Category: Cereabal Palsy

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A Fight For Our Lives

It’s been said ,”that it’s the scrupy wheel that get’s the grease”. It seems I’ve been the scrupy wheel quite often these pass few months. If I have a cause that needs grease then I have no problem stating my case. From mental health issues, accessibility for disabled persons, inclusion for all, funding for disability needs, etc. We have to fight for our lives!  I feel this should go public, just to give you a glimpse into what we have to fight for and this is just a taste.

Several months ago I contacted  our MHA; Ms. Pam Parsons because we were barely surviving. I was speaking with her assistant, who I poured my heart and soul out to. Only to learn we did not qualify for anything ( I’m referring to some help, care and cost for Lauren who has Spastic Quadriplegic cerebral palsy) because of my wife’s income. I heard back from Ms. Parsons this week, not because of my visit to her office but because of my appearance on the NTV show, Heart Matters. It was obvious to me she did not make the connection. When I brought it up, she knew nothing of my visit and had to look up my file to see just what I was all about. I sensed a little disconnection on their part.

After a lengthy conversation with Ms. Parsons it was obvious to me that the Provincial Government was certainly not going to be our lifeline. Yet she did promise to work on our “file” that wasn’t looking all that hopeful.

She then suggested I contact our Federal MP; Mr Ken McDonald. Which I did and again could only speak to his assistant. I documented every word I said during this conversation. And I thought I should share it with you in hopes that public knowledge would add extra pressure.

She started the conversation with, “well what is it exactly you are looking for?” And I started my lengthy monologue:

What I am fighting for is our lives, I feel we are a family drowning in despair, tired of fighting, totally exhausted.

I have fought mental illness all my life, but five years ago I experienced a total mental breakdown. Meaning I was rendered totally disabled; unable to function. I was told by my psychiatrist there was no cure for my illness and that I needed to apply for Canada Pension Disability because it was unlikely I would ever return to work. Our world that day was forever changed. I went from a person that was self-employed for 28 years, to a person with an income of $900 a month through CPD. And because of my illness my brain and body totally shut down.  So my wife was now caregiver for me, my now six year old son, plus our now four year old daughter; who at one years old  was diagnosed with Spastic Quadriplegic Cerebral Palsy. Again a second life altering diagnosis that we had to face, in an already struggling family.

We lived in St.John’s as long has we could until we were forced into bankruptcy and lost everything we had. And on top of all this chaos, struggle and stress, my wife still had to work in order to keep this already struggling family together.Because of all this financial ruin we were forced to move to Bay Roberts; to be closer to family for some support.

Now five years have passed, we are still fighting to hold the pieces together. I am doing much better but far from a functioning, normal human being. With all the hell my wife has encountered, she was diagnosed now with severe anxiety and depression. Thus she was forced by her doctors  to take a leave; no human human being could survive the amount of stress that she is under and still function in a classroom of 28 children and not have a breaking point.

Its certainly true  that in our society today it takes two incomes for a normal family to survive. We are far from  “NORMAL”. Lisa’s income just does not cut it. With Lauren’s needs alone we require one income, to support her needs. Thus far we have had to depend on family, fundraising and various charities. This financial burden should not be placed on others. it’s not their responsibility to do so. And it’s not our lifestyle to be constantly looking for money from family and the general public, they have done enough. Now it’s time for the Government to step in. Lauren is a child that requires much needed treatment, equipment and care; for which we get no assistance.  She deserves better! Now what are you going to do about it?

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When God Says, “NO”!

I have prayed many prayers and of course expected a yes answer; in His time. But what if my answer was a “No”. This thought came to me today, well if God doesn’t want  to answer my prayer with a yes. What then?  How do I  react, what are my feelings toward God; will I be angry, disturbed or even become bitter. Would I question God and say, “why not”?  Did God say no in the bible to prayer request? I really don’t know the answer to those questions. So it’s my quest for this blog to search for the answers and share my findings with you. So let’s begin our journey.

Let’s start by looking at our earthly father. Did my Dad always answer yes to all my request? Not really because he would always say, “ask your mother’. And of course Mom had no trouble saying no when necessary. Looking back now, I really see that no wasn’t always a bad thing. No was for our own good, for our protection, safety and well being. It didn’t mean they loved us any less but sometimes a no answer was a, “because I love you so much answer”. So I believe there is a great parallel between my earthly father and my Heavenly Father. When God sometimes says, no, it’s because He has a greater yes in store for me/us.

Let’s explore the Bible and search for times when God said, no, to His people. In 1 Chronicles 28:3, God said no to David. ‘God said to me, “David told his people, “You shall NOT build a house for My name because you are a man of war and have shed blood”. But in his parting words, David chose to focus on what God had allowed him to do. Rather than wallowing in self- pity or bitterness regarding his unfulfilled dream, David praised God with a grateful heart. O may I learn  from David and have a grateful heart. Right now, that’s not exactly  where I am but through my weakness, I will find my way and gratitude will come.

The Bible says, “If we ask anything according to HIS WILL….we have what we asked of Him (1 John 5:14-15). This verse tells me there will be “no” answers, if what we are praying for is not His will. Here we must trust that God knows what He’s doing and sometimes in our human flesh we may be outside the will of God. “thy will be done on earth has it is in Heaven”.

The apostle Paul, author of most of the New Testament, begged God three times to remove a thorn in his flesh and God said, “no” (2 Corinthians 12:7-10). God had a greater purpose in mind, far above what Paul could ever imagine.

