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Archive for August 2011

Oliver down.

Wednesday, August 31, 2011

Well, on the fourth day of school, I had to take Oliver out today and tomorrow due to sickness.

Oliver seems to have an upper respiratory infection. It may be something he picked up from school. I'm hoping Bennett doesn't get it.

We may be already experiencing the affects of school.   Oliver hasn't been this sick since he was an infant (which isn't that sick at all, just fever and a cough).
  
Bennett getting sick and staying sick all winter is my biggest fear of school.  But there isn't much we can do.  Kids, even those with CF, do need to experience the normal cold and flu bugs.  But its' not much fun (not for any parent).

We received a call from Bennett's Dietitian at the CF Center Friday.  She said Bennett's vitamin levels are looking good.  So, for now, we will stay at our same dose of AQUADeks vitamins and Di-Vi-Sol.  We are still waiting to hear back on his throat culture results.

I spoke with Bennett's Our Children's House at Baylor Speech Therapist last week.  We have decided to make a change with Bennett's feedings.  We are now doing 1:1 reinforcement, which means for every bite Bennett takes, he gets a reinforcement.  Eventually, we are going to start going to 2:1 reinforcement (two bites=reinforcement), then 3:1 (three bites=reinforcement),  4:1 (four bites=reinforcement), etc.   The goal is to eventually get Bennett weaned off the reinforcements completely.

Bennett is doing fabulous with his eating!  He is drinking so much and taking his food so well!  This change of reinforcement is our way of beginning the wean.  We could still be a year away from fully weaning him.  But we have alot of hope this could go more quickly!  We are also beginning to incorporate new foods in his diet.  We found Cheetos have 5 calories per gram.  This is versus Macaroni and Cheese with has 1 calorie per gram.  So, this baby is about have Cheetos on his daily menu!  We need to fatten this boy up some more!

C.Diff. is under control.  Feedings are going well.  Bennett is healthy.  We can't ask for much better than that!! 

"Taste and see that the Lord is good."  Psalm 34:8

New Medicines

Sunday, August 28, 2011

Just when I thought I finally had Bennett's medicines figured out, we add some more! At our CF Appointment last week, we were given three new prescriptions for medicines to further keep Bennett healthy.

Bennett has now added the medication Azithromycin to the list of daily meds.  Azithromycin is an antibiotic but is used in CFers as an anti-inflammatory.  The goal is for Bennett to be on a low dose of this medication for the rest of his life to keep down his lungs' natural response to inflame when fighting infection.  The way CF works (in a very very broad sense) is the lungs get an infection.  The infection finds a way to stay (due to the mucus, which is a breeding ground).  The lungs continue to fight this infection.  The fighting causes damage that cannot be repaired.  The lungs wear out too quickly because they spend so much time over-healing.  The hope is this medicine will, at least at some small level, keep the lungs from trying heal itself and thereby preventing long term damage to the lungs.

Bennett also came home with the medicines Xopenex (very similar to Albuterol but, we hope, without the hyper effect Albuterol has on kids) and Pulmozyme (or Donase).  Both of these medicines are given through the nebulizer and can be done during Bennett's Vest treatment.  Both meds help with lung hygiene.  Keeping Bennett's healthy lungs healthy is more than half the battle with Cystic Fibrosis these days.

The Azithromycin is new.  But the other two, Xopenex and Pulmozyme, were recommended to me for Bennett when we met with the CF Team at Children's a while ago.  The doctor recommended I consider using these medications but gave me the choice to do so.  We had just come back from the Feeding Clinic and I was well overwhelmed.  So, I suggested that we take a month or so to organize but reconsider these medications during our next appointment. 

This was a good decision.  By the time last week's appointment came around, we were finally ready.  Tonight was our first night to start the Xopenex (we are still waiting for the Pulmonzyme to arrive from our pharmacy).  I was nervous about having to force Bennett to wear the mask.  We force him to do so much already.  I dreaded having to fight him to keep the mask on.

But he didn't even seem bothered by it.  He did beautifully.  Even Oliver wanted a part of the action (I found an old mask and tubing for him; we must replace the nebulizer twice per year so this stuff would have been thrown away anyway).


