“But rains pour down upon us, storm clouds darken the skies and we get lost in the storm. Have you been there? Wandering in the darkness, crying out only to be greeted with utter silence?"

~ Lesley Hitchens ~



"God puts rainbows in the clouds so that each of us in the dreariest and most dreaded moments can see a possibility of hope.”

~ Maya Angelou ~

Friday, July 8, 2016

Dark days...

My thoughts are a lot today. I'm sad and disappointed at how this country is headed toward, I saw the other night of another chiarian died due to the chiari but the catalyst being shunt failure... My heart is heavy.... 

Abraham Lincoln said: "America will never be destroyed from the outside. If we falter and lose our freedoms, it will be because we destroyed ourselves.”


Many of you have heard but there was an ambush in Dallas last night and 11 cops and 1 civilian was hit. Violence only begets violence. Shooting at cops in is not called for. It was a peaceful protest and even the Dallas PD were peaceful with those there till gunmen had to ruin it. This country has some really big problems that nobody wants to deal with and the way we are headed, it's only going to get worse.....

I am 34 years old and this is definitely not the country I grew up in......

It's also a sad day when people are saying that people deserved this or that.... Even more pathetic when those who once were in high positions in our country call for war within our own country and call for assassinations.... (here)


"Violence never brings permanent peace. It solves no social problem: it merely creates new and more complicated ones. Violence is impractical because it is a descending spiral ending in destruction for all. It is immoral because it seeks to humiliate the opponent rather than win his understanding: it seeks to annihilate rather than concert. Violence is immoral because it thrives on hatred rather than love. It destroys community and makes brotherhood impossible. It leaves society in monologue rather than dialogue. Violence ends up defeating itself. It creates bitterness in the survivors and brutality in the destroyers." 

~ Martin Luther King, Jr. ~


I heard another Christian say the other day that what happened in Orlando, they asked for because they were gay. Then yesterday I heard someone else say that this country is getting everything it asked for because we are so sinful. While I can't dispute that God does judge nations for what they do,  I do have a few things on my heart with that...... Please read what I have to say. 

Back in the time of Jesus, the Samaritan people were the "scum of the Earth" to the Jews. The Samaritan people were half-Jewish. That means one parent was Jewish and the other parent was a foreigner. Because they were half-Jewish, Samaritans believed only part of the Jewish religion. The Jews believed the Samaritans were “unclean” in God’s eyes. Therefore, most Jews would never travel through Samaria. They would travel way out of their way to avoid getting near a Samaritan person. Yet what did Jesus do? Did Jesus totally avoid her like the plague because she was "Not one of the Jews?" 

NO! 

He talked to her! He asked for water. Not only was Jesus talking to a Samaritan but a woman Samaritan! See here!  Jesus didn't stop there now did he? He interacted with the lepers, healed them and talked with and saved many other "horrible" sinners. 

Our times today in reality are really no different. We have TV, radio and social media to spread news of affairs all over the world. Much of what is going on today I think is in part of because we hear of it so often in the media. Yet over time we harden our hearts to it. We figure that this or that happened because of guns, racism, sin, gays, etc. 

GOD SEES SIN AS EQUAL TO ALL! A murderer is no worse in God's eyes than a little white lie! 

What we do in life has consequences, we all know that. Unless you are Hillary Clinton but anyway...... Everything we do has consequences, good or bad. Life is full of choices that we have to make. Sometimes we have time, sometimes they are made in split seconds. Yet no matter what, there is a consequence for it. 

Yet does that mean that Jesus can't save the murderer because of the crime he did or Jesus can't forgive the prostitute because of how many men a woman has been with? 

No!

Forgiveness isn't separated by color, gender, class, country or anything else. You either accept or you do not. 

Yes, I am a Christian woman and I am sorry that many of our fellow Christians judge so much. They often forget that they too sin and that no one sin is worse from another in the eyes of God. 

Just over three years ago I remember writing something that I feel the need to share at this point. Something for all of us to remember. 

"I would love to share with you something near and dear to me. I am a Christian. your first thought to that could be either that I tend to be compassionate or I'm one of those 'judgmental, holier then thou' types. All I am is a simple human being who was saved by God's grace through His Son, Jesus Christ. So what is the point of reading this you ask? Because I want to share something. Please read all of this then think on it. 

