Sunday, August 31, 2014

A Need In Our Life

I have put off writing this post.  I don't like sharing our needs.  It is humbling for me.  

Every once in a while we have a big need in our life we can't meet no matter how much we want to, or try.  Usually, it is for equipment for Antonio.  It usually is something that cost a few thousand dollars.  We are average people, living an average life.  Tim is the manager of our local Chick-Fil-A and I am a stay at home mom.  We live modestly and all our income is funneled into caring for, providing for and raising the family God has given us.

We rarely eat out.  We do inexpensive, special things as a family.  I don't buy the newest latest fashion in anything.    We use everything from clothing to items, till they are plum worn out.  What we don't need and is still good, we give to others.  God freely provides for us, we freely give to others.  I don't buy and wear make-up.  I don't buy jewelery.  I cut most of the children's hair.  Tim and I...we rarely buy new clothing.  Most of our clothing we have owned for many years and was bought from thrift stores.  We are careful with our budget because we have to be.  We never know when we are going to have a surprise hospital stay or surgery for one of the children and that could eat what we have left for a month and sink us financially.  We have to try to be prepared for the unexpected because our life is just one big unexpected event after another.  God provides time and time again. He sends wonderfully, kind, people along, that feel led to donate gently used clothing to us, in just the right sizes we need for the children.  People share from their gardens with us.  We live very blessed and happy but simple lives.  It does not take a lot to make us happy because we have lived the extreme of serious times and know the full meaning of a good day.

When we have one of these large needs come up, we usually just share the need with a few people, so they can keep it in prayer...we pray fervently about it and in Gods time and in Gods way, things come together and God provides mightily, amazingly and abundantly.  He is always faithful.  He is always with us.

This blog has been a blessing to me.  It is an outlet for me to share my heart and life with family and friends around the world.  I have met some amazing people thru this blog.  Made some great friends.  I needed that.  I have been blessed every day by this blog.  God has used many of you to regularly encourage me.  Often when I am having a hard day, God will impress upon someone to send me a message and it is just what I needed, to feel encouraged and get thru the day, without staying discouraged.   I have had people write to me, to have me join in prayer with them, for huge things in their lives.  In return, I have shared things with them we also needed extra support in prayer for.  It has been a huge honor.  God is so good.  People have been extremely kind.

Today, I am going to share with you our vehicle situation.  The van we have now has served us well for many, many years.  God brought it to our attention, when we were in just the situation we are in now.  It was just what we needed when we needed it.

We had stopped doing foster care and had moved into a small handicap mini van.  We used that van for a year or so and then Antonio got a new wheel chair.  It was larger than the one that fit in the mini van.  So we had to literally pick him up, in his wheel chair, to get him into position and facing the right way.  Tim, William and I, at one time or another, threw our back out, getting Antonio in or out of that mini van.  We were in desperate need of a bigger handicap van. 

I was daily praying and searching the internet for larger, affordable,  handicap vehicles and one day, when I checked, there was the large grey van.  A man had just listed it.  It was in great condition and for a fair price.  I called immediately and he answered the phone on the first try.  I said I was calling about the grey van...he interrupted me, stopped me short and said..."Do you have a handicap child this is for?"...I was taken aback by his interrupting me and stammered out yes.  He said, "Than you can have it for less than what it is listed for."  I was not even going to ask him to lower the price.  I told him it was a very fair price.  He proceeded to tell me that everyone that was calling him about it, wanted to tear out the lift and make it into a cargo van.  He said..."That lift was put in for my daughter and she just passed away and I want it used for a child who needs it."  We talked awhile about his daughter and I made arrangements to make the three hour drive, with my dad, down to see it.  It was such a fair price, Tim and I, at that time, were able to get a loan from the bank with payments we could afford.  It is the nicest large vehicle we have ever owned.  It has never broke down or left me stranded, like our other run down buses and vans, we could afford, in the past.  This truly was a blessing from God and has been for all these years.

