proactive

Sometimes, as a mom of children with various medical conditions, I feel like most of life is beyond my control.  Much of life revolves around doctors and therapy appointments.  I browse catalogs looking for adaptive equipment like "platform scissors" instead of platform shoes.  I book flights... for doctor's appointments instead of exotic locations.  I think of the holiday season in terms of who has what appointment when and where.  My calendar is completely dominated by doctor's appointments.  In fact, there is not a single personal appointment for myself in the next 2 months on my calendar yet my calendar is full.  My contacts list on my phone has more medical related names and numbers in it than it does friends.  I can easily navigate multiple children's hospitals.  I plan what I am wearing daily based on what is appropriate for doctors' appointments and that I can also nurse in in front of doctors or therapists.

I love my life but it looks nothing like what I expected.

When I am emotionally and mentally preparing for my child's surgery, I begin to really feel like things are out of control.  I become anxious.  I start to forget things as I just think about what it takes to get through "the day."  I grasp at whatever I can that makes me feel like I am proactive.  I just want to be able to do something... when really there is nothing I can do to make the situation easier.

I take DHA supplements.  I've always done this in my pregnancies and while nursing but I am very diligent about both taking the DHA & eating extra fish in the days leading up to a surgery.  It is supposed to make the recovery time go quicker.

I spend a lot of time skin to skin with my babies.  This is called "koala care" and was created by God for bonding between mommies and babies.  I love when science recognizes what God has designed for our good.  Not only does koala care lessen depression in mothers, it can actually help to stabilize baby's vital signs.  Before and after a surgery, it is recommended that the baby spend some time nursing and doing koala care on Mommy to help with their vitals.  I also love to bathe with my babies.  It's just sweet time to spend together in the water, skin to skin.  This has been hard for me with Ellie since I don't get to bathe her too much and we are on such a strict schedule as to when I can bathe her.

I nurse.  I think a part of my commitment to nursing is that it offers me something "normal" in the midst of so much that is far from the norm.  It gives me something typical to talk about with friends.  It just feels like a normal mommy thing to do - unlike the rest of my life.  I also recoginize, however, the huge benefits in nursing - espeically for a baby who undergoes what Ellie must endure.  It is an opportunity for me to offer her comfort.  I can't take away her pain.  But I can comfort her in this unique way for now.

I love cuddling and rocking too.  When Will woke up today, he looked at his watch (my old watch that he loves to wear) and announced, "First it's cuddle time for 8 minutes.  Then, it's breakfast time."  Three years old and he still loves a good cuddle.  Ellie seems to be a snuggler too.  We've had some lovely early morning naps together - when I just can't muster the energy to get up and get moving but Will is not up yet.  

With both kids, I've enjoyed rocking them so much.  I can't count the number of tears I've shed as I've rocked a baby in the quiet, dark night.  Thankfully, I know Who does count all our tears and save each of them (psalm 58.)  I've got shelves and shelves of saved tears.

I read recently on the blog Sixyearmed, "Sometimes we rock babies to sleep.  Sometimes we rock to quiet them.   And sometimes we rock a baby to soothe ourselves."  I try to not cry in front of Will anymore when something has bothered me like an appointment or a mean comment.  But, when he's asleep and I can just cuddle him, I have shed lots of tears.  Rocking both him and Ellie as babies, I have shed tears as I've worried about them, prayed for them, thanked God for them, mourned  the change in plans, and struggled with them for their challenges.  It soothes me.  It comforts me.  Sometimes, I just need that gentle motion and a warm, precious babe in my arms as I release my emotions.  And they seem to love it too.  

I have recently slept with some of Ellie's little blankees so that they will smell like me and she can snuggle up to them for comfort.  I wanted to be able to send something physical and tangible with her into her little surgery to comfort her.  (Of course, I have no idea if in a sterile environment it can be near her face but I'm hoping.)  It makes me feel proactive.

I love researching the unique ways God created mommies and babies for each other.  I love finding simple, natural ways I can take care of Ellie - sometimes it feels like taking a little red DHA pill and nursing her are the only ways I am able to care for her right now.

I know the One who is in control.  I know the One who created each of my babes so uniquely.  I know He loves them more than I can fathom. I know He is in control.  But, He made this mama and as a mommy, sometimes I just need to rest and cry and sometimes, I need to do.  I need to do something to believe I am making a difficult situation for my child better somehow.

Today, I am taking both kids (still so surreal to write that) to a different children's hospital - Dallas Children's.  We've all been there before - Will for 3 surgeries and Ellie when she was so sick in September.  We're getting some second and third opinions about a possible surgery for Will & a treatment for Ellie.  I'm sure it will be another grueling day.  

I decided to explain to Will about the appointment.  The doctor is a new doctor for us and will be examining Will's hands.  I didn't want Will surprised by this or caught off guard by our conversation regarding the possible surgery.  Will is too aware of conversations and I felt it would make him nervous or confused.  So, I explained what R & I are considering briefly and why the doctor would be looking at him.  I also assured him he would not have his ears checked.  R won't be with me tomorrow which adds another element of stress as I take in all that the doctor says.  (Thankfully, my mom will be there to help manage children while I ask questions and take notes.)  

Then, we have Ellie's first neck therapy appointment.

And, then, I will be gearing up for Ellie's first surgery - a very minor surgery but still...

sweet baby.

Just another day in the life.

(Don't forget to link up or make a comment in the giveaway post below!  It ends on the 25th!)