We are all human, you know that. I make mistakes just like everyone else. I go to church to grow spiritually and to be with fellow Christians like me. I read my Bible to learn more about God and to gain more wisdom in my spiritual walk and growth. I will tell you though some days it's really hard to be a Christian. I mess up for one. I think and say things I shouldn't. We all do. That's where God's forgiveness comes in. I have many friends that are not Christian. I share my faith but I don't judge them. Ultimately it is their decision as to what they want to chose to do. My job is to still love them. I know why many of them are not Christian as well and that is what I want to speak on. First of all, we can't put our faith in humanity, only in God. If we put our faith into humanity, we will always see failure and despair. No denying that. Second of all, we can't please everyone. No matter what any of us do, someone somewhere will have something negative to say or think about it. What I want to speak on though is what MY Bible says about loving others and also judging others. If those who spent so much time pulling specks out of others' eyes, and instead shared the love that Christ shared, this world would be so much a better place. What verse am I talking about you ask? 

"Do not judge so that you will not be judged. "For in the way you judge, you will be judged; and by your standard of measure, it will be measured to you. "Why do you look at the speck that is in your brother's eye, but do not notice the log that is in your own eye? "Or how can you say to your brother, 'Let me take the speck out of your eye,' and behold, the log is in your own eye? "You hypocrite, first take the log out of your own eye, and then you will see clearly to take the speck out of your brother's eye. (Matthew 7:1-5) 
Personal judgments is what is talked about here. Like you telling someone that they don't belong in church and or are doomed to hell because of something they said or did. Matthew 23 also talks about the religious leaders who believed they were better then everyone else. "Woe to you, scribes and Pharisees, hypocrites! For you clean the outside of the cup and of the dish, but inside they are full of robbery and self-indulgence. You blind Pharisee, first clean the inside of the cup and of the dish, so that the outside of it may become clean also. Woe to you, scribes and Pharisees, hypocrites! For you are like whitewashed tombs which on the outside appear beautiful, but inside they are full of dead men's bones and all uncleanness. So you, too, outwardly appear righteous to men, but inwardly you are full of hypocrisy and lawlessness..." (Matthew 23:25-28)

The words of Christ here were strong words but they were aimed at those who thought and or believed they were superior to others around them. They were better then everyone else. In John chapter eight, Jesus strongly had words to say about that. The story in there was about a woman who was an adulteress. The religious leaders of that day were trying to stone her. Jesus said to them,  "He who is without sin among you, let him be the first to throw a stone at her." Again, trying to make a point about personal judgments. Jesus' major concern is that people do not make quick, unproven judgments from what they guess might have happened. Or a biased interpretation of it. Many people (both Christians and non-Christians) tend to fall into this kind of judgment problem, if they are not careful to check the facts carefully. The fault in this is how can we who are sinful set higher standards than a totally holy and righteous God?


What about righteous judgment? What is that? Is there a time to judge others? 

In Matthew 7:2-5, Jesus warns against judging someone else for his sin when you yourself are sinning even worse. That is the kind of judging Jesus commanded us not to do. If a believer sees another believer sinning, it is his Christian duty to lovingly and respectfully confront the person with his sin (Matthew 18:15-17). This is not judging, but rather pointing out the truth in hope—and with the ultimate goal—of bringing repentance in the other person (James 5:20) and restoration to the fellowship. We are to speak the truth in love (Ephesians 4:15). We are to proclaim what God's Word says about sin. 2 Timothy 4:2 instructs us, "Preach the Word; be prepared in season and out of season; correct, rebuke and encourage — with great patience and careful instruction." We are to "judge" sin, but always with the goal of presenting the solution for sin and its consequences—the Lord Jesus Christ (John 14:6).

