Pneumonia Again

Last week was difficult for us, Sophie Kate came down with aspiration pneumonia again.  This is the second time in two months and her doctor wants to hook us up with a pulmonologist (a lung doctor).  Once again this pneumonia came on her fast with a sudden onset of high fever, lots of gunk, retching, lowered oxygen saturation and an overall feeling of rottenness.  Once again though she has responded well to the antibiotics as well as other interventions and is back on the road to recovery.  While it is an absolute miracle that she has not ever had pneumonia up until now and has not had to see a pulmonologist either, I can't help but sigh and feel the pain of it all just the same. What new road are we starting to go down now? What's happening in her already compromised little body?

It's not an emergency situation, quite the opposite really. She has responded well to her current round of antibiotics so it's one of those situations where her doctor just wants to get us in with a pulmonologist so he can "get to know her."  That's the part that makes me sad, see we have long term relationships with all of our doctors and they are wonderful (don't hear what I'm not saying), it's just that I wish we didn't have to get to know them at all, no offense. Our superhero of a Pediatrician is only doing what is best for our little girl, as he always has, by hooking us up with other top notch specialists that he knows we are going to need as we continue on this journey with his girl of ours.  It makes me sad that he thinks we need to see this doctor even though I know we need to as well, I just don't want to.  

That longing for normal and typical pulled at me hard this week.  I felt it when hurtful words were spoken to us in the waiting room and I couldn't stop crying.  I felt it when we got everyone up and ready for church only to have to turn around and take SK and daddy right back home before we even walked through the doors because she wasn't quite ready to get out yet and didn't let us know that until we got to the parking lot.  I felt it when I looked in her sick eyes always knowing that once we get her better there is still a mountain in front of us to climb.  I just felt it and it hurt all over this week.  I certainly don't cry every day anymore, but have cried many days in a row this week.

The little girls her age and younger have made my eyes well up with tears this week.  Do they know what a blessing they hold in their arms?  Do I?

Overcoming

Although the world is full of suffering, it is full also of the overcoming of it -Helen Keller

Goodness is this world ever full of suffering.  I feel so keenly aware of it, tuned in to it, surrounded by it and fixated on it.  Glued to my TV watching real life unfold in Boston and West, Texas, knowing with each new development reported that this is no TV series.  How many times have I seen stuff like this on a TV show?  Not this time, the police in their bullet proof vests, the citizens being held up in their own homes in fear...this is their reality.  The explosion we have now probably all seen in West, Texas that took the lives of so many...such suffering.  

The son of my very dear friend just celebrated his 9th birthday...in heaven.  That precious one suffers no longer. Because of God's faithfulness, I am a witness to this family's suffering turning to joy.  They are overcoming in Jesus' name.  They have not overcome their suffering, but they are overcoming...experiencing days of joy in their lives once again, Amen! 

As is the case for so many, I don't have far to look for suffering either.  I glance over at my daughter sitting outside on a beautiful weekend and although her face never shows it, she has indeed endured more than enough suffering for one lifetime.  Her world is full of suffering, but it only takes one touch or one word to her and a smile breaks out across that face as bright as the sun.  That smile of hers is one of overcoming, not that she has overcome but that in and through Jesus she is able to overcome because He has overcome sin and death.

To overcome is to get the better of.  It is putting feet to the floor when we just want to hide under the covers, it is walking out the front door when we would rather stay home.  It is continuing to walk with God while we cry.  It is choosing not to live a life of bitterness, but instead to touch and feel and experience and breath in every single ordinary regular day.  For it is in those ordinary days that we find we are putting feet to the floor, we are getting out again and we are smiling.  We look back and see the faithfulness of God all along and how He has brought goodness out of the difficult.

John 16:33 "I have told you these things, so that in Me you may have peace.  In this world you will have trouble.  But take heart, I have overcome the world."

Saturday

Saturday could not have been a more perfect day.  We got up early and spent about 95% of it outside.  Jacob and Grey had their first track meet and we were gifted with beautiful weather.  Jacob came in second in the 800 meter and y'all haven't lived until you have seen Grey throw the javelin...that kid is a hysterical.  Grey ran the 100 meter and 200 meter and after finishing holding his side declared he would need to do the 50 meter at the next meet...way to challenge yourself Grey.

