Hanging in there

Sophie Kate attended 3 out of 4 school days last week.  I guess I should count that as a win given that it was her first week back.  It's definitely a learning process by all involved getting her back in school.  She has more equipment with her and more individual help with her than ever before and everyone is coming together to make it work...it is no easy task.

Sophie Kate is doing good on her portable oxygen unit.  We are still monitoring her oxygen levels when she is on it at home and we have taken her out of the house while using it twice now.  I say "we" because I haven't attempted it by myself yet.  It still feels like it is so hard to get out with her. We already had two bags with us every time we left the house with her and now we are adding one if not two more each time.  I am also finding it difficult to carry her back and forth from the house to the van by myself.  I knew full well this day would come, but I didn't expect it so soon.  

My head tells me it's just one or two extra bags, it's doable it's not that much more...but my heart tells me differently. My head tries to remain rational, but my heart ends up winning out.  My heart hurts and it's sad and it's having trouble getting happy again.  As strong as she is, she just seems more fragile to me.  I can't imagine what a full blown sickness would do to her right now, so we have to keep her well.  I am constantly thinking about her oxygen levels, the status of her lungs and whether or not she needs to be suctioned.  We haven't been out with her much at all, but when we are I think about when we need to get back home with her.  

We didn't make it through church yesterday because her O2 sats were low and she didn't look good.  She has only made it to one of Cooper's football games and that was the only one he had before all this stuff started.  Three of us went to the homecoming parade with out her this year. This isn't the "norm" for us and I don't know whether it should be now or whether we fight and push to get her back out there.  And that's what it feels like to me right now a fight and a push, I don't know if we should be doing that.  

This is all still very new to us and maybe I just need to give us a break and give us time to figure it all out.  I feel like we need more time to get our feet under us again, but I don't know how much time we will need.  I feel guilty and sad and completely consumed by medical stuff.  We asked Medicaid for more nursing hours since Sophie Kate's care has changed and we were told "no," big surprise there.  

I can feel the battle going on inside my head and my heart, it's a tough place to be in.  I look at her, she makes me cry and smile almost at the same time.  We have more appointments today, more talking about all this hard stuff and more decisions to make.  With no words at all, she has taught me to be content in my circumstances.  She changes the world around her with her smile.  I will see that smile today and through that smile and in those big brown eyes I will see the beauty in this day.

More than words

My oldest child turned 13 yesterday.  I was up and down, all over the place emotionally...loving and anticipating the fine young man he is turning into while at the same time remembering every minute of what that day held for me 13 years ago.  The day God fulfilled my longing to mother, to nurture, to protect, to cradle and to fiercely love an 8 pound 4 ounce balding baby boy.  Some days it seems like just yesterday and then other times it seems like a lifetime ago...that day we became a family of three.

Today he is taller than me and even smarter than me in some areas ummm, like 7th grade math and most things technology related.  Also, he's way more "laid back" than me, definitely not as uptight as I am...although we are both working towards striking a nice balance between the two.  I am realizing my goals and my desires for him aren't necessarily compatible with who he is.  God has a specific plan for Cooper's life and I want to come alongside of him, walk with him, encourage him and parent him as he seeks out that plan and purpose for his own life.

This picture was taken last night at Cooper's birthday dinner.  It is worth way more than a thousand words.  It was the 6 of us out together again.  We were talking and laughing without the distraction of video games and TV. This was the first time we took Sophie Kate out with her new portable oxygen concentrator (POC).  No one was left at home.  This picture, this evening, this experience was made possible by the generosity of our church family. Without hesitation they are meeting needs and folks are blessed. And in turn we go and we do and we share and we serve and we comfort and we love with the love that has been shown to us.  

Humbled and grateful to the God who makes a way when there seems to be no way and provides for all our needs.   

Back to School

God willing, Sophie Kate will start back to school today. Our school system has worked very hard to get everything in place for SK to get back in the classroom.  They really want her back at school and that has been evident by both their words and their actions.  We are very blessed by the community we live in, folks really do love and care for our girl.

She will, however, be going back under a different set of circumstances.  She will have her oxygen machine plugged in, constantly delivering 2 liters of O2 and her suction machine close by her side as well.  This has been so hard. The reminder that things have changed is visible by just looking at her.  She wears a nasal cannula all the time now...an ever present sign that she is not the same girl she was over our carefree summer.  It begs the question...will there ever be another carefree summer?  