As to the differences in the types of judgment, people have a problem with that. We are human, it will happen. One of the things that happens within churches though unfortunately is that people sometimes do get on a high horse and they think they are judging someone in a righteous way when in fact, it's the exact opposite. Worse, they are sinning themselves but are quick to point out where everyone else is but won't do anything about their own. It's like saying to someone out loud, public, social media, whatever, "You said a bad word so you really shouldn't do that." To, someone stating a thought about something and then they get bashed for it when yet the person doing the bashing does the same thing. Or even worse Christians telling other Christians, "I love you BUT YOU are in the wrong here." Many judge without knowing the whole story first. So many are quick to judge before knowing the whole story if any of it, many are not tactful, proper or even doing it privately. It at best just embarrasses the other person and at worst, turns them from their faith. This is where people get turned off by Christians. I have also seen some Christians walk away from a church over people within the church being like that. Huge difference in truly going to someone privately out of love and concern and just totally condemning them as if they are a worm on the ground that you are walking on and that worm is only worth stepping on. Which way do you think Christ would want us to be my brothers and sisters? We all have been judged, plain and simple. However, before you judge someone for something, think two things: Is how I'm going to go about this the way I would want it done to me? And most importantly: Is this the way Jesus would want me to do it?

Think about what and how you say something before you say it. You can never take back words. A person can forgive you for what you say but they never forget it nor will your relationship with them be the same again. However even we can work on that. We can by remembering that when God forgave us, our sins were as far from the east as it is to the west. He doesn’t remember them. We may have a hard time with that but something still to strive for. We can also strive to be that way for others. Forgiving, Merciful, Compassionate and have Grace. 

As mentioned as step 12 in Celebrate Recovery, we are to restore people gently. "Having had a spiritual experience as the result of these steps, we try to carry this message to others and to practice these principles in all our affairs. Brothers, if someone is caught in a sin, you who are spiritual should restore him gently. But watch yourself, or you also may be tempted. (Galatians 6:1)"

So what does all of this have to do with all of the violence we are facing? 

We live in a sinful and dark world..... Yet all of us jumping to conclusions and judging whites, blacks, cops, civilians, military, Muslims, Mexicans, etc isn't going to help. What will help is praying, doing your part to help others and be a comfort to others. Keep your head on straight and don't judge things by just what the media or another human mouth reports. Find out ALL of the facts, stories, evidence THEN come to a conclusion and THEN see what YOU can do to HELP the situations out there. 

THAT is how we help others. 

As Christians we are called to be ambassadors of Christ. God is LOVE. I pray we don't allow the enemy to use us to spread anger and hatred.

Galatians 5:19-26 NIV
The acts of the flesh are obvious: sexual immorality, impurity and debauchery; idolatry and witchcraft; hatred, discord, jealousy, fits of rage, selfish ambition, dissensions, factions and envy; drunkenness, orgies, and the like. I warn you, as I did before, that those who live like this will not inherit the kingdom of God.

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law. Those who belong to Christ Jesus have crucified the flesh with its passions and desires. Since we live by the Spirit, let us keep in step with the Spirit. Let us not become conceited, provoking and envying each other.


1 John 4:7-8 Dear friends, let us continue to love one another, for love comes from God. Anyone who loves is a child of God and knows God. But anyone who does not love does not know God, for God is love.
The Word never says to love only those that are without sin! It simply says to Love and then we will know that we are His!

My thoughts and prayers are with ALL the families of ALL the victims of the recent shootings; both the civilian families and the families and friends of law enforcement hurt or killed in last night's Dallas massacre.
This country honestly IS divided. Blacks (some) do feel singled out. Cops (some) do feel singled out. It's not all blacks, not all whites, and not all cops. It's honestly not all Muslims either. If you want the killings to stop, the very first thing you've got to do is stop the generalizing and stereotyping for the sake of headlines. (Most of the words here were taken from Tommy Jordan)

This country needs MLK back with his words of wisdom in a time like this..... Now, the question for all of you is this: 

Are we as a nation going to keep going the way we are, spewing hate, judgment and condemnation or are we going to unite and fight? Are we going to stand together of all colors and pray for each other no matter one's station, color, gender or anything else?

When we do that, I think we will see revival. 