I am so proud of Bennett tonight, holding his own nebulizer and being so compliant.  He may have liked how the Xopenex made him feel.  It's supposed to make him breathe easier.  Speaking of that, Oliver asked tonight why we needed to give Bennett a mask.  I reminded him again about how Bennett's lungs don't work right and how he give him medicine to help him.  Oliver knows about Cystic Fibrosis and how lungs help us breathe.  But he doesn't quite understand how it all comes together, just yet. 

Bennett is becoming hugely more independent, even as he is not yet 2.  He needs us less and less when it comes to entertaining him for his Vest.  He can push his own medicine through his g-tube.  And will soon be able to hook himself up to his feeding bag by himself!  We still have a long way to go before he can really do any real part of taking care of himself.  But Bennett loves to learn and be helpful so it won't be long...which is good, because I'm exhausted and ready for back up! :)

Bennett's CF Appointment

Saturday, August 27, 2011

Yesterday's Quarterly CF Appointment went really well! This was our first big appointment at Children's Medical Center in Dallas and our new CF Team.  We were very impressed with their care and very happy we made the change.


Our appointment included alot of waiting.  But it turned out to be well worth it.  Bennett found ways to entertain himself to kill the time.


I had forgotten Bennett's lovie (Douglas) until we were well on the way towards Dallas.  So, I decided to buy him a new stuffed animal when we made it to the hospital for his visit.  I'm so glad I did.  "Tiptop", Bennett's giraffe turned out to be exactly what both he and I needed.


 
Bennett loves stuffed animals!

Bennett had a very hard time with requests for him to lie still for an x-ray.  So, I asked to borrow Tiptop and let him get an x-ray.


It worked beautifully!  Bennett is at a perfect age for this type of modeling.  As long as he saw his giraffe do it, he did it.


Bennett is given a chest x-ray once per year to monitor his lungs and any infections. 



It turns out, Bennett's chest xray looked great! 


Bennett had labs drawn during this visit, which is always no fun.  The CF doctors always request ALOT of blood for this blood work.  Bennett was beyond not happy because of it.  However, this is a picture of his pulse oximeter.  A "pulse ox" tells how much oxygen Bennett has in his blood.  This is a sign of how his lungs are doing.  We received a great reading of 99%!


Bennett's appointment consists of meeting with the entire team while we are there: the doctor, the social worker, Child Life, the child psychologist, the respiratory therapist, the dietician and the GI doctor.  Bennett found himself a nice little seat on the step at the end of the exam table.


This isn't that great of a picture but it does show one of my favorite things about this room, the ability to show parents the computer screen.  I love that the doctor instantly has access to the computer and to Bennett's chart online.  The TV screen allows me to also view his records.  This allows for more collaborative work between the patient and doctor.  I love it!


Bennett had lots of cars to entertain him at the appointment.  And of course, his paci.  (Bennett is almost two, so we are slowly trying to get rid of the pacifier.  But doctors appointments, treatments and bedtime are the times we still let him have it.)


My sweet boy.

Our appointment ended up lasting 4 hours on Thursday, four hours with no breaks for lunch.  I've gotten wise about these appointments and brought things to do.  I love that Bennett is old enough to watch movies now.  The DVD player is the most wonderful invention for situations like this!  But at 2pm, I was getting so hungry I couldn't think.  So, I asked if we could meet with some of the noncrucial team next time so we could head to lunch.


Thankfully, my sister Brooklyn lives nearby and came to be with us during the appointment.  I don't know what I would do without her.  She was a great resource to me as she calmed my fears during Bennett's bloodwork (a painful process) and she helped me entertain Bennett so I could talk with his doctors. 

I'm so glad we made the move to Children's.  Not only am I happy with our care there, I am happier that Aunt Brooklyn can come help us more often.  It's pretty nice to have a doctors appointment and a family reunion on the same day!  Bennett loves Brooklyn and so do I!  We are thankful for family, for our CF team and for good health!  (Now we wait a week to hear back on bloodwork and his throat culture to see if there are any changes to Bennett's care.)