Even at church yesterday, I felt weirdly alone.  It's always hard going back after yet another setback with SK.  I feel satan's attacks even there and since I'm a crier...well, I cried.  Following along after SK's wheelchair, wheeling around her oxygen was so very difficult, I wanted to leave every second we were there.  I have only been two other places with her and her oxygen and yes all I wanted to do was to leave those places too.  This has changed everything, it is so hard to get out with her and her oxygen.  We have been so determined to still go and do and to take her around to her brothers games and stuff, but this oxygen thing has been a game changer.  I find myself trying to figure out ways for her and I to stay home.  

It's just plain hard right now.  It took hours and hours of preparation for Chad and I to get her out of the house yesterday morning and even then we were late.  I don't know how I am going to even come close to managing school this week.  It seems like there is just mountain after mountain for us to climb and I am growing weary.  I'm thankful for our church and our community who love us through the hard times and aren't scared off by how difficult it is to continue to be our friends.  A big ole "thanks" goes out to the folks who keep checking and calling and doing and loving and praying.  Please pray for our transition back to school this week.  

Just Us

I was so grateful for this weekend to get here.  We were forced to slow down because all the doctors offices and other places of business like that were shut down.  I had been on the phone with doctors, respiratory therapists, insurances companies and medical equipment suppliers nonstop for three days.  I was ready for a break.  I was ready for us all to be together to heal and recharge, because I knew the madness would start all over again on Monday.

We wanted to talk to the boys and see what questions they might have about what is going on with their sister.  I know Grey is sad that she isn't at school right now because he loves having lunch with her each week.  I can tell he really misses that.  They are handling all the changes really well as far as I can tell.  It's not the easiest thing in the world getting boys to talk about how they are feeling.  

Dealing with insurance companies has been difficult to say the least.  They don't seem to care whether or not we ever go out to eat again as a family, go to a playground, go to church or even ever go on another vacation.  I have been told that they will only pay for portable oxygen (which means the oxygen we use away from the home) when we are going to doctor appointments...otherwise I guess they feel we should just stay home.  Currently I have 12 hours of portable oxygen a month.  Can you imagine only being able to be away from home for 12 hours every month, it's ridiculous!!

I just couldn't take dealing with all the appointments, phone calls, and messages anymore.  I wanted to be with my family without interruption.  My soul was so desperate to hang with these people and to try and shut out the world that we even skipped church Sunday morning...I know...gasp!  Seriously, we needed to slow down and just be and that's what we did.  We had a late breakfast and we sat down together and laughed, we cracked each other up.  

I know they have overheard all my conversations with different folks over the past few weeks, both medical personnel and non-medical personnel and I was tired of talking and I know they are tired of hearing it.  We needed to be still and take inventory.  We needed to talk and share and laugh.  Yes, things are different and we can all feel it, but we needed to come together...the 6 of us...so that we can go out again on Monday.  

I had grand plans of some kind of Walton's family moment, where the young'uns are gathered 'round the table and the grownups share a nugget of wisdom and then everyone helps cleanup.  Well, it didn't happen exactly like that because we like to laugh long and hard about bathroom humor so there's that.  Then nobody wanted to help cleanup so all the dishes sat there until late afternoon, yeah not really the Walton's but completely us.  

I don't want to face the world on Monday, because it hurts and it's difficult, it's not soft and understanding like home is.  I haven't figured out how to get out with our girl and her oxygen yet.  It's going to be harder now.  She hasn't gone back to school yet either because we have to have a meeting about how her care has changed.  We are having that meeting this week.  They want her back in the classroom, they miss her and for that I am grateful.  I was told late last week by someone that she wasn't just mine, that she belonged to everyone and so many love and care for her and our family.  Those words refreshed me and fell on me with such warm emotion, it makes us not feel so alone in this.  

Getting Out

We've been here before, getting the tough news about our girl.  I feel a lot of the same old feelings and fears creeping in...actually not so much creeping but flooding back in. We've also learned from and have grown during the hard times of the past years.  Yes, it takes us to our knees but not to our knees where it incapacitates us but to our knees before our God...this is the place we know.  That familiar hurt, that ache in our soul that we know all to well, but also that safe, protected spot under His wing...pulled in close to Him as He determines our steps, sets the path and leads us on this journey. 

I've learned from the darkness of the pit that first and foremost I don't want to go back there.  Surely I've come farther than this in the last 5+ years that the next bump in the road won't send me back to despair...but I feel the pull to go there.  So I practice the things that got me out of the pit the last time and the time before that and the time before that...then I remember that it's not me that got me out of the pit, it's God.  It's His presence there in the depths, His realness, His tenderness...His healing.  His healing of a mother's broken heart, Him speaking words over pain that should have killed me.  It's Him setting the course and then setting my feet under me so that I can accomplish what must be done during my day.

