Deciding your worth based on who you are in Christ not of your ablities or disablities

Lessons I have learned I felt passionate and inspired and I want to share with all of you. My blog has been dusty for a while I felt worthless of being published I felt perhaps I do not have people who are truly supportive or me based on my reader ship being so small compared to where the agents would like my numbers to be at 5,000 I am some where around only 1,000 but those 1,000 people I built friendships and trust with so in my eyes those 1,000 mean more to me then any larger number of followers ever could.

I put everything I do into helping others because I know what is is like to not have support or be able to find the right fit resources as a adult and mom who has a genetic disorder and raising someone with a genetic disorder. People are in shock when I speak and share my story. I'm in shock they are in shock.  No more helping others unless I get mutural benefits and no more wasting my time and getting nothing back in return. I am looking and seeking friendships who are not flaky, shady or move. I am done being that person who is venerable and open and walked over. That's what people do they will walk over you if they see you as weak. Sweet equals weak into days society.

So I am dusting off my blog and saying so what. Now insert Pinks so what song and you get my attitude when I share my passion on this . I'm ready to stand up and take my power back. I'm not going to let anyone else make me feel like I am small and a worthless mistake because of my genetic disorder.

I had to learn my gifts I had to dig deep and do therapy which is not just simply taking things out it's looking in word to discover my worth. I  do not find my worth in what anyone else thinks of me but in what God sees and thinks of me. 

Sometimes people argue that the Bible discriminates against disabled people. Frequently they will cite verses such as Leviticus 21:16-23:

And the Lord spoke to Moses, saying, 'Speak to Aaron, saying, None of your offspring throughout their generations who has a blemish may approach to offer the bread of his God. For no one who has a blemish shall draw near, a man blind or lame, or one who has a mutilated face or a limb too long, or a man who has an injured foot or an injured hand, or a hunchback or a dwarf or a man with a defect in his sight or an itching disease or scabs or crushed testicles. No man of the offspring of Aaron the priest who has a blemish shall come near to offer the Lord's food offerings; since he has a blemish, he shall not come near to offer the bread of his God. He … shall not go through the veil or approach the altar, because he has a blemish, that he may not profane my sanctuaries, for I am the Lord who sanctifies them.'

how does the Bible portray disabled people, and what does that reveal about God's heart for people with physical, sensory or cognitive impairments?

What do you personally think about people with these health issues what if someone you loved developed any of these or was born with any of these and there was no fixing the problem.

My thoughts on this is

You shall not curse the deaf or put a stumbling block before the blind, but you shall fear your God: I am the Lord." (Leviticus 19:14) really have meant that disabled people were inferior to others and unworthy to offer worship?

I once attended a church service where the guest speaker told the members of the church if you have cancer don't take your kemo to stay alive. I mean really. This is why it is so difficult for me as a mom with special needs and a child with special needs to addend services at church. They expect a child with physical adhd to sit still and be quiet not at my church but at a few I have visited. 

 

What Disability is Not

 

As [Jesus] passed by, he saw a man blind from birth. And his disciples asked him, 'Rabbi, who sinned, this man or his parents, that he was born blind?' Jesus answered, 'It was not that this man sinned, or his parents, but that the works of God might be displayed in him.' (John 9:1-3)

Nor is disability a curse, as some communities still see it:

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. (2 Corinthians 4:16-18)

Affliction or disability are not hindrances to God's grace in our lives – quite the opposite:

So to keep me from becoming conceited because of the surpassing greatness of the revelations, a thorn was given me in the flesh, a messenger of Satan to harass me, to keep me from becoming conceited. Three times I pleaded with the Lord about this, that it should leave me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me... For when I am weak, then I am strong. (2 Corinthians 12:7-10)

And, in contrast to the culture of Bible times, the culture in some parts of the world today, and the hidden culture that afflicts our own hearts when we shy away from disabled people (for a recent survey by Scope revealed that 67% of us say we are uncomfortable talking to disabled people, disabled people are not untouchable. Jesus demonstrated this when a woman with a haemorrhage crept up behind Him to touch the hem of his robe. She was healed and He singled her out for special honour because of her faith (Luke 8:43-48). When a man with a contagious skin disease broke the law that excluded him from venturing into the city, and fell at Jesus' feet imploring Him, "Lord if you will, you can make me clean", His immediate response was to stretch out a hand and touch this man whom the law forbade Him to touch, and declare, "I will; be clean." And immediately the leprosy left him (Luke 5:11-13). When God chose to incarnate Himself in the person of Jesus, his attitude towards disabled people was quite revolutionary in His day, and if we're honest, in our day too.