Parenting Fail

Thursday, August 25, 2011

{Edit:  David's pathology report came back today with some good news!  Read more here: hurstfamilyupdate.blogspot.com.  Here is a beautiful slideshow of pictures (http://www.facebook.com/pages/Embrace-Photography-by-Brittney-Hejl/211803242168092) by my friend Brittney who took these pictures for Dana and her family for free, a way to help them cherish their life as it is now.  The pictures are awesome and the video Brittney made with them are moving.:::}

I'm so tired tonight.  Now that I'm on Oliver's new school schedule, I'm finding myself wanting to go to sleep at 10pm.  And between Oliver finally falling asleep at 9pm (his bedtime is 8pm) and my getting tired at 10pm, I'm left with only an hour to do everything I need to do to prepare for the next day.

So, I didn't have time to upload the pictures I took today of Bennett at his first full-fledged CF Check Up at Children's Medical Center in Dallas.  Our appointment went wonderfully.  We came home with three new prescriptions (oh boy!).  But Bennett was given a bill of good health overall!

I had a parenting fail today.  After our almost 4 hour CF doctor appointment this afternoon, I received a call from our babysitter asking where I had placed our extra carseat.  The babysitter had come to the house to pick up the seat so she could use it to pick Oliver up from school (since Brian was at school and I was out of town). 

It turns out, the extra carseat was in the back of our car, along with both of the boys regular carseats.  And our car was in Dallas with me.  Yep, I ended up taking three carseats with me Dallas and only one child.  I frantically called friends who might have been able to loan our babysitter their carseat.  After several calls, I found a friend who graciously offered to help. 

Thankfully, Oliver's school just sent him along to their after school program, which made him feel like he had simply had an extended school day.  Eventually, he was picked up from school, just shy of an hour late.  I was so sick about it.  What a silly thing for me to do!  But Brian encouraged me not to beat myself up about it as it's only the first week of school, we are still getting used to our schedule and figuring out all of the logistics.  Nonetheless, I'm so glad Oliver is in PreK and has no idea his Momma left him at school for an hour!

On that note, I said a prayer of thanks when I left Oliver at school today.  I am so glad we made the decision to put him in to school.  I'm sad in some ways, mostly because I would have preferred to keep him at home for as long as possible.  But I am so happy in other ways, mainly that he attends school while I am attending to Bennett.  I was so glad to know that today, he would be having fun and completely unaware that his little brother was being carted off to the doctor to have xrays, throat cultures and bloodwork completed.  It made my heart happy to know that Oliver was well cared for today, while I made sure Bennett was also well cared for. 

Three year old Pre-School wasn't in my "perfect parenting" plan at the beginning of my parenting journey.  But it's turned out to be exactly what we needed.  Thanks be to God!

Oliver's First Day of School

Tuesday, August 23, 2011

The morning started early.  Six thirty in the morning came quick!  Oliver woke up, his first observation wrapped in an excuse not to get out of bed: "But the sun's not up!"  

Brian and I were careful to tiptoe around the house in order to get ourselves (and Oliver) ready this morning.  Thankfully, Bennett was able to sleep right through our new morning routine until it was time to walk out the door.

To start the day off right, Oliver had his favorite breakfast (chocolate donuts) waiting for him after he put on his clothes, including socks and closed toe shoes (a deviation from the sandals he has worn all summer!).  After breakfast, which included watching 10 minutes of a tornado DVD, the three of us  went outside for our first annual "First Day of School" pictures!

Mom and Dad are so proud of their big boy!!

The only way I could get Oliver to stand still for a picture was to bribe him with a tootsie roll and tell him to stand perfectly still like he has to do in Karate.  It makes for a stiff picture but at least a good one!

Oliver was SO excited about school!


And what's inside a Pre-Schooler's backpack you ask?  An extra change of clothes (just in case potty break doesn't come fast enough), a Lunchable (a busy mom's lunchbox) and water bottle (because Texas recesses can be hot!). 



It wasn't until I saw Oliver with his backpack on that I realized how little he is.  When you're oldest is three, it's hard to forget how very little three really is. 


Those little baby legs hanging out of the uniform are so funny to me!  (By the way, I got the ok today at preschool to leave Oliver's shirt untucked in the future.  I was following the school handbook rules but apparently they bend them for the littlest kids.  This is good since I thought the polo tucked into the elastic waisted pants were a bit on the nerdy side, even if he's a cute little nerd.  :) Turns out the elastic waist is to help the preschoolers get their pants on and off during potty time.  But, since we can, we'll probably keep the shirt untucked in the future...until it really matters, in Kindergarten.)  

