Some Sunday family pictures

I did take some pictures of the kids today that I wanted to share.  I love these pictures. 


This is before church.  I tried on this dress I bought sometime last year at a thrift store for $1...it fit perfectly and she is just so beautiful in it.  I need to crop out my bed and just have her  in these....

 

 

she is regal:)

 

 

 

 

 

 

 

 

 

 

 

 

 

Is this perfect or what except for my crazy quilt background.  Sarah is so sweet. 

 

 

 

 

the boys:)

Sarah is fascinated with Shad right now.  She always wants to sit by him and gets right up in his face (we think to see him better)  it is so cute to watch them. 

 

 

Selah getting ready to go night night

 Purple casts

She's a little more alert

 

 

I'm thankful for and love all of my children.  I feel extremely blessed to be their mom. 

My thoughts ....

Selah is doing fine, had a good night.  She doesn't like being out of bed much with the casts on.  She only tolerates about an hour before she gets her sad face and tears.  But we are turning her and doing lots of range of motion even while she is in bed.  Two weeks and one day till these blasted casts come off!  I got the most sleep last night that I've gotten since the surgery. 

Today as we fast approach the one year anniversary of our trip to go get the girls, I am so sad inside.  I look at Sarah and see how far she has come and then I look at Selah and see what she has lost.  This afternoon I went out on my swing and looked up at the sky and just begged God to send Selah back to us....I don't want her any different than who she was before the accident.  I just want her back....  I look at the sky, the trees, the grass and I know God made them all...I believe He is the creator of Life and this world....

I had a dream right after the accident that Selah "came back" cognitively but she couldn't walk....it was so real and we were at home in the dream.  I've never claimed that was a dream from God, I sure hope it was but I don't know.  Every dream I've had about her since the accident involved her being healed.  Again I don't know if that is God or if it is just my own thoughts and hopes....

I read other families blogs or facebook pages if they are sent to me.  Reading over some of them would make me think I'm not very spiritual, I'm not claiming anything or speaking anything over Selah.  I'm also not exaggerating anything either.  I think I go the opposite extreme and down play stuff because I don't want to act like everything is just fine and she is healed....It's not and she's not....  That is the truth.  Some of the pages make me sad for the child and family as they are obviously projecting onto the child's situation what they want to see.  Let me tell you I'm not projecting, I'm telling you how it is and how I feel. 

But...I still know there is a God who loves us.  You may not understand that.  You may think that God should be required to step in and "do something"  But that is not God, that is not his word.  He could magically make everything perfect this very second but that is not what He has promised.  He has promised to walk with us "through the valley of the shadow of death"  He has kept that promise to me.  He is still keeping that promise, even as my tears fall like rain as I type this. 

I've experienced God's strength and grace in a way I have never known before in my life.  I am so thankful for that Grace and Strength.  I'm not shouting and dancing with joy right now.  I'm crying and feeling despair but I still will trust Him.  When I look ahead in the future, it does not seem very bright to me.  It's scary, not just because of the unknown things ahead but because of the known things that lie ahead. 

But I cling tight to Him....to the One who knew what was ahead for us and sent that lady to speak a word to me in the Mall....  I don't know why all this happened, why God didn't prevent it from happening...but I don't blame God either....  I don't understand things but I know God sent that lady to speak to me and to tell me "Something Big was ahead for our family, many would see and Do NOT be afraid"  She claimed that word came from God and I could tell she was a christian from how she spoke.  She wasn't some kind of new age psychic...

As we have walked through this God has provided everything we have needed.  EVERYTHING!  Jon was without a paycheck for months and we really didn't even notice it.  We didn't think about our needs as we were so focused on Selah and yet God met them.  I'm thankful for that testimony.  I know God will provide us a van that will fit her wheelchair and even a house that is fitted for her....but honestly I pray that we do not need that!   We had so many offers in the beginning of help that we turned down because we could not focus on anything but Selah.  I asked folks to give us time to see what we actually needed and what we were going to do.  I had hoped that Selah would receive a miracle and we'd just go back to our little house....  I'm still praying that we will not need anything else for her because she will be healed.  I'm quite the fund raiser/grant finder but every time I think to do something, I just can't do it.  So I figure God knows what we need, when we need it and He'll take care of it when we need it IF we need it.