Disabled people are created, valued and loved by God

So the Lord said to him, 'Who has made man's mouth? Or who makes the mute, the deaf, the seeing, or the blind? Have not I, the Lord?' (Exodus 4:11, NKJV)

Disabled People in the Bible

 

But positive images of disabled people in the Bible are not confined to Christ's ministry; they are found throughout the Old and New Testaments.

Perhaps the best known example is Mephibosheth in 2 Samuel 9. He was the son of Jonathan and grandson of Saul. He became disabled when his nurse fell with him in her arms as she was trying to flee from danger. We don't know if he suffered injury to his legs or brain injury affecting the motor responses in his leg muscles, but either way he had a mobility impairment for the rest of his life. When David became king, he made enquiries as to whether there was anyone left from the house of Saul to whom he could show kindness for his friend Jonathan's sake. When he found Mephibosheth, he did not single him out for his disability – he simply did what he would have done for any son of Jonathan.when he discovered his disability, did he recoil from honouring him; he treated him exactly as he would have done if Mephibosheth had been a powerful warrior. He welcomed him to his table, gave him Saul's land and provided servants to farm it for him. This story becomes a powerful metaphor for the kingdom of God, where abled and disabled people sit together side by side as equals at the feast table.

In the kingdom of God, abled and disabled people sit together as equals at the feast table

Moses is another example. He was too frightened to speak to Pharaoh because he had a speech defect (Exodus 4:10-16). We don't know whether this was an actual speech impediment, or whether he suffered from a disabling degree of anxiety. Either way, God provided support for him in the form of his brother Aaron who was sent along to be his spokesman.

Elijah was very impressive in public; he called down fire from heaven in front of all the people and shamed the false prophets of Baal. He had great spiritual authority and was unafraid to challenge the king's wrongdoing. And yet the day after his great triumph he was in hiding, suicidally depressed, and begging God to take away his life. God's response, in 1 Kings 19, is very tenderly to care for his physical needs (food and sleep) to take him to a place of safety, and to speak to him in a voice of the utmost gentleness. How is it, then, that so many Christians feel stigmatised by their fellow-believers when they experience mental ill health?

In 2 Kings 7 there is a curious story in which the heroes are four disabled men – they are outcasts due to their physical condition, some form of skin disease or 'leprosy'. The King of Aram has laid siege to Samaria. The people in the city cannot leave and no one can enter; consequently the people are starving. A donkey's head changes hands for an exorbitant amount, and people are even reduced to eating the bodies of those who have died of starvation. God supernaturally causes the Aramean army to hear the sound of an approaching assault force and they drop everything and flee. Four men with leprosy (who have been excluded from the city because the laws do not permit them to live in the community with a contagious condition) are discussing their future. They decide that their only two options are to die a slow death from starvation, or to surrender to the Arameans who might kill them, or might in fact imprison and feed them. They decide the risk is better than the certainty of starvation. But on arrival at the Aramean camp, they find the place deserted and all the Arameans' possessions and food abandoned. They eat their fill, and then realise that they can't keep this good news to themselves; so they break the rules by returning to the city of Samaria, from which they are banned, and share the good news of their discovery. The food is distributed and the Samaritans are saved from starvation by the action of these four men. This, too, is a striking living parable for the church – it is those who are outcast and stigmatised who contribute to the life and health of God's people.

Of course, disability comes to most of us eventually; most of us are in our temporary, non-disabled phase! There are examples of people who, by reason of old age, have lost their physical faculties, but that is no barrier to them playing an essential part in God's plans. Isaac, by the end of his life, is too blind and too confused to be able to distinguish between his sons, or discern that a trick is being played on him. And yet the blessing which he pronounced on his younger son Jacob had lost none of its spiritual power, and the things which Isaac foresaw for his sons did indeed come to pass.

