My home state.

-Florida.Pt.1-

 A few weeks ago, we traveled to Florida with my in-laws. We were blessed to be able to go. The vacation was much needed, and we had a great time. It was especially nice for Elliott. He did so well while we were gone. My mother in-law made these cute travel bags for the kids, with all kinds of goodies inside. And surprises to open every hour as we drove. The kids LOVED the surprises! It helped make the drive go by quickly. 

Elliott and Riley rode with my in-laws. It was strange having only the older two kids in the van with us!But the boys loved it. And I think Jackson and Clara liked 

being able to pick "big kid movies".

My sweet husband drove the whole way. 

Good thing too, traffic was pretty crazy!

(We saw the Oscar Myer Weenie truck though! Check out my instagram for that bnyhle31)

After an eventful night in a hotel in Naples,that involved one asthmatic Riley and a trip to the ER, we headed to Marco Island.

Once we got there, we had to go see the beach. 

Even if it was freezing, and windy! So, we made the grand trek to the beach, fishing poles and camera's in tow. Jackson was SO excited. As were the little boys.

 Not realizing just how frigid it would be 

once we got to the beach.

I loved watching the boys run to the beach with full abandon. I told Brandon later, in my mind, majestic music was playing at this moment. And then we hit the beach.

Even when freezing, it's still so beautiful.

The little boys went right to digging, while Dad and Brandon observed just how choppy the waters were.And realizing there was no way fishing would be happening tonight.They stood there, as to hope if they just waited a little while, the waters would calm, wind come to a stop, and they could fish. But, it didn't happen.

Boys digging for sand fleas. No luck.

Clara was so cold, and tired. And just not feelin' it. 

I found it rather comical, 

considering the sunset was glorious. And she was not enthralled at all.

The moment Elliott ran into the ocean, only to be hit by a very big and cold wave. He took it like a champ. And laughed about it. No matter how cold and windy, the beach is my favorite place to be. We didn't get to spend much time there, but the little bit we did was glorious. Even if my kids kept asking to leave and go swim in the pool!

 I was determined to make them beach bums. 

Alas, the weather didn't co-operate.

 More to come on our adventure to my home state!

Flare.

It's a word I associated with emergencies. A bright light shot up into the sky at night. A warning. SOS. A light on the road to warn you of an accident. This is the definition of "Flare": A sudden brief burst of bright flare or light. To burn with a sudden intensity: "the blaze across the water flared".

Flare.

It means something different now. And I wish there was a warning. A bright light to shoot down from the heavens to warn of impending pain. Oh it burns alright, and it's sudden. But not always so brief.

A flare now means inflammation, pain, joints aching, sleeplessness, rash, fever, itching, lethargy.

A Systemic Juvenile Idiopathic Arthritis Flare.

To think that not too long ago, I didn't even know what Systemic JIA was.

 Elliott has had a bad week. His body swelling all over it. Rash covering his tiny frame. Catching him itching so hard he breaks his skin. Barely being able to walk from his bed, to the couch. Hobbled over like a little old man, not the six year old that he should be. Not to mention, complaining his tummy hurts so bad. (The lining of his stomach, intestines and liver, have been affected and have shown inflammation.) Then there's the headaches. Likely due to the fever.

(Taken a few weeks ago, Elliott is a ham!)

It's horrible to see your child in pain. As a parent you want to take it away from them. I can't tell you how many times I've said "I'm so sorry your hurting.". Or prayed over him saying "God, please, I beg of you, give him rest from this pain. Take it all away. Restore his body."

I haven't been able to shake the image in my head, of my Savior Jesus, on the cross. As a parent to see your child in pain and suffering is the hardest thing in the world. To imagine what God went through watching His Perfect Son, suffer for me. Brings me to my knees.

If I'm walking this trial with my baby boy in my arms, because he is in too much pain to walk. To get just a small glimpse of what it was like for My Jesus to carry the cross, he would later be hung on.

I choose to say "Blessed be the Name of the Lord!".

We have some major decisions to be making soon, and would covet your prayers. I'm looking into alternative treatments, a new Rheumatologist, and we are having insurance hang ups.
Specific ways you can pray:

1.) Elliott needs an adapted wheelchair. We've been in the process of getting one for months. Insurance issues. Pray we can get one approved soon. With little, to no out of pocket expenses.
2.) Elliott's current medications aren't working. Wisdom for us, and his doctors on the next course of action.
3.) Sleep. He can't sleep. Pray for rest.
4.) We are working on transferring his care to a different doctor/hospital. Pray, if this is what God wants us to do that the transition goes smoothly and quickly! And if it is not what God want's, that would be made very clear.
5.) Insurance. It's been a mess. I've been on the phone daily. Pray it gets resolved.
6.) Elliott needs physical therapy. We were on a waiting list, only to find out that therapy center doesn't accept our insurance. Pray God leads us to a therapist/center soon, or provides the funds to be able to pay out of pocket for therapy.

Six requests. For our sweet six year old Elliott. We really do appreciate you taking the time to pray for us!

This song has been on repeat at our house. Especially late at night. Elliott knows every word. 

Thank-you for loving our family. 

We are so blessed to have a community of 

family and friends that is lifting us up before the Lord. 

Family...

Hey friends!
I apologize for the break in blogging. If you follow me on Instagram ( bnyhle31) you know that we spent four days in the hospital with our youngest. Riley came down with a virus that he just couldn't shake. Poor guy was miserable. Thankfully he has recovered, and is back to his happy self. And he turned 5 years old last month! Still in denial that my youngest baby is now five! Time flies SOOOOO fast!

I haven't forgotten that I promised to share more pictures from our family photo shoot last year. I post these with a heavy heart tonight. My brother deployed overseas, and is gone for a while. We are thankful for his service to our country, and that he won't be stationed in a very dangerous location. But, he will be missed while he is away.

I am so thankful to live right next door to my brother and his wife and their two precious babies. I love their babies like my own. My nephew even proclaimed this week as his Mama was telling him it was time to go...
"No, I don't want to leave Aunt B's house, I stay here, forever." Sweet boy, I will keep you forever too!!! Sure did make this Aunt B's heart soar. I love that not only does he know who I am, but that we have a close relationship. And my sister in law is one of my closest friends. Really, she is the sister I never had, and always wanted growing up. My brother did good.