Back at home, there was still some time left in our day for Jacob to finish his garden.  He has planted corn, tomatoes, cucumbers, red peppers and onions.  He has wanted to farm for years and his dad has made that a reality for him now.  We're looking forward to Jacob's home grown produce this season.  This garden is just his, neither one of the other brothers are interested in farming.  I love seeing the pride he is taking in his garden.

As our evening was winding down, we all found ourselves out on our back deck.  It was so nice outside that no one wanted to come in and eat so we just took our plates outside.  Sophie Kate was laid out on her cot enjoying her family and the wonderful weather.  The boys were back and forth from the trampoline to the yard to the deck just hanging out.

As the sun went down, the thoughts running through my mind got louder and louder...it's Saturday night, we have church in the morning, we have to get all these kids showered, in pajamas and in the bed, we have to go in.  The problem was no one wanted to go in, not even the parents. We sat there as the sky around us went completely dark...all of us together, talking and listening to music. No one made any effort to go inside, not even the parents.  I was so content in those moments...Sophie Kate was smiling, the boys were sharing and talking, we were all laughing and I knew that everything else could wait.  We won't always have all this time together.  As the boys get older they are going to want to spend more time with their friends than with us.  So the showers could wait, the clean up could wait, the dirty dishes could just sit and the shoes could stay strewn all over the floor...I can't get these moments back with them.  I want them to know how much they mean to me and sometimes that means keeping my seat and tuning in versus busying myself with chores.  

I didn't want the night to end and it didn't until we couldn't stay awake not one minute longer.  We all went to bed with dirty dishes in the sink, shoes still strewn about and messes here and there.  I long for a night like that again soon while they still want to "tell me" and "show me."  To them I'm sure it was just a regular day, we didn't go anywhere spectacular or do anything that fantastic, but it was near perfect to me.  Laughing, listening, sharing and just being together...it doesn't get any better than that for me.  

Impossible to Possible

I remember the day so clearly that Chad and I found out we were going to have a baby girl.  A girl after three boys, the odds were not in our favor, but nevertheless we were going to have a daughter.  On that day our girl was safe, content and healthy...my body had not yet failed her and on that day everything was right in our world.  I dreamed for the months that followed in shades of pink. I dreamed of smocked dresses and big bows, tea parties and baby dolls, dance recitals and cheerleading...all those things about girls that were going to be so new to me, so exciting.

I found the perfect crib bedding in shades of pink, green and yellow.  A new pink diaper bag to carry all her girl stuff around in. I'm sure you're getting the picture that pink exploded in our house pretty quickly.  I got to buy dresses and tiny mary janes and bows. I had her coming home outfit picked out and could just see in my mind's eye how perfect it would all be.

I didn't think hours before she was born that I would be praying on the way to the hospital that she would just be alive.  I didn't think on that Saturday morning at just 35 weeks that she would be taken from me.  I didn't think her entrance into this world would be so quiet, such deafening silence that I know had I been conscious I would not have been able to bear it.

These could not possibly be the circumstances under which my baby girl came into this world.  I didn't think I could hear another doctor tell me that "she could still live or die" or she'll never walk or she'll never talk without my heart breaking into a million pieces.  I didn't think I had what it took to bring her home and take care of her, it seemed such a daunting task we had ahead of us.  Even as a nurse I remember having people repeat the instructions over and over again because I just could not grasp what was required of me in taking care of my own daughter. 

I didn't think she would ever stop crying.  I didn't think my heart and my spirit could take the pain she endured.  I would give anything to trade places with her.  I didn't think going anywhere besides home, or to a hospital or to a doctor's office would ever be an option for us.  

I didn't ever think the sadness could be penetrated here.  I didn't think we would have any reason to smile or truly and wholeheartedly laugh again.  I mean the kind of laughter that takes your breath away, that genuine kind of laughter that just makes you happy...there was nothing to be happy about.  

I think it was so dark here because at that time we were truly under the wing of protection of the Almighty.  He had us hidden in Him.  We needed mending and healing and the kind of mending and healing we needed couldn't come from a doctor, it could only come from our Creator.  The one who knows us so deeply and intimately and loves us so dearly.  God was at work even in the midst of our hurt and He made possible what we thought impossible.