Similarly, Jacob, renamed Israel, and, by the end of his life too frail to get out of bed, quite deliberately switched his hands over and placed his right hand, the blessing of the firstborn, on the head of the younger of his two grandsons. Joseph, the boys' father, remonstrated with him, but he made it clear that this was no mistake; despite his physical frailty he had seen that God had particular plans for the younger boy, and like his father Isaac, the words he spoke in his weakness at the end of his life came to pass.

The Bible is full of people whose disabilities were no barrier to them playing a vital part in the history of God's people

In the New Testament, as well as Jesus' healing ministry to many disabled people, there are examples of disabled people portrayed in a positive way, and of God using disability for good in people's lives. Zacchaeus seems to have been of abnormally small stature; so much so that he had to climb a tree to see Jesus above the heads of the crowd. He had a history of making himself feel 'big' by defrauding people when he collected their taxes. Jesus noticed him, valued him, sat and ate a meal with him in his home. Being loved by Jesus enabled him to change and become generous.

Saint Paul became blind as a result of his encounter with Christ on the road to Damascus. We know from his own writings, and from the facts that he did not recognise the high priest (Acts 23:5) and needed to use an amanuensis to write his epistles (Romans 16:22), that even after Ananias had been sent to restore his sight to him, he had a continuing eye problem. He wrote to the Galatians:

You know it was because of a bodily ailment that I preached the gospel to you at first, and though my condition was a trial to you, you did not scorn or despise me, but received me as an angel of God, as Christ Jesus. What then has become of the blessing you felt? For I testify to you that, if possible, you would have gouged out your eyes and given them to me. (Galatians 4:13-15)

These are just a few of many examples of people vital to the purposes of God who had disabilities. Gideon seems to have had an anxiety disorder; Leah may have had a squint; Jabez was labelled negatively by others, but refused to be defined by that label; Naaman was more disabled by his pride than by his physical condition; Samson, despite being blinded, destroyed the temple of the idolatrous god Dagon; one of the first evangelists was the man who had been born blind (John 9). The Bible is full of people whose disabilities were no barrier to them playing a vital part in the history of God's people.

Disability in the Bible

Disability is seen in the Bible as something that catches God's attention:

Bartimaeus, a blind beggar, the son of Timaeus, was sitting by the roadside. And when he heard that it was Jesus of Nazareth, he began to cry out and say, 'Jesus, Son of David, have mercy on me!' And many rebuked him, telling him to be silent. But he cried out all the more, 'Son of David, have mercy on me!' And Jesus stopped and said, 'Call him.' And they called the blind man, saying to him, 'Take heart. Get up; he is calling you.' And throwing off his cloak, he sprang up and came to Jesus. And Jesus said to him, 'What do you want me to do for you?' And the blind man said to him, 'Rabbi, let me recover my sight.' (Mark 10:46-51)

This man whom others regarded as a nuisance and tried to silence, was noticed, loved and ultimately healed by Jesus.

Treating disabled people well is not only good for them, but for the giver as well:

Then Jesus said to the man who asked Him to eat in his house, 'When you have a supper, do not ask your friends or your brothers or your family or your rich neighbours. They will ask you to come to their place for a supper. That way you will be paid back for what you have done. When you have a supper, ask poor people. Ask those who cannot walk and those who are blind. You will be happy if you do this. They cannot pay you back. You will get your pay when the people who are right with God are raised from the dead. (Luke 14:12-14, NLT)

This point is made even more clearly in Paul's letter to the Corinthians, where he affirms that God gives greater 'honour' to those who are deemed to lack it:

But as it is, God arranged the members in the body, each one of them, as he chose. If all were a single member, where would the body be? As it is, there are many parts, yet one body. The eye cannot say to the hand, 'I have no need of you', nor again the head to the feet, 'I have no need of you.' On the contrary, the parts of the body that seem to be weaker are indispensable, and on those parts of the body that we think less honourable we bestow the greater honour, and our unpresentable parts are treated with greater modesty, which our more presentable parts do not require. But God has so composed the body, giving greater honour to the part that lacked it, that there may be no division in the body, but that the members may have the same care for one another. If one member suffers, all suffer together; if one member is honoured, all rejoice together. (1 Corinthians 12:18-26)

 

People with learning disabilities – the foolishness of this world?