But I'm sad, not alot of fun to be around right now.  I force myself to focus on other things with my family as I know my kids need me too.  My heart is so heavy some days still it feels like it will break.  How can a little girl that I only knew for a few months break my heart like this?  It's because she is my daughter and I can not stand to see her like this.  I miss the funny little girl she was so much that it takes my breath away literally......

Right now we have her on several meds to dull the pain, take away her anxiety...which takes her even further away from us.  It is so hard......I will be glad when she gets through the next two weeks but it's not like she is going to just become normal again, even after she is off the meds...outside of a miracle. 

Please pray for Selah, pray that God will give us a miracle.  I just want my little girl back, I feel like we've missed so much with her.  I know I'm not the first mom to be in this situation and I surely am not the most spiritual or the best, I'm not asking for God to heal her based on my merits...but on His grace and mercy. 

Exhausted

I had planned on staying up till midnight last night and giving Selah all her meds.  Then Jon was going to do the 2 am and 6 am meds...THEN....her feeding pump did something and pumped out her feeds on the bed and her so we were up cleaning ...I think I went to bed at 4 or so...not even sure but I did sleep till Noon:)

I am exhausted tonight....I'm usually a person who goes to bed around 10 or 11 pm and gets up at 6 or 7 am and feels great.  these past few weeks have kicked my butt!  I keep telling myself "only two more weeks till the casts are off" she will be back to her regular schedule then and hopefully back to peaceful nights!   We had stopped having a night nurse for several reasons and had had no issues until now!  I've asked for one a couple of nights a week so we can plan some things with our family, so we'll see.  I'm picky about nurses and now know what to look for and what to avoid! 

Selah had a peaceful day with her Franciscan Monk, who is quite happy with the new pope:)

So today I went through my husband's closet.  As a chaplain and department head, he has a dress requirement.  Sometimes it is not enforced and sometimes it is...we are in the sometimes it is right now....So I gave his closet a good cleaning out (he tends to hoard old things lol)  I ironed and put together about 2 weeks of clothes so I don't have to bother later.  He will actually be wearing a tie....   Ironing is strangely soothing to me...  so I watched the news and ironed for a couple of hours...  Also the kids will have ironed clothes for church tomorrow:)  Remember I have a psychology minor....I totally get myself LOLOL  Ironing is safe and doesn't take any thought effort, it's soothing:)

Please pray for our Thursday nurse, they released her from the hospital but her 14 yr old daughter was having surgery at another hospital today due to the injuries she received in the head on collision.   Please pray for both of them!   Please continue to pray for Selah!  Please pray that we get a good night sleep tonight.  I am so tired! 

Cast change ~ good news

We got up really early this morning after being up off and on all night to ensure Selah had all her meds.  Selah had her casts changed.  Before the procedure I talked to our Doctor about how uncomfortable she has been and was a bit discouraged.  He thought she might be having such muscle cramps that her legs/feet will go right back to the state they were in before the surgery.  However after he came out he was pleased with her response.  He said that things were really good and he didn't see any muscle spasms.  Her legs/ankles/feet had really good range of motion.  She was healed up and her skin was great under the casts!   Of course she was under anesthesia so she was not fighting him any but things could have been alot worse.  She was fitted for AFOs, soft braces to wear during the day and a pair to wear at night.  She won't be required to wear them 24 hours a day but probably at least 20 hours a day to keep things nice and in place.  I saw the casts for the AFOs and it looked like casts of a "normal" foot/leg:)   She will get her casts off for good on April 1st!!!  I can NOT wait!  I'm sure she will be glad too!  The new casts are PURPLE!  They have to match her Easter dress:)

The doctor suggested going up on the Valium for the next two weeks to help keep her calm.  She has been calm today despite the early morning trip to Tampa and all she has gone through. 

I have to say I really like St Joe's, it's a good hospital and we have been treated very well there.  I'm glad we made the choice to keep all her specialists there at St Joe's rather than All Children's.   Every time we are there, some staff just seems to go out of their way to express kindness to us.  I really appreciate that.  Today several staff members were just so helpful and kind.  The nurse who checked us out, found a box that I could put under Selah's feet in the car to keep her more comfy:) 

We have decided that we are going to start looking for a handicapped van, one of the bigger kinds with a lift.  It is so hard to get her into a car seat and so upsetting for her.  Please pray that I'll be able to find some organization that helps with things like that!  I'm also going to research more in to HBOT, (thanks for all the info that was in some remarks back a few posts!  I'm using all that info!  Thanks!)  Those are the two things I'm going to look into for her. 

