Thursday, February 27, 2014

Sick and Tired

This is not going to be a popular, "warm and fuzzy" post, I'm just going to go ahead and put that out there.  I have sat at home with my daughter for over 2 months now patiently waiting for her to heal, for her to feel better and she is.  We still have another month to go before she can go back to school.  Do you know why we have to wait another month for her to go back to school?  It's not because she is not ready, she's doing's because folks won't stop sending their sick kids to school.  It's because we are waiting for the "sick" season to be over because parents won't keep their kids home when they are sick.    To tell you the truth I have absolutely no problem with keeping Sophie Kate home during the winter months, because I know that even if the sick child stays home their siblings could be carrying germs as well and those kind of things just happen.  My boys pick up germs from school and bring them home that's why they stop at the door and change clothes and then go wash up before they are even allowed in the same room with her.  I get those kind of things and I know they are going to happen and I am fine with keeping her home during the winter months.

Here is what I am not fine with....I am not fine that Spring is approaching and there is still a question concerning whether or not she is going to be able to go back to school. I am most certainly not fine that my healthy, smiley, school loving girl may not be able to attend her wonderful class because parents won't keep their sick kids home.  My emotions are all over the place with this, I go from raging mad and wanting to scream "It's Not Fair" to looking into her big brown eyes and knowing in my heart that I have to do what is best for this little girl above all else.  

Things are going to happen at school, germs are going to be spread and kids are going to get sick while they are at school and I know that full well.  Teachers are doing everything possible to keep hands, desks and rooms clean and I know that as well and I am most definitely not speaking to those things.  When I used to send her to school, I knew those things loomed all around.  What/Who I am speaking to is parents who know full well their children are sick and send them anyway!!  I am also speaking to those parents who send their kids out the door with a full dose of Tylenol, Ibuprofen or your fever reducer of choice on board...please stop doing this!!  Children are not supposed to return to school until they are fever free for 24 hours and that is the point at which many parents stop reading.  There is more to that sentence...children are not supposed to return to school until they are fever free for 24 hours...wait for it...WITHOUT FEVER REDUCING MEDICINES ON BOARD!!

Let me take a minute to explain how this affects my family and more specifically my daughter.  Let's even for the moment take out how sick she was this past December, let's take that event off the table for now.  Prior to this past December, when Sophie Kate would get sick we have to immediately take her to the doctor.  We can't just "wait it out" at home and see if things are going to get worse. When she gets sick we are seen by her doctor that day.  She then ends up missing anywhere from 3 days to a week or more of school just for a "run of the mill" illness like a sinus infection or a bad cold.  Sophie Kate is not immunocompromised like a person taking chemotherapy might be but she is immunosuppressed which means when she gets sick she is not able to fight off illnesses like a typical child would.  There are many reasons for this but the main reason is because she is non-mobile and as a result she cannot mobilize her secretions and get them up and out like a typical child can.  This, along with difficulty in coordinating her swallow, is how simple colds and such can lead to pneumonia for her.

Now let's add in the viral pneumonia (metapneumovirus) we dealt with this past December...since then Sophie Kate's lungs have definitely been compromised.  Her doctor did not mix words in telling me that in the months following December another illness would most certainly land our girl back in the hospital, that is why we are choosing home bound school for her right now.  He also didn't mix words when he stated that since she enjoys school so much he most definitely wanted her to get back in school come spring.  We are not in the business of blaming folks for our circumstances and we will not under any circumstances jeopardize the health of our princess.  If it is best for her to participate in home bound school for a time to heal then we are all for it and all in.  However, if a healthy Sophie Kate must continue to participate in home bound school because grown ups are not behaving responsibly then I have a big problem with that.

If y'all could just see this girl at school you would know how much she loves it.  They do so much with her, she receives all of her therapy there.  They have special equipment for her there that we do not have at home.  She enjoys interacting with her classmates and her teachers and everyone else that sees her at school and yes she does interact with them.  She is making progress there and they even have her making choices at school, it is amazing.  To say that it makes me sad that she may have to give those things up is a huge understatement and simply should not happen.  My healthy girl should not have to stay at home because of selfish parents sending their sick kids to school.