"Like many of you, my heart is deeply grieved at the violence which is occurring in our country. In particular I am saddened by the racial tension which is a part of the most recent national stories.
This post is likely to bother and perhaps even anger some of the people with whom I am connected on various social media platforms and I am sorry for that because it is my sincere intention to bring words of love, encouragement and comfort. However, I feel compelled to express these thoughts, nevertheless.
I honestly do not believe there is a political solution to the issues of hatred, violence and racial discord. It is not that political action is of no value or that it is completely inconsequential. I am simply suggesting that political solutions are, ultimately, inadequate because these issues originate in the heart.
This truth regarding the heart is a concept which Jesus expressed very clearly. (See Matthew 15:19)
Where there is genuine hatred; where there is a desire to inflict pain and violence on others; where there is discord or feelings of mistrust and animosity toward people who are in some way different than us there are hearts that need to change. Again, laws and political action are not without value but these responses do not, for the most part, change human hearts.
Heart-change is God’s area.
So I realize that responding with talk of God and prayer seems weak, ineffective and bothersome to some but I genuinely pray for heart change. I pray for God’s love to prevail. I pray for God’s people to be models of His love, patience, mercy, reconciliation and grace.
I have not always been the agent of God’s truth and love that I should be. I haven’t always expressed the presence of Jesus in me to the disagreeable situations of my life. Therefore, I begin by praying for His authentic and tangible work in me.
And I pray for His love in us.
God’s love is extraordinary. God’s love is profound. God’s love is perfect, complete and comprehensive. God’s love will ultimately prevail.
I pray for His love to prevail in my heart today. I pray for His love to prevail in His people today. I pray for His love to prevail in our country today."



~ Dan Marler ~ 



There is no better way to end this post today than with Dan's words..... 

Blessings and many prayers for our country... God's Word tells us it will get worse before it gets better.... Stand firm! Hard for sure but we know how the story ends. God will prevail! There will be a day of no more tears! We will someday Live on Forever!

~ Special Momma ~




The last pic I got of the Dallas skyline from CMC after my son's chiari decompression. I turned it blue. Lord, help us all....

Friday, June 24, 2016

Three Worlds

I had seen a post last night that was written here but I really have to share it here to go along with what this post is about. And no before anyone gets their panties in a wad, this is not a pity party post so read it for what ALL is being said...... 

"As a mother to two little girls with Down syndrome, I need parents of typically developing kids to know something.
I have needs.
And yes, they may be a bit special because I have "children with special needs."
Parental support from others in this crazy business of raising kids is essential in a mother or father's life. All too often parents of kids with special needs are isolated because their experience is vastly different from others. It is painful when support falls flat, or if it doesn't show up at all.
How do you act around your friends who have children with special needs, or around the woman at school you see at pick-up, or the dad standing behind you in line at the grocery store?
Here are a few suggestions for you:

10 special needs of special-needs parents:

  • We need you to bring it up. Ask us our stories. It's OK to ask questions. Most parents of children with special needs would prefer that others ask them about their child directly, rather than avoiding the topic. A smile or friendly "Hello!" is an easy icebreaker.
  • We need our kids to have friends. We want you to invite our kids over for play dates. If your child wants to have a play date with my kid or invite him or her to a birthday party, encourage it. Call the other parent and simply say, "How can we make this work?"
  • We need you to share your concerns. If you are concerned about something regarding my child, by all means, tell me about it. I may not have an answer for you, but I sure will appreciate a conversation about my kid. But we don't always need your advice. Feel free to talk to us about a new therapy or diet you've heard about. Just be aware that we've probably already heard of it/tried it.
  • We need you to make an effort. Effort goes a long way. Educate yourself about my child's special need. For instance, learning simple signs so that you can better communicate with a child who is deaf (and uses sign language) would be appreciated.
  • We need you to prepare your kids to hang out with our kids. If you know you will be spending time with my child who has a disability, talk to your child about it beforehand. Talk about behaviors, and ways your child can play with my child. Need ideas? Ask!
  • We need you to be considerate. Consider the age of the child with special needs. If it is a new baby or a younger kid, I may not be ready to talk about this parenting path I have found myself on. But that doesn't mean I won't ever want to talk about it. Follow my lead. I'll let you know.
  • We need your tangible help. Offer to bring over a meal, or help at a doctor’s visit. I'd love it if you hung out with my kids with special needs one afternoon so that I could take my other kids to a matinee.
  • We need you to treat us like other friends, too. Talk about other things with me besides my child with special needs. Believe it or not, I may just want to gossip about Angelina and Brad and their globe trotting kids.
  • We need validation. Don’t dismiss my concerns by saying "oh, my typical child does that," or my favorite "well, then my kid must have a disability too, because he/she does XYZ also." When I open up about a struggle, I want validation, not to be blown off.
  • We need invitations. Don’t assume I'm too busy. Ask me out to eat or to a movie. I may not be able to get away as easily as other friends who don't have kids with special needs, but I'll go if I can, and if I can't, your invitation will make my day. And ask me again!
What do you think? Agree with this list? Have something to add or omit, please do in the comments!
Also, if you'd like a PDF of this list to reproduce,
Check out Gillian's new book, Still Life: A Memoir of Living Fully with Depression, and visit her website, http://www.gillianmarchenko.com." 