Thanks for your prayers today, things couldn't have gone any more smoother!  Please pray that she will be comfy tonight so I can get some sleep.  I am exhausted!!!!  This afternoon I went outside to read wile sitting on our outdoor swing...next thing I knew I was sleeping on it!  We had beautiful weather today and it was nice to sleep outside!

  Also please pray for one of our day nurses, I was told she had a car accident today.  She is only here once a week but we like her so much. 

Surgery tomorrow! Thoughts on the new Pope

Selah had a better day today.  I set my clock and got up and keep the pain meds going even when she was pain free to stay on top of the pain/discomfort.  I am tired but she did much better today.  She sat up for about 4 hours and that was good for her:)   We kept the meds going every four hours and she never got uncomfortable. 

We are going to have a short night between the meds and getting to St Joe's early in the morning!  She will have her casts removed and replaced.  She had bleeding in one foot so that one needs to be changed out and this way they can eyeball her leg/feet and make sure everything is ok.  She seems to have a lot of discomfort.

We finished up the garden today ....just in time for FROST in the morning!  In Florida?  In March?  Geez!  I had to cover all the plants up, not too worried about the seeds, they will stay warm in the raised beds but some of the plants can't handle cold too well. 

I cooked a pot roast in the crock pot today and made biscuits from Red Lobster:)  A friend had gotten me a box from Sam's Club to make and they were good.  I got the little ones their baths, and everyone is in a food induced coma so we're all going to bed early tonight!  Ok that concludes my day.....

So a quick thought on the new Pope...maybe I've become more  ecumenical  over the years but I am very excited about this new Pope.  A man who lives a humble life...reaches out to the poor and needy....  and I see my excitement echoed by so many, Catholic or not.  Why?  I believe it is because the world is yearning for REAL people, people who are authentic and really live the life they talk about.   We are tired of hearing about the gold toilets and the private jets of many of the world religious leaders.  We are looking for someone who is down to earth.   This man brings that hope that there are still good people in the world today who want to SERVE and not be served.....  I hear stories of missionaries who have their own maids....it's laughable....I LOVe hearing about a man who takes a bus to work....  He was the one of the  leaders of the Catholic Church for Latin America yet he didn't need an entourage....  I've met pastors of relatively small churches , just a few hundred people who had to have "armor bearers" to help them out LOLOL  If you've read my blog very long at all you know stuff like that makes me SICK!   He has shown a good example for ministers of every denomination to follow....Live simply, focus on the needs of others.....    Why do we, as ministers, feel we have to look successful?  I know ministers who get into debt buying a certain type of car so they "won't bring reproach on the name of Jesus"  Ummmm REALLY??????   It is laughable IF it weren't so sad and sick.....  Things like that don't matter in the least bit to me.  As long as a car has A/C I'm good:)  (well I do live in Florida)  Someone gave us a brand new van last year and don't get me wrong, I have enjoyed the heck out of it....BUT that was not something we were even thinking about, much less praying about....it just happened and we were blessed but we weren't striving for that and were perfectly content with our 2000 Dodge Caravan....  When you think about how short this life is, and what really matters, then all that other stuff should just fall by the wayside as we serve God by serving others. 

I read a cute joke about a rich man who begged God that when he died he wanted to take some of his wealth with him.  So he died and God let him take a suitcase full of wealth with him.  When he got to the Pearly Gates, St Peter had him open it.  St Peter was so confused and asked the man WHY he had brought part of the street with him....  (he brought a suitcase full of gold...but in heaven the streets are gold so it would be like me taking some asphalt along with me and thinking it was just wonderful.  )  Gold is nothing in heaven, we'll walk on it, that's how "rare" God sees it.....not rare at all. 

We should remind ourselves not to think too highly of ourselves and even more so if we are ministry!

Ok that is my thought for tonight.....

Please keep praying for Selah, especially tomorrow morning.  She will have to go under anesthesia for the casts to be redone but it will be quick.  Thanks for your prayers.

Day 129 FOS ~Rough Day~ Garden pictures

Selah has had a rough day.  She woke up about 5:30 am, I gave her her pain meds and changed a poopy diaper.  Then she was calm and went back to sleep.  Jon got up a little later and she was fine.  But by the time the nurse got her, she was in pain again (I had just given her Motrin as we don't want to give her too much Tylenol with codeine.)  Her blood pressure was high.  She responded to the meds, but was upset off and on all day.  She didn't want to sit up in her chair at all.  THEN her gtube came out again!!!!!!  The balloon had burst, the balloon holds the tubing in.  Thankfully we still had the old smaller one....tomorrow we are getting TWO!  We think that we have just gotten some bad ones.   So tonight we are keeping her on a strict pain management schedule.  She is going to get the meds, even if she seems calm, otherwise it just sneaks up on her!  She will have her casts removed on Friday and changed so we'll see if there is anything going on that is covered by the casts.  She hasn't ran a fever but I just feel so bad for her. 

