Friday, November 22, 2013


There are a lot of phrases I hear a lot but one of the most common I get it something along the lines of how do you do it, or I wouldn't be able to do it or don't know how you do it.  Sometimes I know it's just something people say to try and show that they do get how big of a deal it is and to show empathy.  I actually really like it when people say that- I way prefer it to some other things I hear a lot.  Because what we have been through is huge and difficult and I really do appreciate it when people understand that it is hard to balance and manage and that none of my decisions have been easy.  Most of the time I just reply with well, you just have to do what you have to do.  Or something of the like.  But I thought given it's been a particularly crazy couple of weeks, it would be a good time to give my advice or tips on how I survive times like this- partly to help anyone reading who is going through a hard time but also partly just to reassure everyone that I am hanging in there and to give you a little glimpse into how I do get through these times!


1. Trust:  Trust God first and foremost.  And then trust the doctors.  As a parent it is so hard to accept that you cannot fix everything and that there are limitations on what you can do for your child.  And nothing makes you feel more helpless than when your child is hooked up to machines you cannot operate receiving medicines you cannot even pronounce.  You have no choice but to trust the doctors who truly do know more than you do and who want nothing more than for your child to get better.  This does not mean not to ask questions, challenge if need be and always teach them about your child.  It does not even mean they will always make a perfect decision.  But at the end of the day, you just have to trust them.  You'll go crazy otherwise.  And really you can trust them, because it comes back to the first and foremost part- trust God.  Because really He is in control, not the doctors. 

2. Eat Cupcakes. Sometimes calories do not count. So eat lots of cupcakes.  There are times to care about eating healthy and about your body.  When Max and Addie came home from the NICU I knew it was time to get my pre baby body back and I did.  And there have been times I have worked out lots and really prioritized eating carefully.  But when one of them is really sick and in the hospital, yep not the time.  It's the time to eat Bugels and Reece's pieces and anything that makes those days just a little easier.  Cope now, diet later. (says me who does admittedly have pretty rocking metabolism...!)

3. Plan for a future.  Make decisions assuming there is going to be a long happy future.  There is that great Tim McGraw song about 'live like you were dying' and as much fun as sky diving and rocky mountain climbing sounds, you cannot live thinking they may not survive.  My kids were born with the odds stacked against them.  We were told they may not survive and since then we have faced many life or death moments.  But if I lived each day like it was their last, I wouldn't make Addie wear her patch.  I wouldn't waste time calling therapists and insurance companies.  I'd quit my job.  We wouldn't worry about labs or procedures. We would not have wasted time on dialysis and we wouldn't worry about medicines and checking levels. And we wouldn't be building a future worth surviving for.  By all means, take things one day at a time during crises.  And yes enjoy and soak up each and every day.  But live like there will be thousands more.  Plan for those thousands, make hard decisions to make those thousands better.  Don't live like they are dying.  Live with faith they aren't.

4. Laugh It's okay to cry.  It's also okay to laugh.  Lots of people will tell you it's okay to cry.  Honestly when I'm in the middle of a crisis, I don't cry.  I go into this robotic numb mode where i just focus on what next and on the numbers and on trying to make sense of things.  Sometimes it stresses people out and makes them feel the need to tell me it's okay to cry. I know it's okay.  It's also okay not to.  We had this one NICU nurse I loved and on a really bad day when Addie was so sick and intubated and I felt so hopeless she told me this hilarious story about a British phone booth her husband built for her.  And it made me laugh.  And I loved her so much for understanding that it's also ok to laugh.  My  Even when your kids are sick. Sometimes you will laugh and it will make you feel better.  And then you might cry alone in your car the whole drive home.  You have enough to worry about... don't second guess your emotions.  Just feel what you feel.

5. Grow Thick Skin. People do not know what to say.  Don't hold that against them.  I could write a book of some crazy things that people have said to me.  From the comical to the downright offensive, I've heard it almost all.  Recently I presented Max and Addie's story to students at my school and a boy asked if I was planning on getting my kidney back from them?!  People don't know what to say, and they want to say something to show they care.  Sometimes they get it wrong.  Just let it roll off your back.  Appreciate that they tried and smile. You need friends and support.  You cannot afford to be oversensitive.  And worse than the bad comments are the people who say nothing.  Who actually seem to avoid you.  Forgive them.  They are just scared of making it worse.  They are overwhelmed because they haven't walked in your shoes.  They don't mean to be hurtful, they in fact are trying to avoid that.  Always assume the best of others because you are in enough pain without getting hurt by how other people handle your situation.

6. Wear Mascara.  It really makes people think you are okay and relaxes them.  When I forget to wear mascara people seem very concerned about whether I'm sleeping enough or if I've just been crying.  It seems to encourage a lot of worried glances and people avoiding you.  On the other hand, when I dress up and have my make up on, people always look relieved.  And then they feel like they can ask you how you are or make a joke.  They relax, you relax.  I always think of the commerical "Maybe she's born with it, Maybe it's Maybelliene'.  Sometimes it is okay to wear your heart on your sleeve, but sometimes it really helps to Cover Girl up the pain and look brave!