Antonio just got his new adult wheel chair.  It is just what he needed.  It took a long time and a fight with insurance to get.  Antonio is going to be 20 this year, so this is the size chair he will need the rest of his life.  The down side is... it does not fit safely in our current van.  The van we have now works very well for a small child and their small wheelchair because it only has a small place for a wheel chair.  The man that we bought the van from, had a large family and he had the lift put in himself, as a solution to his need.  He did not have the roof raise or the floor lowered for adult head room.  Sadly, his daughter was terminal and they knew it, so did what they needed for their daughter.  They put in the lift.  They also didn't remove the seat ahead of the wheel chair position (like it is normally done) because he had children he needed that extra seating for.
God knew we needed that too, so I believe God directed us to this van.  We would have had to be in a bus all these years.  There is no van that would have fit our sized family and Antonio, in his wheel chair but this one van... that this family had put together for there sweet daughter.  We so appreciated his kindness in selling it to us.  It has been such a blessing to us all these years.

But... with Antonio's new chair, it has been a struggle.  I can not get him in and out of the van myself.  I have to have adult help (Tim or William) and then one small child to hook the straps.  If they are not with me, I can not get Antonio anywhere alone anymore.  It takes two adults because we are back to lifting his chair, to shimmy it in.

In the above pictures, you can see that there is not much room for his wheel chair.

There is a jump seat next to where Antonio's chair goes, that we need to use when Tim is home and with us.  We used to be able to fold that down.  We still can but have to lift Antonio, in his chair, over, so it will have room to drop down.  A very difficult and unsafe feat.  He weighs 120 pounds plus his heavy wheel chair.

An adult has to let the lift down and a small child has to get in.

Once we get Antonio on the lift and raise it up...there is no head room to push him in because there is no raised roof.  Once the lift is up in the proper position to push him in, this is where his head comes to.  We have to tilt him back and push him in and then his feet hit the seat ahead of him and his chair is still hanging out and we can't close the door or fold the lift.
We have to move him an inch back and sit him up a hair and push him forward... back and forth several times while sitting him up a bit more and more till he is in the sitting position and then we still can't fold the lift.  We have to push him forward till his feet are under the seat ahead of him to get the few inches needed to fold the lift and shut the doors.
Once we have him in, we are exhausted but he looks like this.  Always the happy young man but his head is less than an inch from the ceiling.  Not safe at all.
Then there is this.  He is squished so tightly in there that we can not tie down his chair.  One of the middles has to climb around and under him, with their body doing contortions, to reach the straps and strap him down.  Those are Zeke's shoes in the below picture.  He gets in before we load Antonio, stands up tight against the wall and once Antonio is loaded, he bends all different ways around to reach and hook the tie downs. He then climbs over the seat to where his assigned seat is.  When we are ready to unload he climbs over the seat and back into that spot and undoes all the tie downs.  If it is rainy or muddy outside, he gets mud from Antonio's wheels and his shoes, all over himself and in the van, on the seats and such but it can't be helped.
Then there is the flip down seat.  If Tim is home and we want to go somewhere as a family or to an appointment far away, we have to all manually try to lift and shift Antonio in his chair, over inch by inch, till he is far enough away to drop this flip chair down so Carolyn can sit in it.
'

That's what we are facing right now to load and unload Antonio.  I am trying not to take him anywhere unless I absolutely have to because even though we can make him fit, it is not the safest or best for him.  Also, we are harming our bodies trying to lift and shift his chair around and shaking his new chair around a lot trying to get it to fit, which could bend or break his new chair over time. 
We got him in!  Thanks guys!

We have been looking at used mini buses.  To get one with air conditioning and that will be reliable for me and the children, they cost about $30,000-$35,000.   Our bank said they would give us a loan but because the ones we have found, in that price range, are older and have miles on them, they would only loan for two years.  Our monthly payment would be around 800 dollars a month.  We just don't have that.  Tim and I prayed about it and started a Gofundme account.  Our neighbor asked the local paper to do an article on us and last Wednesday, there was a very nice article put in about Antonio and our family.  It was very kind of our neighbor.  We found a place that had a good used mini bus in North Carolina that said they would give us $7000. trade in on our current van.  So that would help a lot in coming up with what we need.  Also, I feel good about it as they sell handicap vehicles and I know they will sell our grey van to a family that needs the lift, for someone in their family.  So it will still be used as the original father/owner wanted.