So yeah, my last post about reacclimation, I'm still fighting with somewhat. Just a little differently. This post is kinda a part two.

Since the last post, I have learned that our daughter will have her tonsils out next month, we have a trip to Dallas again coming up and two to Little Rock plus Camp Laughter (Arkansas Children’s Hospital's day camp for kids with craniofacial anomalies) before the tonsillectomy along with pre-op and labs for that. After that, we have sleep studies again (hopefully) in August or early September so I can have reports before doing Dallas again in September, this time for both kids.

The annual Children's Craniofacial Retreat is going on now in Florida. I remember the only one we have gotten to do so far, was in Louisville 2011. We had a blast, minus the tornado warnings as we drove in! Yet even there, it was somewhat hard to fit in because we had never been, not been since and the syndrome my children have is "minor" compared to many that go so the kids really can't relate to ours and vice versa.  Sometimes I feel like we don't fit anywhere..... My daughter and son both share a craniofacial syndrome (Muenke) but I don't see any camps or retreats for those with Chiari, and he's too young if there even is anything. Now that my daughter is old enough, I am hoping there is a camp for kids with asthma or migraines (something) that she can start doing. Something fun...

I think part of my thoughts today stem from cabin fever. Not from being stuck at home but lack of social life, other than people wanting me to bail them out (Not jail), or financially contribute to things last second. My social life otherwise this summer is doctors appointments and hospitals. This summer, has been at home mostly, other than my son's surgery. He isn't allowed to do anything that would chance him hitting his head. Swimming is out too. The blog post copied above also struck a chord with me. Stuff like that always has.

Nothing has really gone on this summer that I know many have done or will be doing. You know, I'm somewhat okay with that. I'm better with it knowing that at least while my son was having surgery, my parents gave my daughter a fun two weeks. Everyone is busy with VBS at different churches, vacations, retreats, etc, I get that. When I have my daughter asking me why she can't do this or that or doesn't get to go to this or that, kinda makes it hard to swallow and explain to her at least some sort of possible lame reason why. It's hard to explain any time of the year why she isn't invited to birthday parties and sleepovers, why maybe one friend, if that of 20 invited ever comes to hers.

How do you do that? How do you explain to a child why the "normal" world works like this? I can suck it up and deal with it when I'm left out, I have my whole life, but why to a child?

We live in two worlds. Well, three in a way actually. One world is "normal" society, where most live there. The other world is the special needs world where everything us upside down but also has hidden blessings and sometimes really dark days. The third is what the two make together, yet sometimes where also you are when you know you fit in neither of the first two.

We are neither yet we are. Makes sense huh?

The "normal" world is where life is normal, no appointments or medical beyond basic "well child checks" type thing. The special needs where it is often about appointments, therapies, hospitals, surgeries, etc. Yet that world also has camps and retreats (If you have the money) for the kids and families to participate in. You also have the opportunities to share your stories with other families and hopefully help them some too. The dark side to the special needs world is the really dark days of either long hospital stays, days of war with other people to get what your children need, crashing diagnoses, death, etc.... Then the third world is a conglomerate of the other two. You are neither "normal" nor all "special needs" either.



Sometimes you are a blend of two, sometimes only one, sometimes all. All together yet completely separated by borders. 



It makes it hard to know where to be, how you fit if you fit at all and to find others who relate to you at all. It's probably all my fault but even at MOPS, I struggle with this. It's hard sometimes because I hear about everyone else's kids doing this or that and my son isn't...... He's just now really talking and it's not in any sentences. It was like that when my daughter was that young too but it's harder this time.... My son has carved his own path entirely.... We don't know what to expect with him at all. 