While I am on this subject I may as well get it all off my chest at once...I have also witnessed this "sick season" sick parents out and about dragging their sick children along behind them.  This is the reason that none of us, not just Sophie Kate, got out much in December or January because people won't stay home when they are sick and they drag their sick children out with them.  For the love all things healthy and I know I am not just speaking for myself here...STAY HOME!!  OK I think I may be done now.

If you are among the parents who keep their kids home when they are sick and do not send them back to school until they are well, let me say a big "THANK YOU!!"  I wish there were more of you and my family and I appreciate your consideration.  

I told you that this would not be a popular, "warm and fuzzy" post but it's something I feel strongly about and deal with every single day.  It is always on my mind, please keep it close to yours as well it would benefit us all.

Monday, February 24, 2014

Catching Up

It was so beautiful here this weekend.  Sixty and seventy degree weather makes us long for spring, however I see that it is going to be short lived since we will be back in the 40's by midweek.  No worries though, we have taken every advantage of our spring like weather.  Sophie Kate has been out in her stroller on walks and just outside in general...outside these four walls.  It has been good for her and us.

Her homebound teachers have been coming to our house as well.  This past week she was seen by three therapists and one teacher.  They do so much with her.  I love to watch them work with her.  I see her respond to them and I know she is missing interacting with them everyday.  They put smiles on both of our faces.

We had a dentist appointment x4 as I like to call it around here and you know it's been a while since you've been out of the house when you dress like this to go to the dentist...
A bit overdressed for the dentist...maybe, but sister has been in her fair share of pjs and "comfy clothes" for the past 3 months.  I will add that she is a beautiful soul in whatever she is wearing, but we had fun with it nevertheless.  It is quite the task getting four up and out to the dentist all at once.  I'm not sure if it might be easier to divide and conquer but whatever the case we are done for another 6 months except for the ones that have to see the orthodontist now...yikes!

Everyone is done with basketball and we are taking a break for sports this Spring.  This is how SK and I feel about that...
We're excited for Spring and warmer temperatures and feeling better.  Now I am going to leave y'all with the funniest picture from our weekend...
Frank listening to some tunes, makes me laugh.  That is all.

Monday, February 17, 2014


I get asked a lot how Sophie Kate is doing.  My response? She's doing good, she looks good, she's smiling and seems to be feeling good.  That response is quickly followed by "she hasn't been anywhere though, she's mostly just been home."  We have taken her to see her brothers play basketball a few times and that has been it.  

I know it sounds strange to say I miss her even though I am the one mostly at home with her but I do.  I miss her being with us every time we leave the house.  I miss our life before this sickness and before this continuous oxygen thing.  I miss seeing that face without oxygen plastered across it all the time and at the same time I am thankful for it.  

It's hard to get out with her now.  I think I have done it one time without Chad's help and that was for a doctor's appointment.  I feel the shift.  She is so tall and so heavy.  I can still carry her to the van but just barely.  Then there are all the bags...her backpack, her food, and her oxygen.  We have been home with her for so long.  Will I even feel like getting back out with her when spring comes? 

This is the point where I think about my friends whose children are in heaven.  This is the point where they are boiling mad at me for whining about how hard things are here.  I think about them, I remember them and I sit beside my girl and hold her hand thankful for time. I will climb out of this hole I feel like I am in with them on my mind.  

I have always considered each time period in our lives as a season.  When babies were not sleeping through the night I knew it was just for a season.  When days were long and exhausting with toddlers, I knew it was just for a season.  I know that this is only for a season as well, it just hurts worse than some of the others.  