Please keep us in your prayers.  God is so good and His provision and timing are always perfect.

May God bless you and meet your needs daily...as He owns the cattle on a thousand hills and the wealth in every mine...May He be with you now and always.

Hebrews 13:21  Make you perfect in every good work to do his will, working in you that which is wellpleasing in his sight, through Jesus Christ; to whom be glory for ever and ever. Amen.



Blessings,

susan

http://www.gofundme.com/deng2g





 

 

Saturday, August 23, 2014

I Guess My Littles Are Now My Middles

Its always amazing to me how God forms families.  In my life, Stephen had me all to himself for nine years!

Then the children seemed to come to us, by God, in threes.  Children all close together in age.  As the next three were, William, Faith Anne and Antonio.  For two weeks every year William and Faith Anne were actually the same age.  Antonio is 17 months older than William.  If Faith Anne was alive today, those three would be:  Faith Anne (17), William (18) and Antonio (19) right now!  Faith Anne passed away, and in the mist of the terrible grief, several months later, Antonio came to live with us.   Sadly, Antonio never got to meet her and spend time with her.  

Then came the three youngest.  One right after the other, Carolyn, then Zeke and Elizabeth.  Those three little ones were intense in medical needs and behaviors.  They all kept me very busy.

We always called them "The Littles" and when calling them in from playing, we called, "Littles" and they all would look up and come running.

They were never lonely and as they grew had more and more in common.  They all played well together.

My three sweet babies. 

I enjoyed them so much and thought that they would be my last "group" of children to raise.

Even though they grew and grew, I guess I was in denial...I always looked at them as "My Littles".  My babies.

They always do everything together.

Even get into trouble together.

They do everything together intensely from playing to fighting but they stick together like glue and stand up for each other fiercely.

Sweet, silly, Littles.

 The Littles were always about the same height for years.  What blessings!

 Such happy times and sweet memories.

My dear ever growing Littles.

But now, since getting the toddlers and a baby.  I can see my Littles are no longer my Littles.
They are now my sweet Middles.

Thank you God for all the children you have greatly blessed us with.  For the pleasure and honor of entrusting us with raising and enjoying them.  For my grown adult son.  For my two young men that love you so much.  For my dear sweet daughter already with You.  For my wonderful middles, that always keep me on my toes and for my precious new foster Littles, that have filled my life to overflowing!

Exodus 15:2 The LORD is my strength and song, and he is become my salvation: he is my God, and I will prepare him an habitation; my father's God, and I will exalt him.

2 Samuel 22:50 Therefore I will give thanks to you, O LORD, among the heathen, and I will sing praises to your name.

Deuteronomy 10:21 He is your praise, and he is your God, that has done for you these great and terrible things, which your eyes have seen.

Saturday, August 16, 2014

Unraveling The Mystery Of A Special Needs Child

When God gives you a child, entrusts you with its well being and care, we do our very best to do what is best for them.  We learn their body language, their likes and dislikes.  We teach them, feed them, love them and help them grow.  But sometimes, if God blesses you with a child with a special need, all that is just not enough.  There is so much more.  A mystery that sometimes we have to fight to find the answers to.  These answers can help us give these children a better life.  Help us understand how to best nurture them and teach them.  Some answers, though we search fervently, we will never know.

We walked this harder road with children many, many times.  Working hard to find doctors that would do tests we felt we needed to have done.  Fighting to get funding for equipment we knew a child would do well with or needed that no insurance would pay for.  Praying like never before, that what we were told by doctors, would not be a bad as what they claimed.  Trusting in our most powerful and gracious God, to have mercy and heal our children, to relieve their times of suffering, to give them a good quality of life.  That no matter what, we pray our children would be saved and happy.

God has been so good.  So very, very good to me.  I thought He was done with me.  That He would not bless me with any more children.  That He had chosen to retire me from raising any more children.  It was a great struggle for years to find the next step in my life and to move on away from having more children.  I prayed and prayed to God about it daily and in February we were doubly blessed with our foster sons. "B" and "T". 
I was over joyed to say the least.  They were sent to us because other foster homes were afraid to take them because they were both hospitalized with staff infections.  We took them and though the road has been very hard at times, with their intense behavior issues.  They are both improving daily and have been such a blessing to us all.   On the hardest days I would remember the years of praying to God about having more children and know all is well and this is the will of God.  I love them both dearly.  We all do.  We can't imaging life without them.  They have had some mysteries to figure out and address.  Such as "T"s severe bowel issues.  After a lot of testing and trial and error, we have found he is not able to absorb fructose or lactose and can not consume dairy.  There is also a wheat sensitivity that was causing him health issues.  But all in all, these children have been and are, very typical aside from their behaviors from neglect and abuse.

But our sweet baby.  Baby "K".  She is the sweetest most laid back baby we have ever had.  When we were contacted to consider taking her, we were told she was born to a mother that used Meth heavily thru the whole pregnancy.  That she was born three weeks premature, had reflux, trouble nursing and that her eyes had strabismus. (where the eyes are not aligned properly and point in different directions)  Baby "K" 's eyes both point outward. 

When she came to us, she was four weeks old.  She had spent two weeks in hospital detoxing and two weeks in a short term foster placement before arriving here.  Oh, what a huge blessing she is.  The toddlers are exquisite and I enjoy them so much but baby 'K" is like frosting on the cake, straight from God himself. 
Pure sweetness but right from the start I could see some struggles for her.  I have tried to give her time, taking into account her being three weeks premature.  I have done therapy with her daily to try to help her and teach her things that should come naturally.  I have enjoyed every moment.

Now that she is 3 1/2 months old and she is not progressing naturally, these concerns need to be addressed and so we start the road of unraveling the mystery of her special need. 

The biggest concern at this point is that I do not think she can see well at all.  I know she can see light and dark but she can not track normal movement and does not make eye contact.  If she is very, very close to my face, like while I feed her her bottle and I move even closer, she looks at me sometimes.  She will track someone walking in front of our very bright front door.  She does smiles because we have all spent so many hours rubbing her face and playing with her but she only smiles when we touch her and play with her.  She did just start smiling recently, once in a while, at the sound of my voice when I speak to her.  If I just pick her up I startle her.  I have to tell her I am there before touching her or she startles.  My biggest prayer for her right now is that she is just late in developing these skills.  We have an ophthalmologist appointment for her on September 8th.  So we should know at that time how much she can see and what the issues might be.

I have had many babies over the years.  My lowest tone babies were Zeke and Elizabeth.  Eventually, they were both diagnosed with Hypotonic Cerebral Palsy.(low tone or floppy tone CP)  Baby "K" has even lower tone than they did at this age.  Thru a lot of prayer, she is now using her legs a little but her arms very little still.  Every day, all day long, I put toys in her hands and bring her hands up together and "hand over hand" teach her to play.  I hang noisy toys over her feet and she will now kick at them to make noise.  I hang them over her hands and arms and I am still having to initiate her to make them move.  She can hold up her head now a bit after weeks of practice but is not even trying to roll over.  I am working with her daily patterning her on how to do it.  I daily work on all of these things with her trying to teach her to move her body.  God is so good.  She is just starting to bring her hands to her mouth and chew/suck her hands once in a while.  Yippee!

She is still having issues with reflux, it happens many times, all day long, that she will have coughing spells from reflux.  About once every other day, she will projectile vomit even out her nose and we have to scurry to clear her airway with a bulb syringe.  The doctors have her on Xantac but it does not seem to be helping and when we tried to thicken her formula to the thickness they wanted it was dangerous.  It takes way to long to clean her airway with such a thick mix of formula and cereal.  It is way to thick for her to clear herself.  So it is such a balancing act with her feeds.  Her swallow study was not done properly (I could write a whole angry post about that!)  It was done by a hospital that had never done an infant swallow study before.  The report to the doctor actually said that the patient was able to swallow the barium tablet with no issues????  A three month old that was scanned while drinking formula???  Anyways, the whole thing was not done properly and a waste of time.  I guess when you walk in and they ask you if you have ever had one done on an infant before and you say yes and they ask you how to do it... you know things are not going to be done right!

None the less, many appointments are going to begin once again, to try to find out what is going on, so we can best help our sweet little girl.  She will be having an MRI soon, as well as being refereed to a neurologist and geneticist.  We already had our Occupational Therapy eval and Physical Therapy eval and she easily qualified for both.  Her speech eval will be in the next few weeks. 

Were these things caused by heavy meth use?  Are they a syndrome?  Are they from a birth injury?  Are they just how she was made?  We may never know... but for right now all I can say is... we all love her so very, very, much.  We will thoroughly enjoy her being here for as long as she remains in foster care.   She is the frosting on the cake of life right now and one of my lifes greatest blessings.  We will be praying fervently over her and I have already seen God working in her little body!  Glory to God!   May her testimony be miraculous!  I can not wait to see it unfold!

May the Lord God in heaven, be with the children of the world, holding them in the palm of His mighty hand, in all they go thru and endure.

Matthew 19:14  But Jesus said, Suffer little children, and forbid them not, to come unto me: for of such is the kingdom of heaven.



Blessings,

susan 





 

Sunday, August 3, 2014

A Very Special Girly Lunch!

I am not a very girly girl.  I am practical and wear  jeans and a comfortable cotton t-shirt most days.  I rarely wear a dress and only if I have to.  I don't color or fix my hair.  I don't own hair gel or hair spray. I don't own makeup.  With me what you see is what you get.  I also don't often think of doing anything very feminine with my daughters...who do happen to like to curl and fix their hair.  Like to dress up and love to wear jewelry.

My sister has two grown sons.  She has run the gamut of base ball games, band practices, legos and everything boy.  While growing up and even now...my sister is a girly girl.  Just sayin, she dresses amazing.  She recently kept my niece "A" for a few days and called asking to invite my girls out, to go with them, for a girly lunch at Sweet Tree's Bakery and Cafe.  My girls were beyond excited!
They primped and giggled, asking each others opinion on what dress and jewelry to wear and how to do their hair.  They got all dressed up in their girly best and enjoyed being spoiled to a lovely lunch out all together!  The atmosphere is very feminine and special.

Even the bathroom is girly special.

They ate in girly style!

Then chose a special dessert to bring home.


Thank you my sister for taking the time to make a happy special memory for my girls.  These are the types of things I would never think of doing myself with them.  You always have the best, special ideas! 

These cousins will have this sweet memory forever!  What a gift!

Matthew 5:16  Let your light so shine before men, that they may see your good works, and glorify your Father which is in heaven.


Blessings,
susan







Saturday, July 26, 2014

My Quiet Little Man

Zeke is probably the quietest child in my home.  He does not talk much and when he speaks, he normally speaks very quietly.  If you don't catch what he says the first time, he often will not repeat himself.  He is quiet, calm, and non-obtrusive and only gets upset if he gets into dairy, wheat or if we try to force him out of his routine or comfort zone.   As with most children that have autism, we had many years of hard times and therapy.  He was not always as calm and easy as he is now but has been now for many years.  When he does get into trouble, I have to gently discipline him or he will weep for literally hours.  Quietly and uncontrollably.  Non-consoleably.   A small lecture, in a low and quiet tone, is usually sufficient as a reprimand. 
This is the flacid look Zeke has all the time on his face whether he is having a good time or not.  Whether he is happy or not.  I have to ask him to look at me and smile to take a picture and end up with five pictures like this or with him smiling and looking another direction before having a great one where he is both making eye contact and with a smile.  Believe it or not, in the above picture he is happy and relaxed for him.  He fidgets and has facial ticks if he is bothered or upset inside.