Jesus recognised that God's profoundest communication came not in words to the minds of the wise:

At that time Jesus, full of joy through the Holy Spirit, said, 'I praise you, Father, Lord of heaven and earth, because you have hidden these things from the wise and learned, and revealed them to little children. (Luke 10:21)

Or, as the Amplified Bible renders it, not "little children", but "the childish, unskilled, and untaught".

Those of us who work with people with intellectual disabilities observe that they are frequently quicker to hear from God than the rest of us. They are often seen as foolish in the eyes of this world, but are wise towards God. Paul tells us in 1 Corinthians 1:25 that the foolishness of God is wiser than human wisdom, and the weakness of God is stronger than human strength.

So we can see God's special purpose for those with learning disabilities:

For consider your calling, brothers: not many of you were wise according to worldly standards, not many were powerful, not many were of noble birth. But God chose what is foolish in the world to shame the wise; God chose what is weak in the world to shame the strong; God chose what is low and despised in the world, even things that are not, to bring to nothing things that are, so that no human being might boast in the presence of God. (1 Corinthians 1:26-29)

Importantly, how we treat "the least" of all is how we are treating Christ:

The King will reply, 'Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.' (Matthew 25:40)

Amos Yong sums it up superbly:

If people with intellectual disabilities represent the foolishness of the world, what hinders our viewing them as embodying the wisdom of God?

This suggests that seen from an eternal perspective we should revise our whole view of disability. We who thought we had the advantages in life – the strong, the clever, the ones the world regards as 'gifted' – find that on a spiritual level we can be severely disabled compared to our brothers and sisters who lack those intellectual giftings, but whose spiritual life can be marked by abilities and giftings we never suspected.

Disability and our Christian Community

So, as a Christian community, whether an organisation, a church or a Christian Union, what can we do to ensure that the status of disabled people that we find in the Bible is worked out among God's people today?

The first thing is to approach disabled people with humility, in the way that the Bible instructs us to approach everyone:

For by the grace given to me I say to every one among you not to think of himself more highly than he ought to think, but to think with sober judgement, each according to the measure of faith that God has assigned. For as in one body we have many members, and the members do not all have the same function, so we, though many, are one body in Christ, and individually members one of another. Having gifts that differ according to the grace given to us, let us use them. (Romans 12:3-8).

Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. (Philippians 2:3-4)

We should serve disabled people exactly as if we were serving God himself:

Whoever receives you receives me, and whoever receives me receives him who sent me... And whoever gives one of these little ones even a cup of cold water because he is a disciple, truly, I say to you, he will by no means lose his reward. (Matthew 10:40-42)

Crucially, we must allow disabled people to use their gifts to serve us, the church and the community:

Speaking the truth in love, we are to grow up in every way into him who is the head, into Christ, from whom the whole body, joined and held together by every joint with which it is equipped, when each part is working properly, makes the body grow so that it builds itself up in love. (Ephesians 4:15-16)

The Christian disability charity 'Through the Roof' recently completed a survey of disabled people's experience of church. One thing that emerged is that among the disabled Christian community there is such a wealth of spiritual wisdom and maturity, we can only ask why more of them are not represented in church leadership.

We must treat disabled people with more, not less, respect and honour. As we have seen, they are to be given pride of place at the feast table (Luke 14:12-14) and treated with greater honour (1 Corinthians 12:23):

Pay to all what is owed to them: taxes to whom taxes are owed, revenue to whom revenue is owed, respect to whom respect is owed, honour to whom honour is owed. (Romans 13:7)

We must be clear that God takes unjust treatment of disadvantaged people very seriously indeed:

I will not revoke the punishment, because they sell the righteous for silver, and the needy for a pair of sandals – those who trample the head of the poor into the dust of the earth and turn aside the way of the afflicted. (Amos 2:6-7)

Strengthen the weak hands, and make firm the feeble knees. Say to those who have an anxious heart, 'Be strong; fear not! Behold, your God will come with vengeance, with the recompense of God. He will come and save you.' (Isaiah 35:3-4)