Oliver had a great day at school today.  I was anxious all day to hear all about it!  This morning on the way to school, I made Oliver promise to tell me three things he learned at school today.  I was delighted when he proudly told me his "3 things" were: 1.) He liked naptime (which he said he didn't take a nap but talked quietly with his teachers).  2.) He liked lunchtime.  3.) He liked playing with cars at school.  Sounds like a good day, indeed!   

Update

Sunday, August 21, 2011

I received a call from our GI doctor's office yesterday morning.  It is always surprising to get a call from the nurse on a Saturday.  Turns out that the doctor wants to get a copy of the pathology report from Bennett's CDiff test results so he can determine the type of CDiff bacteria it is.  Depending on the type, Bennett will be placed on medicine for a month or more.  Last time, he was placed on it for 4 months.  But this time, it may be less.

Ultimately, we don't want Bennett to become resistant to the medication used to help treat his CDiff.  Flagl (the first line of defense) doesn't seem to affect Bennett's CDiff.  Vancomycin (the second and last line of defense) is working.  But there are some who have CDiff become Vancomycin-resistant, which is a scary thing.  (It's extremely uncommon but it's possible.)

Thankfully, we are not there and we have a wonderful GI doctor who is willing to go above and beyond to help us sort out this recurrence issue.  But I do have a pit in the bottom of my stomach.  Fears like, "what if we can't really get rid of it?" and "what if we became resistant to the Vanco?"  These are things I cannot control.  And, like CF, we must just take one day at a time.

Here's an interesting article I found in the news today: http://www.msnbc.msn.com/id/44219901/ns/health/

So, there is only one other child who lives in the Waco area that I know.  (There are a few who live outside of the area but only one who lives inside Waco.)  Turns out, we are just about to send Oliver to the same school this child attended until recently (and whose little brother currently attends).  Ironic!  My heart skipped a beat when I read this family's name on Oliver's school website.  I immediately wrote this child's father to let him know and to find out if he was concerned.  Thankfully, since the only children attending the school will be both of our non-CF children, we feel ok.  But it does make it a bit harder for both families to feel as safe as we could be should we not be dealing with this issue.

I am thankful for the boy's father being so sweet and welcoming to us into this community.  It's hard to think another person is somehow a threat to your own child's health.  But both of our families have vowed to stay in constant communication and will do whatever we can to keep both children healthy.  Thankfully, neither of our children have contracted any serious lung bacteria that would concern us.  And, if necessary, I don't mind switching schools if that would help the both of us breathe easier.  Many families go to schools with several CF children (although they are rarely in the same class) and, of course, many families have more than one CF children in the family.  But, my bigger concern is the encroaching on another family's safety with regard to CF.  It's weird to have to even think about these things.  But I am keenly aware that we are going to have to begin doing so as Bennett gets older.

It's back.

Friday, August 19, 2011

{:::EDIT::: David's tumor has been removed, all 99%.  He is up walking and talking within 24 hours of brain surgery.  Pathology report will be back on Monday.  Praying for good news!!!  http://hurstfamilyupdate.blogspot.com}

C.Diff. is back.  Yucky.  It's painful and yucky.  And it is back again.  Thankfully Brian and I are on it like white on rice.  I'm particularly good at recognizing the symptoms at this point.  I was calling asking for meds from our GI doc before the results were in.  I just couldn't fathom Bennett having to go through the weekend without some relief.  Thankfully, this afternoon at 2pm, with some persistence from me, the nurse called with results.  Within minutes, we had medicine in the works (the medicine must be picked up from a special compound pharmacy) which was picked up just as the pharmacy doors were closing.  Whew!

We aren't too worried.  The Vancomycin should take care of it.  But it is frustrating to see it return.  This is likely just going to be what we must face from time to time.  We pray the C.Diff. never becomes resistant to the Vanco.  

We are so thankful for medicine that gives Bennett relief and will allow him to eat again without vomiting.  While annoying, C.Diff. is able to be controlled, which is wonderful.   We will continue to strive for that!

The Return of C.Diff? And off to Houston...

