't have to!