This may mean that at times we have to fight for the rights of disabled people:

He has told you, O man, what is good; and what does the Lord require of you but to do justice, and to love kindness, and to walk humbly with your God? (Micah 6:8)

We must go beyond mere inclusion. Disabled people don't simply need to be included (although that's a good starting place) – they need to belong. And in the church, of all places, there must be no 'them and us'. John Swinton explains this distinction very clearly:

The problem we have with society is a real emphasis – and a quite right emphasis – on inclusion. I think at one level that's fine. However, inclusion is simply not enough. To include people in society is just to have them there. All we have to do is make the church accessible, have the right political structures, make sure people have a cup of tea at the end of the service or whatever. There is a big difference between inclusion and belonging.

To belong, you have to be missed. There's something really, really important about that. People need to long for you, to want you to be there. When you're not there, they should go looking for you. When things are wrong, people should be outraged absolutely outraged that people are doing things against people with disabilities.[7]

We are the body of Christ, and so we should do everything that Christ's body did when He was here on earth. Where disabled people are concerned we should touch, embrace and love them as He did. Even after His ascension, Jesus gives us an astounding but clear example of physical love in action. In Revelation 1 the risen and ascended Lord appeared to John, His closest earthly friend. John saw him clothed with a long robe and with a golden sash around his chest. The hairs of his head were white, like white wool, like snow. His eyes were like a flame of fire, his feet were like burnished bronze, refined in a furnace, and his voice was like the roar of many waters. In his right hand he held seven stars, from his mouth came a sharp two-edged sword, and his face was like the sun shining in full strength. So awesome was the sight that John fell at his feet as though dead. And then Jesus did something truly remarkable. This towering figure placed His right hand on John. The only way He could have done so is by getting right down there in the dust and dirt where John lay. May we be willing to go to where disabled people are and be right there with them, touching them and showing God's love and care.

References [show]

© 2015 Ros Bayes

A Biblical View of Disability

Ros Bayes

About the Author

Ros Bayes taught Philosophy and Ethics A-level for ten years and has written 9 books including 4 A-level textbooks. She is the mother of 3 daughters, one of whom has complex multiple disabilities. Ros is the Training Resources Developer at the Christian disability charity 'Through The Roof' (www.throughtheroof.org). 
View all resources by Ros Bayes

 

You need to know your gifts all of this comes from all of the hard times we go though. The lessons we learn from our challenges we can help others and pass on this knowledge we have experience personally. We must develop trust in our self and in god spirit to move us and give us that gut nudge when we know enough is enough when we reach others and we do not get anything back for our energy and efforts. Disabled or not take time for yourself you can not give to others from an empty cup. Take time to reflect on lessons learned and pass those lessons on to other people so they do not make the same mistakes.

choose kindness and love and if you happen to come across a person with disablity or not treat them like they are of worth and of value that is how God would see it.

Thanks for reading I felt so strongly and passionate the bible study is one I did and followed along I felt I should share that'ss is why there is reference to it. It is a excellent resource website.

Let me know in the comment section below what you think about adults with disablity's

 

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Introduction video to our Youtube Channel

Introduction video for our Youtube channel. 

I did this video in the first part of the summer there have been a few changes since but I hope you enjoy this vblog. If you do like, comment and subscribe.

Update from this video is that Bella does not need Vpi surgery we are going to do a different treatment plan altogether.  Stay tune for more videos.

 

What I wish I knew before I found out I had 22q

What I wish I knew before I found out I had 22q

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It been ages since I did a rant blog post!

I call this what I wish I knew about 22q because even after all these year efforts of research is still unknown of how this affects us who have 22q.

 There can be a bit of variability between each of the conditions. Such as 22q11.2 deletion can be a trisomy or there can be chd or no chd. You can have thyroid issues or no thyroid issues. You can have learning speech hearing heart issues or none at all. I wish I knew and understood that no two people with this disorder are affected by it in the exact same way no matter how hard I searched for answers and asked others who have it or have kids with it I always found out there are some similar characteristics but not all of the exact same symptoms and even if we had the same symptoms as someone else there are for different reasons.