Wednesday, August 17, 2011

C. Diff. might be back again. ::Sigh:: We had a good run with no issues but I'm afraid Bennett may never really be able to get rid of this infection for good. Nonetheless, once we get back the final test results, Bennett will be put on antibiotics for a while and should be cleared within a few days.

I leave at 5AM this morning to drive 3 hours to MD Anderson in Houston to be with Dana during her husband's brain surgery.  It will be an open brain surgery and they hope to remove as much of the tumor as possible.  This evening, our prayer is that David's surgery will go well and Dana will not be in fear.

I pray that I can be present with Dana during the surgery, to keep her mind off of the things she cannot control and to help her process her thoughts through it.  I also hope to just be with her, without the need to talk or have the "right" words.  I remember our friend Josh and Lindsay were amazing when they came to keep us company during Bennett's reanastomosis.  There were times when I wanted to laugh and other times I wanted to sit silently.  I appreciated the way they gave me the space to do both.

It's always scary to have surgery on the brain, particularly when the tumor is near such an important part of the brain (the corpus collosum).  So, we will all breathe a sigh of relief when we hear David's tumor was removed and he is doing well.  Thank you to all who have prayed with me.  The family will continue to update how he is doing here: hurstfamilyupdate.blogspot.com

On a side note, here are a few Cystic Fibrosis links I wanted to share...
I.want.this.  For CF Mommas like me, this is sooo cool?: http://www.bbc.co.uk/news/uk-england-derbyshire-14544319

A story about Josh, a guy with CF who makes puppet videos for kids with CF.  My little boys are still a little young to understand what is going on but they enjoy watching them anyway...and I know they will be wonderful for teaching about CF as Bennett gets older: http://www.myfoxtwincities.com/dpp/health/maplewood-puppeteer-cheers-children-with-cystic-fibrosis-aug-15-2011


Prepare For School Week

Tuesday, August 16, 2011

This is our dress rehearsal.  Regular weekly appointments set.  Schedules made.  Clothes picked out the day before.  The alarm set for early in the morning.  And bedtimes have been moved earlier than normal.  This is our "test" week before school starts...

...school for Brian and school for Oliver.

Brian is the main one we're concerned about.  This summer spoiled us.  Brian was incredibly flexible all summer to help when needed.  But once school begins, he will become extremely busy and unable to help us very much.  In addition to his normal course work, he will be teaching a freshman religion class this fall and studying for Prelims.

Oliver's school starts this week too.  It will be his first time to preschool.  We are very excited for him.  I think he will do wonderfully.  He is at the age where he wants to be stimulated constantly and loves to learn.  He is great playing on his own.  But the amount of time Bennett requires throughout the day often leave Oliver bored and left with little stimulating to do.  Bennett's care (feedings and treatments) keep us at home.  But Oliver, almost 4, needs to be out doing things, exploring his world.

So, I have been intentional both about getting Oliver out more, while also looking for ways others can do this for me, such as through school or through Oliver's buddy.

Bennett will begin to have his own routine once school begins, as well.  I will be home more to play with him and give him more attention.  Brian recently said a very true statement: Bennett gets all of our time but none of our attention.  This is because Oliver requires so much attention and Bennett requires so much time.

I'm excited to begin to see things balance out better.  Bennett needs more attention.  And Oliver needs more attention outside of Mom and Dad.  So, we are hopeful this - Oliver going to school - is a good decision (despite that it may put Bennett at risk for more lung infections this winter).  Both boys are becoming more independent so this is likely a great change for them both.

Here are a few pictures from this past week:

Last week, Mumsy and Pops (my parents) were in town for a few days.  Mumsy and I took the boys to Sam's in order to get them out of the house.  As a treat, I promised Oliver an Icee.  Of course, Bennett wanted some too so I split it for them.  Bennett is doing wonderfully with a straw these days!


A treat for being so good!


Notice Oliver won't put his Icee down, even for a picture.  Bennett takes a few minutes break to revel in his high seat at the table.  He climbed up there on his own.  He is quite adept these days.


Still drinking...

Look at me, Mom!  I'm a big boy!


Two out of three smiles ain't bad.  This is every bit Bennett.  He has a fabulous sense of humor -- keeps Oliver in stitches - and loves to smile.  He rarely cries and overall has a very easy going demeanor.