It's Him catching each tear that falls as I sit with her, hold her hand look into her eyes and tell how how beautiful she is and how much she is loved.  He's there in the darkness and aloneness speaking His truth and love over our family. And it's for our family that we do this, it's for those boys that we persevere, that we pray and that we talk. They need to see how we handle this, they need to see what it looks like for a God centered marriage to weather the storm.  

My daughter appears "broken" to the world, but in my sinful, human brokenness I am far worse off than her.  But because God saw me in my pitiful state and loved me anyway and sent His Son to die for my sins I can now stand before Him redeemed by His Son's blood.  That's the hope that lifts me from the pit, God has conquered sin and death and one day we will live with Him in paradise.  For that I give praise and thanksgiving to the One that's bigger than all this.  This is our story and we will live it out under His Lordship as long as He gives us breath to do so.   

Changes

I seriously cannot remember the start of a school year kicking our butt as badly as this year has.  Not sure where to even go with all this, but after numerous doctor appointments that led to even more doctor appointments along with a trip to the emergency room via an ambulance ride...our girl is now on home oxygen.  Not a place I ever wanted to go with her but here we are.  Mine and Chad's room has been converted into mine and Sophie's room and it looks like a makeshift hospital room.  We have a pulse oximeter because our girl likes to hang out around 85-90% instead of 95-100%.  She is on oxygen via nasal cannula. We have her suction machine plugged in nearby and then her ever present IV pole that holds her feeding pump.  You can't imagine the tubes, wires and lines that are involved. My arms cannot possibly carry it all as I find myself weighed down moving as much of her equipment as possible from the family room to our room when it is time for her to go to bed...weighed down both physically and emotionally.

I've done little more than go to hospitals, appointments, give meds and take care of our girl.  Her cares are consuming a lot of time right now.  We have so much equipment that our family room is overwhelmed by it. There is no looking at her without seeing something different.  She's surrounded by so much stuff now that it's hard to even get to her.  She is wearing her nasal cannula all the time at home due to her need for oxygen.  It's hard not see the changes, it's even harder not to feel them...it hurts, it hurts my heart.  I cannot help but think that things have changed.  I can feel the shift inside these walls and I don't like where things are going.  The boys can tell there's something different going on as well.  We are getting questions like "What is that on Sophie's face?" and "Why does she need all this stuff?"  They can tell that things have changed, she weighs on their minds too, in ways I can't understand...in ways only an older brother can.

I miss my husband being in our bed and you can take that any way you want to but I don't mean it in a way that's TMI (too much information).  I mean I miss my husband and talking to him before we fall asleep and waking up next to him each morning.  Our connection and commitment is strong enough to weather this and I am thankful that he knows when she needs me more than he does and he selflessly gives up his spot in our bed to her.  I want him back in our bed though because it means things are "normal" again in our house and that she's well enough to be back in her own bed.

I don't know how long this is going to last this time but I know things are different.  She is different than she was a month ago, we know new things about her health that has altered we way we care for her.  Our house is busting with medical equipment, it feels like there's no room left and no way to get to our girl.  Pray for us as we're trying to figure out this new road.

I want my summer back

It's a new week and with it comes more doctor appointments.  All I have to do is look at my email account and see the rising number of new emails and I know it's not summer anymore.  The alarm clock, the school clothes laid out, the lunches and snacks are all signs that summer is over and school's back in session.  I long for our sweet summer days as we face more appointments and tests.

We are seeing a new pulmonologist today.  Since SK's adenoids and tonsils aren't a problem we need to revisit this oxygen saturation thing and figure out what to do about her low sats.  This is not going to be an easy visit and will more than likely lead to more appointments and tests. We need to see what her breathing and O2 sats are like at night when she's sleeping to determine whether or not we are going to need home oxygen.  Yeah, it's a lot right now and I am not handling it all very well.  I want my summer back.

I want to go back to where our hardest decisions consisted of whether or not we were going to stay in our pjs all day. Are we going swimming or bowling? Does eggs, biscuits and gravy at 11:30 count as breakfast or lunch?  I don't want to be discussing sleep studies and possible hospital admissions.  I don't want more meds tacked onto an already long list.  I don't want to talk about deep suctioning, it makes me cry and it makes my girl cry too.

Please pray for these upcoming appointments.  I don't know where we are headed with Sophie Kate right now.  I feel anxious and worried and that's not a place I like to hang out.

Jacob did well with all his ear stuff last Monday.  We are headed to the audiologist this week to get his hearing aid adjusted.  He is having a terrible time with his hearing right now.  Thankful for teachers who are patient with him while we are trying to get this all worked out.  

Now do y'all see why I want my summer back?