I didn't think joy could return to my heart but it has.  I didn't think we could enjoy life with a special needs child, but we do.  She smiles and she loves and to be around her is to be around someone special.  She is the purest soul I know.  I didn't think a life that was born of such grim, hopeless circumstances could turn into something with such meaning and significance, but God did.  What Satan intend for harm, God turned into good.  No not just good, but abundant and overflowing and spilling over and unable to contain all the good that God has blessed us with in those three rowdy boys and that one quiet little girl.  

Ephesians 3:20-21 "Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be the glory in the church and in Christ Jesus throughout all generations for ever and ever! Amen."         

His Perfect Timing

The life we lead with this girl of ours has lead me to friendships I would have never had otherwise.  Three ladies in particular have children who are now healed and in heaven and although I never knew their babies in this life I have been blessed to get to know them through their mamas.  We have shared stories, tears, struggles and an understanding that comes when you travel a similar road (not that we have felt the pain of losing a child, I am speaking to the common journey we have in our special needs children). Our stories, however, don't end with the tears, hurt and struggles...there is more to our stories.  We are also sisters in Christ who share joy, encouragement, love, prayer and a listening ear that "gets it."

I have several friends here in town and then a group of online friends that I can bounce ideas off of.  We share with each other what's working and what isn't with and our special needs kids.  Again, I would have never known these folks if our kids had not brought us together.  A club you don't want to be a member of, but provides encouragement and understanding nonetheless.

I remember when SK was a baby so many people encouraged me to be in a support group of some kind.  My standard answer was "Nope that's not for me.  I don't want to see what my future is gonna look like."  I still don't know that that was necessarily the way for me to go, but what I do know is that God saw fit to introduce all of these great folks into my life as I could handle it...in His perfect timing just for me.  Y'all do know God's timing for us is always perfect don't you?  Well, it is!

Isaiah 25:1 "O Lord, You are my God; I will exalt You, I will give thanks to Your name; For You have worked wonders, plans formed long ago with perfect faithfulness."

I'm thankful for His perfect timing in my life.  Yes, in the midst of hurt, pain, despair and difficulty His timing is perfect.  Through the questioning, the tears and the sadness His timing is perfect.  And while experiencing joy, laughter and smiles His timing is always perfect. 

Spring Break Wrap Up

Sorry I left y'all hanging with the second Spring Break post, things got crazy once all the kids went back to school.  OK, I left off with our hike down to the bottom of the falls.  It was wonderful, I enjoyed it so much.  There's no rest for the weary when you're camping though and we had no more finished lunch before a group was getting together to go horseback riding.  I have always loved horses and so wanted to do this but didn't know how the boys would feel about it much less what I could arrange for SK.  Once again our friends stepped up to the plate and knocked this one to the fence...wait for it...one of the dads volunteered to stay with SK...and fed her!!  He acted like it was no big deal, but that's a huge deal, believe me.  Men don't normally jump at the chance to keep other people's children.  They're not really big on wiping the noses and mouths of any kids other than their own, at least that has been my experience. Our good friend Scott stayed behind and fed SK and hung out with her at the campsite so that I could take the boys horseback riding. I'm going to have to stop going on and on about it though cause he's not going to want people to know that he has such a soft spot, ha...but he's gotta know what that meant to me!

 We went on a 2 mile trail ride.

 The boys with their horses...

After the hike to the bottom of the falls and then horseback riding, I was totally exhausted.  The kids however jumped on their bikes and were off again as soon as we got back to the campground.  I checked on SK and found her on her cot by the campfire.

Underneath that top blanket is Sophie Kate's heating blanket, it went everywhere she went and kept her warm each evening.  By the way, both of us fit on that cot of hers. Yep, I scooted her over just a bit and got underneath that heating blanket with her and dozed off as the sun went down that Tuesday afternoon.

The next morning we met some of our group for breakfast at the only restaurant around.  I need to set the stage for you though...they take their last customer for breakfast at 9:45... at 9:30 we walked in with a party of 17 which included about six 10-12 year old boys.  You think they were happy to see us?  They were nice about it, but I can only imagine what they were thinking in the kitchen as they had to keep bringing out more and more bacon to replenish that breakfast buffet before those boys got their fill.