Smiling with Mumsy at Sam's Club.


This week, during a no-children outing with my mom and sister, I complained of my purse being too heavy.  I started pulling out items that I didn't need and handing them to my sister, Brooklyn.  I felt a bit like Mary Poppins pulling out car after car after car.


I've been carrying around the normal wallet, cellphone, last 5 receipts, lipgloss, small container of enzymes and mini bottle of hand sanitizer....as well as two pacifiers and 7 toy cars .  I think "being prepared" may have gone too far!

Here's to the calm before the storm,

Oliver's Buddy

Sunday, August 14, 2011

:::EDIT:  If you'd like to read more about Dana's and her husband's journey, you can find their blog at http://hurstfamilyupdate.blogspot.com.  The family just recently made the blog public due to an overwhelming response of people wanting to keep them in their prayers.  The family's greatest need right now is for prayer, specifically that David will get insurance approval for Thursday's scheduled surgery at MD Anderson.  At this point, it has been denied despite MD Anderson's recommendation that the awake craniotomy take place immediately.  To read more, click here..:::

A few weeks ago, I put out a request among those in my church to find a sweet college student who would be willing to be Oliver's "buddy."  Having identified how much time Bennett's care takes during the week and realizing through Play Therapy that Oliver needed more one-on-one attention from a loving adult, I sought to find someone to love on Oliver.

I needed someone who would put Oliver first - just like Brian and I do - but only Oliver first.  Bennett is the one who gets all of the attention, it seems.  He's the youngest, the baby, "the sick one" and a darn cute kid at that.  It's easy to fall in love with him.  The nurses at his clinics love him.  He has numerous therapists who we meet with weekly to work with him who love him.

But little Oliver, I realized, several months ago, does not get this type of attention.  He's just a normal kid...a normal kid with a sick brother who catches everybody's eye.

So, I decided I needed to be more intentional with him.  We have been in Play Therapy since January, which has been AMAZING!!  And we put him in a Mom's Day Out program this summer, which was fantastic.  Then, we enrolled him a physical activity to give him an opportunity to burn off activity.  But what still lacked was someone who could love on him as much as Mom and Dad...someone whom he wouldn't compete against Bennett with for attention.



I feel so blessed to have received the name of a sweet college student in our church, named Amanda, who enthusiastically stepped up to be Oliver's buddy.  She's an education student at Baylor who happily picks up Oliver at our house every week and takes Oliver fun places, just him and her.  They've been to the movies, to visit a Firehouse and to the Waterpark, just to name a few.  She is so phenomenal.  She loves him and he loves her.


I am touched by Amanda's thoughtfulness and willingness to care for my child for nothing in return.  Not only does she spend time with him, but she thinks about his needs first.  (For example, during our recent trip to Missouri, she gave him a box of wrapped fruit snacks and toy cars for him to open on his trip.  He LOVED it!)  She also gives me a break.  I always know he is having the time of his life with her, all while I have a chance to spend a little special non-treatment, non-therapy time with Bennett (or even time to myself)!



One of the highlights after Oliver's time with "Miss Amanda" is to pick up McDonalds and bring it back to his room where they sit on the floor and have a picnic. Oliver doesn't really know why Amanda comes to play with him, but he does know that she really cares for him.  Her love teaches him that he is safe and loved.



Amanda teaches me about sacrifice.  Weekly, she sacrifices her time to be with my little guy, in order that I can shield him from the disease that sucks up so much of our family's energy and resources.  Thank you, Amanda, for what you do for Oliver and for our entire family!!  You mean so much to us!!

The Face of Friendship

Friday, August 12, 2011

On Thursday, I was able to get away for a fun girls lunch. It was so nice to put on a nicer-than-normal outfit and an extra piece of jewelry. Girls' time is so fun and not something I often have a chance to do. 

But this girls' time was particularly special because it was a small gathering of some of Dana's closest local friends. We gathered together yesterday for lunch out as a way to check in with our friend during her time of grief. It was my first time to see her since I heard the news that her husband has a brain tumor. My heart had been unable to rest until I was able to hug her, look her in her eyes and ask, "how are you really doing?"