I knew what Digeorge syndrome was but I did not understand velocardiofacial syndrome until a few years afterward I did not understand the basics of genetic 101 I can now probably teach a seminar class on it.

I did not know there is an entire country who wants to wipe out rare genetic disorders and completely get rid of anyone who is a big quirky odd or different with how God formed them. I did not understand why parents were shocked when I could raise my own family when I told them. I did not understand the hatred of people who have this disorder but yet claim their love for their own child they too will have a child who grows up one day to be an adult like myself.   I also did not think parents would never want their 30 year old live on their own and be functional adults in the real world I didn't know why parents were so over protective until I had my own child. I will not limit my daughter like some of the parents I know and have ran into but instead, encourage her where she needs encouragement and help her by nurturing her independence no matter how stubborn or strong willed my redhead has become at 10 years old. I am so thankful for her stubbornness because that is what got her through all those years of multiple doctors visits her leg braces and her dental work. That what pushed us past our limited views of others to help us reach our potential we ran a 5k together not many normies can say they did that. 

I understand now the fear is the unknown and the hate is not hated but it is grief it a loss of life they thought they were going to have. I get it I have my own daughter who has it. I too experience all of the awful mixed up emotional feelings that come from having this disorder but I did not allow my self to stay stuck. I educated myself and I am educating others so they know what to expect once knowing what to expect they can be hopeful that is the worst case or they can hope for the best case but either way there is hope after knowing what they are getting into.

Feeling pretty lost scared and confused is a typical day to day functional normal for us none normies who are trying to figure life out. Adjusting to routines and schedules is a challenge trying to manage just a two bedroom apartment can be a chore for someone like myself but here I am doing it basically wiping my own butt. I am shocked that others are shocked that I too can wipe my own butt and look after myself and not only look after myself but after others as well. I am a wife mom and step mom some define what I do a success

I am not impressed one bit by being someone inspiration simply because I am stand to own my own two feet and get up each day and do things that I have to do. I get some people can't I really do get that but to label that all of us with 22q can't do that is unfair and it is already setting more limits on the limits that are already in places. Screw the limits set by others is what I wish I knew!

 

I have anxiety and Adhd and ptsd but most days are good days medications are little because after all these years I have coping skills and things set in place I know that will help. such as sticky notes and how to guides I use a binder system to keep track of everything. I also have a binder for everything I really wish I knew about this binder system that I use. It would have made high school so much easier.

I wish my passing out spells I had in high school were vaggo vessel and that I just had to take this pill for and it would all go away. It does not go away with just a pill I wish it did.

It can be scary to hear your child has a genetic disorder. It can be scarier to know you also have the disorder what is even scarier is knowing you have a disorder and having a child any how because hey life happens and birth control is only 99.9 effective.

I see these worst case scenarios in support groups and such and watch others just stare and hear crickets when I write a post about the good stuff but when I write about the bad everyone comments. I wish I knew I was only a relatable human being by sharing about my stomach filar ups. I would have written a blog post and shared pictures of every time I picked and hugged the toilet bowl I wish I knew you all would cheer me on for that. I wish I knew what I needed to do to be part of a support group to be a team player rather then having to create a blog and website and from my own tribe. I wish there was a tribe for me where I could fit in but it is what it is. I wish I knew life is what it is before life got all messy by my trying to fix it and help others.

I wish I knew how to handle the stress from the nonstop specialist and pt and ot appointments we had to attend and that I had to attend while I was pregnant and after. If I did I would not have ended up in a 72 hour phyc hold with an over dose of Ambien just by mistakenly trying to simply sleep because my brain wouldn't shut down. I wish I knew how to write about that moment to help others to prevent others from going down that path that I did. I wish I knew about 22q.

I wish I knew my brother who passed away from having 22q at 6 years old. I wish I knew what I outlived him. I wish I knew why God takes the little child and not me. I wish I didn't have a second hospital trip for a medication over dose because I didn't know how to process grief I didn't know how to deal with my father who disowned me who has 22q as well. I wish I didn't learn these coping skills from my step mother who enjoys attention seeking behavior choices and takes tynole by the bottles when life gets too shitty for her. I wish I understood mental illness when I was a teen.