You listen to people talk about how good their child is doing at ______ and yet you sit there realizing that yours do none of that, either because they can't or there is no funds/time for ____........... 

You feel joy because you know how blessed you are with your gems yet shattered at the same time because of what they are not doing. 


When you talk to other people about this stuff, you are told that you aren't looking at your blessings enough, having a pity party, "so many have it worse so get over it." "You need to pray and find peace more." and the list goes on.... 
Nothing is validated and most is minimized so then is it justified, or do I just need to suck it up and get over it? Am I just cynical and pessimistic


I don't think that's what Jesus would say to me though. I think Jesus would say something like this: "Find joy, as God has given you nothing more than you can handle. (Easy to say sometimes) Find comfort in Me and I will give you rest. Everyone else may fail you or worse, but I will neither fail nor forsake you. Your children and you have a purpose. You may not understand now what I am doing but someday you will." 

May I always remember....... May it be easier too.... May I always remember that this isn't forever, that I try to focus on the good of the day, not whatever didn't go right..... Some days will be easier than others...... May I feel and see the good in others better as well.  


May I finally also learn contentment and peace, no matter what or where I am.....
Bear the shared blog post in mind with those around you too.....


Blessings!
~ Special Momma ~

Sunday, June 19, 2016

Reacclimation

DISCLAIMER: This is not a bashing post/ read the whole thing and you will see. 

I'll have a title for this by the time I'm done writing but at the moment, I don't have one. May 22nd was my last day at church before my son's second major surgery. That Sunday I knew I would have prayer warriors for my son. I felt loved. Once I got home from surgery I knew there were two families who got together to help with meals once home. Others had goodies and gift cards to send with us. My parents were visiting and kept my daughter busy while we were in Dallas. I stayed busy..... 

It helped soothe the ache in my heart that maybe I really was doing the right thing for my son. Yet I prayed that my daughter would feel loved too by our community while we were in Texas. And she was. 

I have been out of church almost a month. Our Sunday school group when we weren't here periodically checked in to see how all were doing.

Life started going back to whatever normal is this last week. Appointments and drama trying to settle whatever needs done about my daughter's sleep study along with the usual fights with SSI. The main thing now is school is out, no therapies till post op and mostly home bound with my son for risk of his head getting hit. Outings are allowed but no playing or being in areas of risk to his head, whatsoever....





I'll admit getting ready for church this morning, I wasn't expecting pomp and circumstance over coming back, that's silly. Yet to be honest, I think my pride got wounded. Pride always comes before a fall, we all know that. I came in expecting to be talked to by more, asked how my son is, people miss him, we are being prayed for, you know.....


Today was mostly silence minus small talk in Sunday school and a few who asked about my son.

Two things that I had to realize though, even though I was surprised today, today was a normal day for everyone else except me and I expected them to see that which wasn't fair, and really it's not about me. If I am coming to church expecting a big warm welcome back and it really wasn't what my prideful brain expected, then it's me that needs to be adjusted.






I still remember spring of 2011 I was in Dallas almost a month. Two weeks of that, it was just me and my daughter. That had been the second time I had to send my husband away on Greyhound. I felt alone..... So little contact with the outside world. 


When I finally got home, I was the one who had to reacclimate to the ordinary world. That was hard for a few days.... Back to business of cooking, cleaning, appointments, calls, raising kids (Just one at that point), etc.

You get home from the last medical mountain climb and get thrown back into "normal" life. Yet trying to always adjust to new changes mixed in with the old normal, takes time. Time isn't for us though.

The Earth continues to spin and rotate no matter what our inner world is doing. No matter if we go to work everyday or stay home all day, life goes on. Nothing stops.

Yet is it really about us? Not really...... We like to think it is to some degree, that we matter, that everyone is thinking about us a lot or at least, we think that's the case. Yet everyone around us has things going on too, many just not as big of stuff but sometimes big to them....

Deep down weather we admit it or not, a part of us knows we just went through something major and wishes those around us saw things the way we did. We wish we would get a pat on the back, hugs or whatever and hear the words, "You did it, You got this, I understand, can I help?, etc." stuff.

Yet if we stop and see, most of us have gotten some if not all of that. Just maybe not as we expected.