It turns out Dana is doing really well, considering. She is sad at times but many more times, she seems to be holding on to hope, focusing on what is positive in her life and believing God is in control. The thing that strikes me the most is how she is holding so tight to Christ during this time. It is obvious by her character and faith during such a stressful time that she believes the things she professes to believe.

After our time together, which was a mix of laughter and tears, Dana, her friends and I held hands and prayed. I started the prayer and before I could even think, the words, "I'm so sad" rolled off my tongue. (When I approach God, I often want to be honest about how I am feeling. And in this moment, I was overcome by my grief over Dana's most recent news.  Our time together was meant to be a space for healing among friends for Dana but it ended up being a space for healing for me just as much.)

It was Dana's prayer, however, that most affected me. At one point, she said, "God, thank you for my friends, who I believe you put in my life to show me the different parts of you."

I love this and have thought about this concept numerous times since this prayer. I've considered how God has many different faces. And I have, many times, been aware of how God reveals himself through others. But I've never really thought about how the different friendships I have can demonstrate the different parts/faces of God.

Experiencing Dana's journey with her husband's health reminds me alot of my own journey through Bennett's illness. Seeing her friends rally around her reminds me of how Brian and I have felt watching our friends rally around us.

Friendships (and familyships :)) are critical in times like this, when one's life is in an uproar and the future seems undetermined. I am so thankful for the many friends God has placed in my life.

And Dana's prayer reminds me that God's placement of friends in my life are not just functional but spiritual - a mirror or shadow of who God is in my life.

 I so appreciate being invited to girl time Thursday. But even more, I appreciate seeing the face of God through Dana...not just through Dana's prayer but through having her as a friend.

Grieving with those who grieve.

Tuesday, August 9, 2011

My stomach has been in knots for days.

I received a phone call last Thursday, one of three I've ever received, where I knew life had changed forever.

The first call I ever received like this was from my friend Cynthia when she told me her first child, still in the womb, had stopped moving...later calling back to let me know the doctors had confirmed the baby was stillborn.

The second call I received like this was for my son: "I'm so sorry to tell you...but Bennett's Cystic Fibrosis test came back positive."

The third call I received like this was just days ago when I found out the husband of a dear friend of mine has been diagnosed with having a tumor on his brain.

Each time, my heart stopped beating as the reality of what I was hearing over the phone sunk in.  Each time, I couldn't fully comprehend what I was hearing, but I knew that once I hung up the phone, I was about to enter grief.  I have entered grief for myself.  But entering grief with friends is so much more painful.  It's so much more painful to see a friend hurt.

Our friends have been in a race against time to get treatment since finding out this devastating news late last week.  The brain tumor is large and needs to be taken care of immediately.  Our friend, Dana, who has been a huge help to me in our time of need, has two little children (ages 1 and 3) whom she is having to care for while navigating what the future holds.  My heart has been so broken for her since I learned of this news. 

Over the last year, my friend Dana and her husband have many many times helped me with the kids, particularly through her offering to watch Oliver when I needed a break.  Oliver and Dana's little girl are the same age and play wonderfully together.  Through my times of need, Dana has been persistent to get me to allow her to help me.  Not wanting to be a burden and inconvenience her, I have many times said to Dana, "how could I ever repay you??"  This week Dana reminded me of the many times I have said this to her...and then, she replied, "Little did we know."  It turns out that Dana is now the one in need. 

For the last two years, Brian and I have felt the outpouring of love and support from friends, family and strangers.  We have, so many times, felt helpless and overwhelmed by God's care for us through his people.

Now, I am getting an opportunity to be this support and love to someone else.  And, because I have experienced it firsthand, I find incredible joy in it. 

My friend and her family face an upcoming battle.  We all hope surgery will be this week but we don't yet know what the future holds.  Brian and I are in constant prayer for this family.  For the two young children who have no idea what is happening around them.  For the husband and father who is facing the fight of his life.  And for my friend, a wife and mother who faces grief while choosing to be trust God.

I am watching Dana, face what is likely the biggest challenge of her life with incredible strength and calm.  She is a firm believer who is grasping the cloak of God and I am honored to be on this journey with her.

Please pray for Dana and her family.


Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.  2 Corinthians 1:3-4