Grey had the best one-liner of the trip after breakfast that morning.  Now, remember as far as he was concerned we were camping.  We were cooking our own food, sitting by the campfire, doing all those things associated with "camping."  After breakfast that morning he declared somewhat disgusted, "We're no longer camping, we're just living."  I cracked up.  By his standards eating at that restaurant had taken us out of camping and we were just back to regular living, too funny.

Just like when we went to Disney World, these two shared a bed once again.  He is so good with her.  

Speaking of Disney World, I have to say that we reached Disney level exhaustion each night.  It only took us about 5 minutes to drive from the campground back to our cabin, but both Jacob and Grey would fall asleep. I mean out, don't touch me, just leave me here kind of sleep.  In fact one night Jacob was almost in tears saying his eyes were burning, he was going to throw up and he was fixing to faint.  I told him the cure for all that ailed him was to put on his pajamas and get in the bed and so he did and woke up ready to "get after it" the next morning.

I really loved the campfires each night.  Remember now we had about 38 people with us so each night we had a kid campfire and a grown up campfire.  We were all right beside each other but it was just too many people to try and all gather around one campfire.  We roasted marshmallows, made s'mores and laughed a whole lot.

If you're wondering where SK was on those cold Tennessee mountain nights, let me put your mind at ease...

She was truly "roughing" it inside one of our friends 5th wheel, complete with its own fireplace...

 and dachshund.

Sassy didn't feel like she was too far from home with this little guy to snuggle with each night.  Could this set up have been any more perfect for us?

I really can't say enough good things about this trip and the people who were on it with us.  Everyone took such good care of us since daddy wasn't able to make the trip with us. Folks helped with the boys and with SK, our friend Scott grilled all our food for us.  Each night we would drive back to the cabin following the Ropers, who stayed next door to us and I don't think there was one night that they weren't walking to our cabin carrying something of ours.  Whether it was Sophie, our cooler or SK's stroller, they always had something of ours in their hands carrying it in for us.  I could not have done this trip without the Suhrs and the Ropers, hope we haven't scared them off from ever traveling with us again.  Hanging with us is not for the faint of heart.  It was a lot of work and I knew it would be going without Chad.  I never want to have to go without him again, but I am so appreciative to our great group of friends who helped lighten the load and made possible what I thought impossible this Spring Break.

Resurrection Sunday

Easter Morning

Look at those sweet smiling faces.  My kids all in their Easter church clothes posed and ready for pictures.  This picture is so deceptive.  Want to know what was going on behind the scenes?  Well, this was one of about 25-30 pictures taken before we even left for church.  Chad and I were up before 7am in an attempt to get everyone fed, dressed and ready for pictures. "If you're finished eating go brush your teeth," "Have you put on deodorant," and "I still need to get SK's food and meds in her bag," this could have been any given day when we are trying to get out of the house in the morning.  But this wasn't just any morning, this was Resurrection Sunday and our clothes were supposed to be just so and our smiles always genuine never forced.

Here's the deal, I picked out the clothes everyone wore the night before from clothes we already had, gasp and we didn't get around to dyeing eggs this year (don't judge me). This isn't a sprint though it's a marathon and I am giving mama a break this year from all the pressure I put on myself and then all the guilt I feel when I don't come through.  

I want my kids to get more of "The Word" this year than they do candy.  I want us to focus more on "The Sacrifice" than the bunny.  I want them to understand Easter is more than just one day.  Resurrection Sunday is the basis of our faith, we serve a risen Savior and it is every day in the life of a believer.

Philippians 3:10, "I want to know Chirst and power of His resurrection and the fellowship of His sufferings, becoming like Him in His death."  

So if we pushed a little too much, lacked a little patience, took a few too many pictures, ran out the door in a rush and still arrived later to church than we had planned (ahem)...well then we"ll have a chance to make that better tomorrow.  It's the regular everyday things that make life so special with my family...like the unexpected moment I had Sunday afternoon when my youngest son asked me to show him our Resurrection eggs one more time.  I'd love to Grey, let's sit down together and open them up.