I wish I didn't have to have a complete mental break down after I had my daughter when she was 1 and another when she was 2. I wish I knew I had ptsd do to the major abuse and neglect from my parents. I really wish I didn't have to hold all of this in until I was 25 years old. I am 34 years old and I really have only enjoyed living life since that last trip to the mental hospital. I am recovered by the grace of God I understand why God allows bad stuff to happen to good people I didn't know then I wish I knew that too why God allowed 22q. 

I know now I know from the bible study's from the medication from the teachings from all the years of hard work in therapy. I wish I could pass all of this knowledge on to others so hey don't have to feel so crappy about having 22q or living with someone who has 22q but what I know is people are going to do think act and feel how they want and there is nothing I can do to change that. I also wish I knew I would make and lose friends who have 222q based of what others perceived about me. I wish I knew all of this about 22q

I wish I didn't see this from a parents perspective and also somebody that suffers from it. I wish I knew all of this about 22q.

I wish I knew that insurance did not cover anything related to my daughters health condition and that having children's special health was useless because Medicaid will cover generics of what she needs.  I wish ssi knew what 22q digeorge syndrome was and that it not going to get healed because she can speak. I wish I didn't have to appeal ssi or have to deal with ssi every time we tuned around but only one of us can work because I have no ablity to stay at a full tme job with the ups and downs of my own illness. I wish I knew there was more support.

I wish I knew all of this about 22q.

What do you wish you knew about 22q ?

 

 

 

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The need for Self-Discipline

Hello everyone, it is nice to see all of you!

Have you ever felt like you were on the outside looking in?

My name is Amanda Ripsam I am 34 years old and look younger than I appear.

I am often told I look no older than 15 and too young looking to have children at the age the kids are. I live in Otsego, Michigan.  I have 4 kids, three out High School and a 10-year-old daughter named Bella. I share mine and my daughter‘s adventures living with 22q on my site mommiesquietplace.com.

I was originally born and raised in Toronto, Ontario, Canada.

I have a unique perspective living with 22q11.2 deletion syndrome as it also affects my daughter, 3 of siblings and my father. There are over 180 conditions that can appear in a person who has 22q from heart issues to learning delays and all in-between. There is no cure and it is a managed condition. I was diagnosed with 22q when I was 21 years old.

Today I am 34 and I am a parent mentor and special needs advocate and have my own website that I use to help walk others so they are not feeling alone and isolated like I was feeling. I formed my own tribe. When I couldn’t fit in with anyone else tribe!

Living life with a rare genetic disorder is like running a 5k race! Recently I shared on social media that Bella my 10-year-old with 22q and cerebral palsy and myself ran into the girls on the run 5k race in Kalamazoo, Michigan, I posted at check in points on my website as my daughter left me in the dust running as hard and as fast as she can with her coaches.

With 22q there are no coaches!

My goal for my ministry is coaching others through life with special needs children who face challenges like 22q.  My passion is mentoring other people so they don’t have to walk an unknown medical mystery journey without a coach cheering them on!

My training for 22q was my own journey and watching my siblings endure life with 22q and my 6-year-old brother passing away from complications of this disorder. I was well informed and trained before I had my own child.

Climbing the hills of the battle against 22q and beating this illness one symptom at a time often makes life feel as though you have been clawing your way running up that steep hill at the 2-mile marker during a 5k race. I am sharing about our race because even with Bella having a secondary disorder called cerebral palsy I am enduring and persevering through our struggles with this disorder while overcoming other challenges our family faces day to day.  I can describe that our adventures are like the feeling it feels after the 2nd mile in the race and you just have to keep on going no matter how exhausted and jelly like your legs feel. 

To get to the 5k finish line you have to push through being worn down. 22q can make you feel worn out and burned out. Learning about any medical condition can and will take it toll on a person physically mentally and spiritually.  I share on my website how I try to balance life one step at a time.

Life with 22q is just like the 5k race.   Just when you think you’re almost there at the second mile you look up and see you are not done yet, but you look down and see how far you have come!

  This passage has been a source of strength and has helped get through this journey.

1 Corinthians 9:24New International Version (NIV)

The Need for Self-Discipline

This is the verse that has helped me keep on pressing on

24 Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize.