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Journey Journal Part Six

by | Dec 11, 2013 |

This is the sixth installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Click here to start reading Journal from the beginning. Here is what we said:

DAY FOUR – September 28, 2001 – (Robin)

Today, I felt almost normal.  There is no more shock and we have tried to live normal lives.  It is amazing that we are offering support to others.  It is an honor. God deserves all the honor and glory.

We have only begun. This is not a sprint, but a series of marathons.  We are getting our second wind in 1st mile of the first marathon.

God will be with us every step of the way.  I have never felt so close to God in my life and I have never felt so close to family and friends.  I have never needed other people in my life.  However, now when people say, “If you need anything, let us know” I take them very serious.

I am excited about what I am about to learn from God.  We have only touched the tip of the iceberg!

2013 Commentary
I welcome you comments on these posts.  Honestly, this process of reading the old journal entries has been a weird experience for me.  Weird in a good way.  Honestly, I had forgotten a lot of the emotion and things we learned along the way.  This post was dead on. We have run a lot.  Uphill journeys and a ton of beautiful experiences have characterized our path. We had no idea what would happen but we plowed through with our Trust in God.  Still plowing!!

Your thoughts??

Read the next Installment here

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Journey Journal Part Five

by | Dec 10, 2013 | , ,

This is the fifth installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Click here to start reading Journal from the beginning. Here is what we said:

DAY FOUR – September 28, 2001 – (Erica)

A Prayer…

Trying to take it all in.

That would basically sum up what I am doing.  Yesterday was the hardest day. The shock started wearing off.  Denise (Phillips) called and talked to me to see how I was doing.  It was so good to just talk to someone.  She said that we have been given the peace that passes all understanding.  It is so true.

You have given us such peace in what would otherwise be a traumatic situation.  I thank you, Lord, for your strength and I believe whole heartedly that this child and this situation is going to bring you awesome glory.  Thank you for allowing us to be a part of that.

It is so hard and so easy at the same time.  Please continue to draw Robin and I closer to you and closer to each other; so that we can find our refuge and strength solely in you.  Let us see this through spiritual eyes and not the eyes of man.

Thank you for sending us such abundant support through family and friends.  Thank you for a healthy beautiful baby girl.

<3 E.

2013 Commentary
Unfortunately, this is the last installment from Erica for quite a while.  She wrote a few posts and then didn’t write again until mid-October (a month later).  I (robin) continued writing and will post those in coming days.  God answered her prayers about her marriage. He used this situation to bring our relationship closely together.  The divorce rate for Special Needs parents is a lot higher than for parents of typical kids.  We give God the honor for what He continues to do in our life and marriage.

Read the next Installment

Journey Journal Part Four

by | Dec 9, 2013 |

This is the fourth installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Click here to start reading Journal from the beginning. Here is what we said:

DAY THREE – September 27, 2001 – (Robin)

The thoughts have slowed way down.  As we educate ourself on the situation we answer a lot of questions in our mind.  However, today it has taken the worst toll.

The heaviness lingers in the background.  It is not literal thoughts that haunt us. Actually, nothing haunts us or scares us, but the attack against us is almost subliminal.  A weight we feel but don’t necessarily think about.

We are surrounded by incredible people that are ministering to us.  Phillips, Ragsdales, Steeles, Lowerys, Zwernamans, Ross, countless @ church, Hineslys.

God will get the victory.  Psalm 107 ministered to me a lot.  We serve Jehova Rapha, Jirah, Shamma. Provider, healer, more than enough!!

==

Commentary from 2013 

Going back and reading our posts blows my mind! I forgot how much God provided for us and how his strength made a way. It clearly shows how He is always enough (even when you think you can’t make it). It also shows how easy it is to forget what He has done. It has been so refreshing to dig up these journals.
However, a few days from now, I will posting one that is difficult for me to read. It shows the ups and downs of our emotions and the spiritual growth we have experienced.

Thinking back over your life, have you experienced the power of God show up in a comforting way? 

How important is it for you to remember these times and praise God for them?

Read the next Installment 

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Psalm 107

1 Give thanks to the Lord, for he is good!
His faithful love endures forever.
2 Has the Lord redeemed you? Then speak out!
Tell others he has redeemed you from your enemies.
3 For he has gathered the exiles from many lands,
from east and west,
from north and south.
4 Some wandered in the wilderness,
lost and homeless.
5 Hungry and thirsty,
they nearly died.
6 “Lord, help!” they cried in their trouble,
and he rescued them from their distress.
7 He led them straight to safety,
to a city where they could live.
8 Let them praise the Lord for his great love
and for the wonderful things he has done for them.
9 For he satisfies the thirsty
and fills the hungry with good things.
10 Some sat in darkness and deepest gloom,
imprisoned in iron chains of misery.
11 They rebelled against the words of God,
scorning the counsel of the Most High.
12 That is why he broke them with hard labor;
they fell, and no one was there to help them.
13 “Lord, help!” they cried in their trouble,
and he saved them from their distress.
14 He led them from the darkness and deepest gloom;
he snapped their chains.
15 Let them praise the Lord for his great love
and for the wonderful things he has done for them.
16 For he broke down their prison gates of bronze;
he cut apart their bars of iron.
17 Some were fools; they rebelled
and suffered for their sins.
18 They couldn’t stand the thought of food,
and they were knocking on death’s door.
19 “Lord, help!” they cried in their trouble,
and he saved them from their distress.
20 He sent out his word and healed them,
snatching them from the door of death.
21 Let them praise the Lord for his great love
and for the wonderful things he has done for them.
22 Let them offer sacrifices of thanksgiving
and sing joyfully about his glorious acts.
23 Some went off to sea in ships,
plying the trade routes of the world.
24 They, too, observed the Lord’s power in action,
his impressive works on the deepest seas.
25 He spoke, and the winds rose,
stirring up the waves.
26 Their ships were tossed to the heavens
and plunged again to the depths;
the sailors cringed in terror.
27 They reeled and staggered like drunkards
and were at their wits’ end.
28 “Lord, help!” they cried in their trouble,
and he saved them from their distress.
29 He calmed the storm to a whisper
and stilled the waves.
30 What a blessing was that stillness
as he brought them safely into harbor!
31 Let them praise the Lord for his great love
and for the wonderful things he has done for them.
32 Let them exalt him publicly before the congregation
and before the leaders of the nation.
33 He changes rivers into deserts,
and springs of water into dry, thirsty land.
34 He turns the fruitful land into salty wastelands,
because of the wickedness of those who live there.
35 But he also turns deserts into pools of water,
the dry land into springs of water.
36 He brings the hungry to settle there
and to build their cities.
37 They sow their fields, plant their vineyards,
and harvest their bumper crops.
38 How he blesses them!
They raise large families there,
and their herds of livestock increase.
39 When they decrease in number and become impoverished
through oppression, trouble, and sorrow,
40 the Lord pours contempt on their princes,
causing them to wander in trackless wastelands.
41 But he rescues the poor from trouble
and increases their families like flocks of sheep.
42 The godly will see these things and be glad,
while the wicked are struck silent.
43 Those who are wise will take all this to heart;
they will see in our history the faithful love of the Lord.

Journey Journal Part Three

by | Dec 7, 2013 |

This is the third installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  To start at the beginning, click here. Here is what we said on day 2:

DAY TWO – September 26, 2001 – (Robin)

Thousands of thoughts still go through our heads.  However, we received more knowledge on the diagnosis.  We visited a genetic counselor and she gave us positive news on the situation. (There is a best case scenario).

However, we are not putting our trust in positive news. This is hard to do. But, if we begin to rely on news, then bad news will kill our faith.  Actually, there are no facts, yet and no way to determine the severity of the situation.  We will begin to rely on good news when they are fact.  Even though we have been positive, it is always in the back of your mind like a mental weight.  Everyone has been so kind to us.  I called Pastor Mark in Taos.  He is “gathering the troops” in NM!

I feel like praising. This is the jail that Paul was in.

It is time to sing.

Read the Next Day

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Journey Journal Part Two

by | Dec 6, 2013 | ,

This is the second installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Click here to start reading Journal from the beginning. Here is what we said:

DAY TWO – September 26, 2001 – (Erica)

A Prayer…

Yesterday was one of the most shocking days and trying days I have faced.  The doctors diagnosed this beautiful baby you have given us with Hydrocephalus.  I am, of course, completely broken hearted.  I feel like every hope I had and every plan I had has been re-directed, but at the same time I feel so much peace from you.  There is so much to think about.

How do you keep pressing on and…well…I know, because you are making it so clear.  We just need to trust you.

Thank you for being my complete strength.  I turn all of my cares over to you. Thank you for giving me such a strong and wonderful husband that has looked to you for the answer from the minute we began this journey.

When we were in the doctors office, we both started hearing the song, “Whose report shall you believe?”  It was so encouraging.  Thank you Lord for your perfect grace and comfort.

I <3 U.

Read the Next Day

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Journey Journal Part One

by | Dec 5, 2013 |

This is the first installment in a series of posts straight from our journal (handwritten).  When we first received the difficult diagnosis for our daughter (still in the womb), we immediately started journaling.  Here is what we said:

DAY ONE – September 25, 2001 – (Robin)

Today was much anticipated. The day of the big sonogram.  However, the news was bad. The doctor said our baby girl had little hope of a normal life and a large chance that she would not make it at all.  Thousands of thoughts have flooded our minds. it is amazing how fast a brain can process thoughts.  Positive, negative, middle.  Much of the time we can’t tell if the thoughts we have are bad or not.

We are confused.

However, we have peace.

Never in my life have I had so much proof that I believe in God. When it came down to it and life was in a crunch, I told God that I believed in Him. Whether our baby is totally healthy or dies early, I will believe in Him. I will trust Him and I will seek Him and not a miracle.

I won’t lose my smile.

Read the Next Installment

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Kennady’s Story Keeps Changing Lives

by | Nov 6, 2013 |

Erica and I were given the incredible opportunity to speak to several classes at a local high school (Lehman High).  Betsy Slemmons teaches several different courses at Lehman and was looking for parents to share their experiences with her childhood development classes.  Unfortunately, the day we were to speak, Erica had to go to a long birth and missed the sessions.

It has been almost 20 years since I graduated from high school and I still get nervous walking the halls.

I spoke to 3 different classes throughout the day.  I told our story and tried to cover as many bases as I could.  They asked some great questions too.  We talked about her birth and diagnosis. We talked about the doctor’s proclamation of ‘no meaning‘ (which really fired them up).  We covered our difficulties, struggles, laughs, insurance, blessings, Kennady’s love for rap music, and many other topics in between.

I encouraged them to be an advocate for those who have no voice.  Speak up for those who can’t speak. Don’t laugh at ‘short bus’ jokes or drop the ‘r’ word.  I left encouraged, thinking that we had connected on some deep levels.

Then, I received this letter in the mail. WOW.  It seems only God can motivated people to give up their possessions, and He did.  Love is strong and makes a difference.

 

slemmons

A Kennady Hug

by | Sep 27, 2013 |

A little background before I get to the HUG part:

When it is late at night and I have had a rough day, I go into Kennady’s room.  She is laying there watching TV. Giggling and rolling around.  The lights are dim and the atmosphere is calming.  No matter what I have gone through that day or what struggles I am concerned about in the future, Kennady’s reality is much worse. However, her demeanor is so comforting.

Throughout the day, she has been unable to tell anyone what she wants.  She has been unable to go where she wants…when she wants.  We give her simple choices by holding up two objects and she often picks what she wants by gazing at one longer than the other.  However, we are unable to know what choices she wants to make.  I can’t imagine how frustrating it must be for her to want something and be unable to tell us.  Sometimes she is in pain and we have to start a long process of elimination.  For example, if her leg is hurting and she is crying we will start working on other parts of her body.  We might give up before we reach her leg and alleviate the pain.  Kennady is without most of the “life incentives” we have.  No future of an education, career, a boyfriend/husband, driving a car, playing sports, etc.  I could go on and on about how her life is a struggle and difficult, but I think most people get the picture.

When considering my day and the concerns that I have, they seem minor when I go into Kennady’s room.  They seem to fall off my shoulders when I walk through the door.  What little might still be clinging to me melts as I wrap my arms around her and she starts to hold me tight.  She starts to comfort me by nuzzling her nose and mouth into my neck as to say, “Don’t worry, Dad.  I know what it is like to struggle through the day.  Everything is going to be ok.”

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She is ok with life.  She keeps smiling in the face of adversity. She seems to have mastered Philippians 4:11-13

I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength.

She teaches her father/pastor a spiritual lesson.

Thank you, Jesus for giving me Kennady.  I can’t imagine the Love of God that she must feel inside. She is so content.  The good of God strongly defeats the pain and suffering of the world.  The evidence of God: the Fruit of the Spirit is always in season in her life!  What an unlikely place to hear, feel, and experience the power of God!  In our weakness, he is strong!

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A teensy weensy update, on the past 8 weeks

by | Aug 20, 2013 | ,

Robin and I haven’t posted since Kennady got home from the hospital during her last stay because the pace of life right now, feels similar to the pace of an avalanche at your back while skiing straight down a hill.

Kennady made it home and recovered great after her baclofen pump was implanted.

Approximately 1 month out from the surgery, she got an infection in her site which ultimately resolved on it’s own.

10 days ago (2 weeks after the last infection healed up) Kennady’s incision on her back, developed a red raised spot on it.  This grew over the week and then the redness spread to the front of her belly and incisions.

I took her in to the E.R. on Saturday knowing that we were most likely not leaving until we got some antibiotics, at a minimum.

Low and behold, she was admitted.

The doctor came in the following morning (from vacation) to operate on her wounds.

The goal was to clean the infection out and then make a plan.

Unfortunately, when the doctor went in, the infection was concerning enough, combined with a positive culture for Staph, that she had to have her entire baclofen pump and catheter removed.

We are extremely disappointed.  Disappointed doesn’t even seem to fit.

There really aren’t words right now.  It feels like such a long journey to end up in this place.

Today she had a picc line placed so that she could get antibiotics for the next 2+ weeks, as she is healing.

The doctor told us that Kennady will need to heal from this surgery and infection and that in a few months we could possibly put the pump back in.

There is so much to process right now,  we are just being here with Kennady and spending time with our boys.

I will be leaving to go take my final exams on Wednesday evening, and will return on Saturday.  This leaves Robin alone with the boys and a girl in the hospital.

Fortunately, we have lots of wonderful friends and family on standby to help.

We are in the process of trying to get back home with our home health care company.  This way, we can avoid the extended stay at the hospital and be in the comfort of our home

We don’t have a solid plan yet, but please pray that it will be clear each step that we take.

Thank you for all of your love, prayers and support!

MadeMeaningful Song!

by | Jul 4, 2013 |

Last year, one of our friends wrote a song for Kennady! Kaley Switzer of Round Rock, Texas was 14 years old when she wrote and recorded this demo.

Kaley has overcome huge hurdles of her own. Check out her story here.

Made Meaningful

Written for Kennedy Steele by Kaley Switzer

Why does the world keep on askin’

Oh why does have to be

Why does the world look at me differently

But in your eyes, you see perfect me

 

When I think I can’t

You tell me I can

I try to be someone different

But you still love me for who I am

I’ve been made meaningful

You make things beautiful

I’ve been made meaningful

All things wonderful

I know you never make mistakes

Your perfection is supreme

You made us all for a purpose

Your creator of all dreams

I’ve been made meaningful

You make things beautiful

I’ve been made meaningful

All things wonderful

Jesus loves the little children

All the children of the world

God loves the little children

All the children of the world

I’ve been made meaningful

You make things beautiful

I’ve been made meaningful

All things wonderful

 

 

Another Video of Kaley!

 

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