It is like that, that we need to think about our expectations. Others are not us and we aren't them. Our world is not theirs and theirs isn't ours.... So hard sometimes for even typical families to understand.... 


And as I try to make my way
To the ordinary world
I will learn to survive


I think that fits it best. I had a post with that song title on it recently. That song is still stuck in my head but that chorus seems to almost be a theme for the journey. This isn't the first or last time I'll ever have to re-acclimate with today's world... The emotions during that process is what is hard to tame sometimes....

We will learn to survive. We will make our way THROUGH the ordinary world, WE will find the compatibility with JOY and CONTENTMENT no matter what, because no matter what, God is with us, through us and IN us. 


Blessings! 
~ Special Momma ~ 


"Real life isn't just about pain, it isn't just about joy.  
It's a harmony and melody of both."
Jonathan Peterson

Wednesday, June 8, 2016

Chutes and Ladders

Since my son's surgery Monday, our hospital stay has been much like the game Chutes and Ladders. Most of you remember that game.

I remember playing this game as a kid, especially with a child psychologist I used to see. I would always get excited to get the really big ladder on 28 and 1 but not so happy with any of the chutes, especially the big one on 87 and 62.

Surgery was Monday and was more complicated than first thought. It's apparent when the first words out of a surgeon's mouth is "He likes to cause a little trouble doesn't he?" My son has never played by the book. He's often outside of the box. Surgery went well but was definitely more than first thought and it looked worse than what was first appeared.

Since getting into ICU we had a fight to try to get anything to stay down. We are on day 3, on the regular floor as of yesterday afternoon and still struggling with keeping food down but at least now we are getting better with the fluids, just not at ideal yet. We are trying for oral meds today to see how that goes and him out of bed. First syringe of oral meds barely went down, his grimaces were fantastic! The second, the one I know he likes (Zyrtec) he completely spit out. Breakfast earlier in the morning didn't work out well and the BRAT diet last night also resulted in a NOPE! I have called him Mt. Vomit with occasional eruptions today.



Hopefully we'll quit having eruptions before long and we can get his IV port out and go from there. Till that's out, he can't walk around any. I bet once it's out, he's gone! And maybe even the therapy dogs can come by today and cheer him up. We can only take on so much Shrek! lol (He loves the ROAR)



I think that's the perfect analogy for any journey, but especially a medical one. Chutes and Ladders. Now let's hurry up and get to the top already!

Blessings!
~ Special Momma ~



Tuesday, May 31, 2016

Ordinary World

I think of RED's version when I hear that song but I know probably many think of Duran Duran. That is a song stuck in my head right now. Mainly the chorus:

But I won't cry for yesterday 
There's an ordinary world
Somehow I have to find
And as I try to make my way
To the ordinary world
I will learn to survive

This has been stuck in my head a couple of days now. (Red's version) My son's surgery is just around the corner, and appointments and more have been keeping me quite busy. In fact, I got his sleep study results back today. Not the details but enough. His central apneas were half of what they were at the last study and his hypopnea rate was much less as well. I'm glad yet scratching my head.

I'm thinking much about the surgery though at the moment. Before I had no question that it was needed now and yet as that dragon is breathing in my face, I think I'm starting to have doubts. Less than a week out and my brain isn't shutting up yet. And I know it won't.....

It will also be the first birthday for me that I have had to spend it in the hospital with one of my children. That doesn't bother me nearly like the unknowns of how all will go and how my son will do.

The all too familiar sights, smells and sounds are leeching into my head again. Yet this is unknown. I don't know this territory or anything and that in a way makes it harder to face. Second major surgery for my not two year old son. I don't know if we will still be in Dallas when he turns two or not but he will be too soon post-op for a birthday party. At least he won't remember any of this.

Yet I will survive, my husband will survive and my daughter will too. She of all people know what all of this means, even though she doesn't have Chiari.... 

"I can't escape the ghost of you." I can say that for the medical journey here too. Especially just before or just after procedures. The sights, smells and sounds linger, the ghost haunts me. I can close my eyes and sometimes just hear the familiar noises of the ICU machines, sometimes the smells just hit me when I don't expect it to and the dreams sometimes remind me of where we have been. 