7. Take a lot of pictures.  Savor every good moment and document every bad one.  I take pictures every day.  I have this thing where I have to have a picture of them in every outfit they own.  I think it's pretty standard for moms these days, we all snap away on our phones every expression they make.  Don't take less pictures when they are sick.  Don't let tubes and wires hold you back.  Take tons of pictures.  This is their childhood and it is as worthy of being remembered.  You'll look back and remember the good.  You'll also look back and see how far they have come.  I really wish I had more sick pictures.  They are actually among my favorites now because they remind me every day what we have come through.  I did not want pictures of them looking sick in the NICU, and I hated pictures with the feeding tubes in their noses.  But now I wish I had more of those.  Because pictures of the bad times serve as reminders of all we have survived. Now, I take pictures of everything.  I took pictures of Max on the ambulance stretcher the other night.  I won't post it or even show it to people.  But it is an event in his life.  One more thing he survived and pulled through and I want to remember that.  So, Keep taking pictures!!

8. Be where you need to be.  Don't worry about what other people think about where you should be, follow your own heart. I care a lot about what other people think of me.  And when you have a kid in the hospital, people seem to have a lot of opinions.  And I've had to accept I will never please everyone.  Some people think it's crazy for me to work and that a good mom should be at the hospital.  Some people think I need to be home with Addie and make sure her life is normal as possible.  Some people think I need to try and work because that is how I support my family and ensure their future.  So no matter where I am, someone is going to think I should be somewhere else.  Pray and ask for wisdom on where you should be.  I take it one day at a time making those decisions.  Sometimes I do need to be with my family, for them or for myself.  But other times, I need to continue working and living our normal life because for us anyway, medical crises are part of our lives and I cannot put life completely on hold when they happen.  I hate having to work when they are sick, but sometimes I pray and I know it is where I need to be for my family. And for the 180 teenagers I am responsible for as a teacher.  And once I make a decision on where I should be, I just have to be unapologetically there.  And not worry about where other people think I should be.

9. Keep busy. Find something that keeps your mind busy and helps you release some stress.  I know exercise is a great one and I would love to say that I go to the gym and run my stress off.  But honestly with work and needing to be home with the kids, I do not usually get to exercise when I'm stressed.  Instead I have a very strange vice- I love crafts.  When I am stressed, nothing is quite as calming as my paper cutter and laminator.  The people who work with me know that when I'm happy and doing well, I'll be working peacefully at my desk making worksheets or calmly entering grades.  But if I am going through a hard time and stressed, you will find me chopping colored cardstock and laminating anything I can think of!  It makes me feel productive and like I can accomplish something!  Find something- cooking, cleaning, exercising, knitting... something that makes you feel busy and like you are doing something and not just stressing and panicking!

10. Don't compare.  Problems.  Or Kids.  I saved this one for last because it is probably the hardest but most important thing I try to do.  (You will notice there are a lot of cliches I have not included like 'ask for help', 'eat healthy' or 'join a support group' because even though they are great advice, I just do not do them! So this is not my list of how you should handle things but just my list of how I do handle them!!) Anyway, this last one is so vital when you are living with medically fragile and developmentally delayed kids.  But it's a lot harder than eating cupcakes and laminating!  You have to learn not to compare your kids and your life to anyone else's.  I get on Facebook and I see posts about 2 year olds reciting Hamlet's soliloquy (okay maybe not but you get my drift!) and it's hard not to feel a bit sick to my stomach that Addie isn't talking.  Or I see pictures of 2 year old boys 'being boys' running around rambunctious and my heart hurts again for Max's immobility.  But I have to work really hard not to be jealous.  And to still be excited for my friends kids accomplishments.  My kids have lived a completely different life.  To compare them to other kids their age is pointless.  I need to rejoice in their accomplishments and still feel complete joy that is not dampened by realizing that other kids their age are doing 'more'.  And I need to still be excited for those other kids.  It's a hard thing to do and I do not always manage it as well but most of the time I am able to do that and avoid those comparison feelings.

Along with that, you just cannot compare your problems with other people's problems and stop feeling concern and compassion for others.  Perhaps if there was an objective meter of stress or sadness, my life might beat someone's else and then it would be easy for me to think 'that is your biggest concern?!'  I know how easy those feelings can come but they do nothing but isolate you.  Yes, I carry a heavy load and my life contains stress and pain other people's do not.  But, they still carry their own burdens and they still feel their own stresses and pains.  And while an objective scale could deem them lesser, they are every bit as real to the person experiencing them.  And they still need my kindness, concern and care as much as I need theirs. Problems are problems and sadness is sadness.  Do not get caught up thinking about whose is worse. It is a recipe for self pity and anger and will do nothing but make you less happy and isolate you.  Rejoice with others and support others.  Do not let your crises trump theirs and rob you of your own compassion.  Don't compare, just continue to listen and love and support.  And then they will do that for you as well.  And you will come through this with stronger friendships.

So those are my tips for how I cope in times like these.  It is what works for me but I also know that every person just has to work out for themselves what helps them through.  I am very blessed with amazing parents and great friends who cheer me up, pray for me and shower me with love and concern.  And my faith and the prayers of others lift me up and enable me to get through times like these.  It's not easy but I am okay. I haven't lost my mind yet, or even my sense of humor.  There are days that are especially dark but I certainly have not lost my joy, my hope and my ability to laugh.  I know people worry about Max and I also know people worry about me.  So I just wanted to write and let everyone know that I do have my own quirky coping techniques and I am still me- trying to find something to laugh about, wanting to be honest and share the struggles, and every bit as determined to stay strong and happy for the bravest and most beautiful babies in the world!