The boys and I did finish more of the beds in the garden today.

 

Here's me in my happy place:)  The two beds behind me I put in onion bulbs.  And the one on the right side back has potatoes in it  I have 15 square foot gardens.  Each are 4 feet by 4 feet and so easy to maintain.  I also have about 20 strawberries hanging up and 2 handing tomatoes plants and herbs in containers. 

 

Sitting on the swing with the ONE remaining cat I can pet, Henry.  I have Lavender in both of the pots beside the swing and that is a honeysuckle vine behind me. 

 

 

 

 

 I could look across the yard to where the boys were watering the plantings:)  I'm a good supervisor. 

 

Really liked the news about the new Pope.  He sounds like a very humble man.  I love what I read about him "As archbishop of Buenos Aires, he reportedly rode the bus to work, did his own cooking and visited the poor in Argentine slums. Instead of living in an archbishop's palace, he chose to live in a small room in a downtown Buenos Aires home. "   Also "The name Francis is a clear indication of his desire to focus on the poor."  He is very conservative as well as pastoral.   We need ministerial leaders who are humble.....  Like the name he took, Francis, no one is sure why he chose that name exactly but one of Selah's nurses is a Franciscan Monk although we don't know alot about the different orders in the Catholic Church, we know some and like the sacrificial lifestyle embraced by that order. 

 

http://natepyle.com/confronting-the-lie-god-wont-give-you-more-than-you-can-handle/  This is a blog written by a pastor.  A friend sent it to me knowing how much I HATE when someone tells me "God won't give you more than you can bear"   Since that is NO wheres in scripture, it drives me BATTY!  This is such a honest, good post....I've subscribed to this pastor's blogs, I love honesty and sincerity and I see it in his writings. 

 

One more thought before I close....

 

http://everlastingmomentum.blogspot.com/2013/03/our-jonathan-is-arms-of-god.html  This family was just a few weeks from traveling to adopt their son.....he passed away....never having known the love of a family....please pray for their hearts right now....I was so afraid of this happening to Sarah, since she was so obviously weak and frail....I can imagine some of their pain as I too got a phone call telling us the little boy we'd loved had been adopted by another family.  We grieved....but we knew he was going to be loved...of course this little guy is in heaven and has the love of God with him now but it still must hurt this family so much.   Please keep this sweet family in prayer!

 

Please pray that Selah will have a good night tonight!  Thank you for all your prayers for us and for others!!!!!

Day 128 FOS

This is feeling alot like Ground Hog day the movie.  While Selah is in the casts our days/nights are filled with keeping her comfy.  She had PT today but had a tiny bruise by her gtube with a tiny cut in there.  Maybe she did too much yesterday in PT although she didn't seem stressed by it.  I did buy her a manual BP machine that is made for children.  I actually learned how to work it:)  I swear I'm going to be a nurse before this is all done

Some friends called me this morning and invited me to  breakfast...that was nice and a mood lifter even if I did cry some....I've turned into Ms Waterworks now.  My emotions are just so raw right now. 




Shad and Steve cleaning out my square foot garden beds

 

my giant collard greens!  Despite little care they are still huge!  I cut some of the others down yesterday and cooked them

 

 

 Look in the very middle of the picture that is an asparagus coming up out of the ground that took 2 years to grow!

 

Steve and Shad hard at work

 

 

The boys helped me by finsihing cleaning out the garden for me.  I bought a few more plants and some bulbs (potatoes and onions)  Today was a great day for the garden rainy and overcast.  Perfect for the plants I got in yesterday.  Wish I could have gotten more plants in but had to get some more garden dirt for the garden.  I really love having a garden!  I can't explain why but it is just fun and relaxing to me.   Square foot garden or box gardening is so easy.  I also do the container gardens too and lots of hanging up plants. 

Please keep praying for Selah!  She will probably have her casts changed this Friday I hope it won't be too hard on her.  Lookiing forward to the casts coming off for good...3 more weeks!