My Ordinary World... Yet the world I'm in no matter what I say or do about it yet I do the best I can to choose to find the joys in it because it is way too easy to find the dark places....... There may be more darkness in it then I like but where the sun shines, really is bright. 






Blessings!

~ Special Momma ~ 


Saturday, May 28, 2016

Special Olympics



It was my daughter's first year being able to do Special Olympics. She has gotten several medals this year but these two were from Friday and Saturday. She got gold in standing long jump and silver in the 100m dash. This was at State which is a three day event. Opening ceremonies Thursday night was amazing. Over 3000 athletes from all over Arkansas gathered at Harding University for this. It was truly an amazing experience. I had chills when they honored those who had fallen (passed) in the last year. The rock concert put on that evening was a lot of fun. My daughter and a new friend had a blast. I embarrassed my daughter by "dancing" in the balcony while her new friend was egged on by me and danced too. lol I got the "Mom, you are embarrassing!" look. hahahaha Our group was on the far left in the pic below. Black shirts. (I had to blot out faces)




During our time I did also meet someone who has Apert Syndrome. I wished I had talked more to him but he was working for Harding in the dining hall. Sadly I didn't even catch a name.

The rain on the first two days didn't stop these athletes, now the thunder did once but..... these kids were amazing. Yeah, I'm even calling my age group 'kids' because so many were. Yet I admired all of them, no matter where they placed, people cheered for them. They all were and are champions.

Getting to see how proud these athletes are of coming to State was truly amazing.

Getting to see how there was there no "losers" was perfect. I told one of the other moms there that I wish more athletics was like that.
Getting to see these athletes getting cheered on, picked up, guided, wherever, was such a blessing.




"Let me win.  But if I cannot win,
let me be brave in the attempt."
Athlete's Oath



I will definitely say this, as hard as this journey is sometimes, it is moments like these that really fill my heart as well. With Special Olympics there is no "different" because everyone is there for one common purpose. To be heroes and to have fun. That's what it's about. The hero within!

I can't wait to continue with this. I look forward to the day when my son can be involved too.

Blessings!
~ Special Momma ~

Thursday, May 19, 2016

Inside Out

If you are a mom or dad, you probably just saw that title and thought of the Pixar movie. Yeah, that's kinda sorta where I'm going today. Admittedly we all can probably say we lean more towards one of the main characters over the others in our own personalities. Mine is anger. My daughter has played the Inside Out thought bubbles game. Anger cracks me up yet sounds like much like I would. Clip here  He really spazzes when you lose a level. I love his "I demand a recount!" saying.






Yet I also think of how anger can be good, really all of our emotions. Used right.

I also think sometimes of our lives working like the Memory Dump. Faded memories, dreams, ambitions,




Dreams, thoughts, memories forgotten, faded, no longer existing. When we see things happen that we know shouldn't yet there isn't anything we can do about it.... We feel like we should be able to hang on to so much.... Yet we can't.
We feel like we are trapped in our own "memory dump" where everyone has forgotten about us, we are fading away and yet with all the chaos around us, we are alone. We get to the point where it's us against the world mentality. We feel like we are drowning and everyone is watching.





But here is where they finally started working together.



I think that's where also in a spiritual way, we finally "get it" when it comes to working with God and His will for us....God knows, we don't "get it" at every bend in the road that comes.

Right now so to speak I'm enjoying the sunset yet the sunset also means darkness is upon me. Darkness not in depression but darkness as in the unknown.


My son has his second sleep study tonight and his chiari surgery is less than three weeks out now. His "quarantine" so to speak from the public starts about a week from now. Been there, done that but never done the chiari surgery before.... Cranal vault, x3, done that. Tubes, hearing tests, therapies, appointments, neuropsych, IEP's and so much more, done that. Know that, know how it works. This one is new territory. Never walked it, don't know anything of it, how my son will do or anything.... Hence darkness. The unknown. Right now I can still see what I'm doing, where I'm going but the sun is setting.



The walking path right now looks like this, hard to see ahead but at least a path before me. Once it is dark, all I can do is hunker down and wait it out.....


Yet God knows me Inside Out. That, is what I have to remember, in faith, that God knows what he is doing, even when I do not.....



Blessings!
~ Special Momma ~