The way autism effects Zeke, seems to make him VERY routine oriented.  For him to function daily, without melt downs and anxiety, we try to keep his portion of life as non-changing as possible.  I know it sounds like we cater to him and his whims but trust me, it just makes our life so much easier and his too.  Just a pretty calm, happy life for us all, with him, if we avoid the triggers that send him over the edge emotionally.  I could not imagine having seams of clothing bothering me so badly that I can not concentrate or soft lullaby music grating on nerves as badly as it does for him.  I do very few blog posts on him, as he does the same things, in the same order, pretty much day in and day out.  He gets up and does his day according to his chart we have hung on a wall for him.  He quietly does his school program in the morning/early after noon and then in his free time he disappears into his train/lego area and makes little to no noise.  He likes making videos of his toys and narrates them for us.  He likes spending time with his pets.  If we have to go somewhere he plays on his Kindle.  All of the other children in the home have outgrown him, as far as playing with him.  He still loves Bob the Builder, Blues Clues and playing with Thomas the Tank Engine wooden railway system.  All of the other children have matured to the point they don't actually play anymore.  BUT!  I have seen him starting to play with "B" our 2 year old foster son and they seem to like the same things and play on the same level, so hopefully they will continue in this area and have fun with each other.  With Zeke, things like this (relationships) are slow moving.

The other children all have things going on that I write about.  The girls do ballet.  Carolyn takes riding lessons.  William has several things he is involved with like archery, working on his VWbug or his stop animation.  By the way, William started a new Youtube channel.  It is still in the making and called Lego Bro 4 Studio, if you want to stop by and check out the newest videos he is creating and adding from time to time.  Antonio is usually my second quietest and least involved with activities.  He does not like to go outside much as the heat makes him vomit and cold makes his Cerebral Palsy extra tight and painful.  So we have to carefully plan out the trips or places we take him.

Recently, I realized that Zeke has been happily stuck in his quiet little world for quite some time.  Tim and I talked a lot about what we could do for him that would make a happy memory and make him feel special.  He usually only smiles if I ask him to, so it is hard to tell what makes him really happy.  Trust me, he loudly lets us know what does not make him happy!

What we decided to do was plan a special weekend with just him and his dad.  We saved and planned for two months.  It was a lot of fun and Zeke knew nothing of it.  We did not want to cause him any anxiety so kept it a secret, even from the other children.   We even packed his things the night before without him knowing.

Last Saturday morning Tim woke Zeke up and told him they were going to spend some special time together and they left. 

They went out for breakfast on their way out of town. 
I think this picture is from the next mornings breakfast...Tim took them all and sent them to me.

There destination was the Tennessee Railway.  Zeke loves trains. 

They spent the morning looking at and walking thru all the trains and railway cars. 



Then they went on a long train ride.

They even ate in the dinning car. 

Tim could tell Zeke was really enjoying himself as he was so calm and interested in looking at and touching every detail.  The train stopped at one place and they had a look around.
Praise God it was a good plan and they had a really great time. 

That evening they ate at one of Tim's and Williams favorite restaurants in the area,  Ribs and Loins.  They went bowling and then spent the night in a hotel.  

The next day I got all the barn work done and the whole rest of our crew around, stopped and picked up Stephen on the way and met Tim and Zeke at the Tennessee Aquarium. 
For those readers and family that say they would like to see me on the blog once in a while, here is proof I was there.  I carried baby "K" for the day.

A friend had donated some money toward us taking the children to the Aquarium for a visit.  Thank you "L.L."  We all had a wonderful time. 

We had not been in a long time. 

Probably about five or six years.  Long enough that Elizabeth does not remember ever going.
So it was a very nice time that everyone enjoyed so much.
It was also so nice to be all together with Stephen for the day as well.  A special treat.  Believe it or not it was cheaper for us to get the family membership than to pay for each individual person in our family for the day.  So now if we come up with the gas money at some point we can go again sometime.

Zeke my quiet little man seemed to have a wonderful weekend.  We love him so much and never want him to feel over looked.  He is a huge and special person in our life.  A wonderful son.
 

Psalm 95: 2-3  Let us come before him with thanksgiving and extol him with music and song.  For the LORD is the great God, the great King above all gods.


Blessings,
susan