My friends whose babies are in heaven, please know I do not take the fact that I can still hold her lightly.  I do not.  I touch her, I sit beside her and I look in her eyes with your babies names on my heart and mind.  God's love reaches to the depths of my hurt.  His comfort touches the pain I can't even speak about.  

Thank you all for continuing on this journey with us with your kind words and your prayers.     

Monday, February 10, 2014


"You have never really lived until you have done something for someone who can never repay you."  I saw this on Facebook about a week or so ago and didn't give it much thought at the time.  I usually don't even read all the stuff I see like this on Facebook, but this one stuck with me and my mind kept going back to it over and over again.

There are lots of reasons we do things for others and yes some of those reasons can definitely be genuine and honorable.  They can also be for selfish reasons as well if we're really honest about it deep down inside or maybe y'all just aren't as prideful as I am.  However, when we do something for someone who can never repay us it takes on a whole different meaning to both the giver and the receiver.

If I don't brush her hair, who is going to?  If I don't wash her face each morning after my people have left for work and school, who is going to?  Even more critical are her feedings, her medicines, her breathing treatments and her oxygen...who will do all those life sustaining things for her if I don't?  I sit by her side and uncurl each little finger so that I can clip her fingernails when they get too long.  I stretch her each and every day to try and fight against the contractures that are taking over her body.  

Ephesians 2:10 "For we are God's workmanship created in Christ Jesus to do good works, which God prepared in advance for us to do."

God prepared me in advance to care for this little girl.  He has prepared me all my life to mother these boys and their sweet sister.    I am in no way trying to bring attention to myself or what I am doing.  I have been called to be a servant.  Christ showed us what the life of a servant looks like in His life on this earth.  I am called to serve; and each act of service I do for her is overflowing with more love than there are words for.

We have also been on the receiving end of such things. There are folks we will never be able to repay for the help and kindness they have shown us.  They continue to give anyway...that is a servant's heart, it is born from a place of selflessness.  God is very specific in the Bible that we are to place others above ourselves.  In a world that focuses on self, we are called to do for others.

Please allow me to share two more verses that I took away from Sunday's message at church...

1 Corinthians 4:2 "Now it is required that those who have been given a trust must prove faithful."

I Corinthians 15:58 "Therefore, my dear brothers, stand firm.  Let nothing move you.  Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain."

So on the hard days, and they are hard and it hurts deep, I have a promise that my labor in the Lord is not in vain.  In reality, it's true that Sophie Kate can never repay me or her daddy for what we do for her every single day, but we know different.  We are repaid every day in smiles and in eye gazes and in hand holding.  We are repaid in seeing her brothers do for her and for others.  We are repaid in living this life with this little girl and these three boys.
We have been given a trust, Lord may we always strive to be found faithful.       

Monday, February 3, 2014

The Magic of Disney

More from our November Disney World trip...I know I have posted one of these pictures before of Sophie Kate with her fairy godmother, but I just loved this sweet lady so much. She had so much to say to SK, it was so so sweet.  All the folks waiting behind us just had to wait because she was not going to be rushed.
She told our girl that they would have tea parties together in their dreams.  I understand that that may sound a bit cheesy right now, but it wasn't cheesy at all in the moment. In fact I may or may not have teared up a bit.

 She was a treasure.

Me and that guy would do anything to see that look on her face everyday.  We would ride the teacups till we puked if we had to...that face is priceless and makes me do everything I do.  

Chad got a great shot of Cinderella's Castle while we were waiting for the Electrical Parade.  I love SK's face during that parade I hope she loves it as much as I think she does. I know she can see all the lights by the way she watches each float come by.

How about some extra magic hours? Yes, please!  And how about that smile at midnight, still going strong.  She doesn't want to miss a minute of the magic.
 Hello Tinkerbell!

The boys suffered through the Disney fairies for their sister.  Next on the agenda was to ride rides until we shut the place down. 
 Open the parks and shut them down, that's how we do it.
 Always a Princess...
with her knight in shinning armor never far away.  A fitting end to another wonderful day at the Magic Kingdom.