Then  one of the greatest “no” answers to a prayer was Jesus himself. When He prayed to His Heavenly Father, the night before He died on the cross, that He would rid Him of His suffering and God said “NO” (Mark 14:32-42). If God  hadn’t told Jesus no, we would have never had the opportunity of salvation!

Now on a more personal level, I have prayed to God countless times and  got a “no” answer. That can sometimes leave us angry, we question God and ask God, “why not?” It can make us feel that God is not listening to us or doesn’t care. But none of that is true. God loves us with an everlasting love (Jeremiah 31:3). God has our best interest at heart, “For I know the thoughts that I think toward you,says the Lord, thoughts of peace and not of evil, to give you a future and a hope” (Jeremiah 29:11). The song says, ” My HOPE is built on nothing less, then Jesus blood and righteousness”.

When my Dad was diagnosed with stage four liver cancer, my world was forever changed. My Dad was a man of great faith and if faith had anything to do with being healed, then he would certainly have been healed. But God’s answer was “no”. I couldn’t understand; weeks later he passed away. But he left me with the greatest answer to my question of why God says “NO”. On his death bed he had an amazing attitude and trust in God. For he said,”I cannot loose, either way I will win. I will be healed or if not, I will still win because I will go to my home in Heaven that God has prepared for those who love and serve Him. Through Jesus dying on the cross, He had taken away the sting of death. “Where, o death, is your victory? Where , o death, is your sting? The sting of death is sin and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ (1 Corinthians 15:55-57). So even when God said “no”, Dad still won and was victorious through our Lord Jesus.

With my own illness, I have sought God’s  healing numerous times but because He hasn’t healed me completely, doesn’t mean that His healing hasn’t taken place in my life and for that I am grateful. And with Lauren’s Cerebral Palsy I have often wondered ; where’s the fairness? What’s the purpose? I have more questions than answers for our lives’ struggles. But there’s one thing I’ve learned and that is, I could never do this in my own strength. I lean every day on Him, for He said in 2 Corinthians 12:9, “My grace is sufficient for thee, for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities (boast in my weaknesses), that the power of Christ may rest upon me.”

So I guess God does not always answer our prayers with a yes. And I’m sure that is for the best; God knows what he’s doing. In our finite minds we cannot see the big picture. I’m learning everyday to put my trust and faith in Him, especially when He says, “No”! And when He does I have to realize that it’s for my good, it’s not to hurt me or that He loves me any less. So sometimes when we feel our prayers go unanswered, God is listening always. In His time, in His way, He will answer!

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A Therapeutic Reflection

Here it is… Yet another therapeutic reflection:

Life certainly has it’s modern conveniences! Practically everything we could need, or want, is at our fingertips. Our immediate access covers from worldwide information to Keurig coffee! It’s only when there’s a glitch in the system, do we even stop to realize how good we have it.
Up until now, we have enjoyed, and have probably taken for granted, the seamless flow of life’s ease of access. While Lauren was a baby, she appeared like any other baby. Cerebral palsy didn’t show itself much at all. Now, Lauren is becoming that independent little girl who wants to “do it myself”! This is when we realize that many of life’s conveniences are not quite as accessible to someone with a disability.
It’s 2016, and some public places have no ramps, push buttons for doors, adequate space to move a chair, proper bathroom facilities, etc
You see, even at home, the required equipment for daily living is different, yes different, from others. ‘Special’ chairs/seats and required therapy items cost double to triple that of the ‘regular’ needs.
What’s my point?? I guess it’s just that we are coming to terms more and more with the additional obstacles that Lauren will have to hurdle. As her parents, our role is to keep these issues as ‘just obstacles’ and NOT
‘limitations’!
Society, too, needs to pause and take note of exactly ‘who’ our modern conveniences cater to. Not everyone will be able to see past the obvious, but those of us who love someone who has a disability will become much more aware of what is often take for granted!
Our goal is to empower our children to find their way in the world. Life has conveniences, yes;but, life is posing challenges now that were once unimaginable! Equal opportunity for all means that some will require different means in order to make it to the same place. Lauren, and other children with disabilities, are no less equal because they are ‘different’. In fact, their ABILITY to find ways to ‘do it myself’ in spite of their DISABILITY, is a lesson to all!
Lisa

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“Before God Intervenes”

With so much going on in our lives, we often have to stop and wonder; where is God in all of this? Why can’t God just intervene right now, we know He can, and not wait until the midnight hour? We have certainly been at the midnight hour more than I wish to remember. Times when things looked so bleak, so hopeless and no light at the end of the tunnel. And I am just not referring to my own illness but many other ills that have come our way. Dare I question God and ask, “When will you intervene, when will you calm the raging storms?”

God’s intervention is not always on our timing but His perfect timing, so that glory can be brought to His name. God sees the whole picture, the perfect plan for our lives. Isaiah 55:8-9 “For my thoughts are not your thoughts, neither are your ways my ways”, declares the Lord. “As the Heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts”. So what God see’s for us may not be what we think is for us. His thoughts and ways are much greater than anything we can imagine. That’s why we have to trust in His perfect timing and will for our lives. Not always easy to do, and this is where our faith comes in to play. Believing and trusting in the God of the impossible.

My wife (Lisa) had a post on Facebook a few days ago and it sum’s up so perfectly God’s timing and intervention in our lives. And I wanted to share it with you, with her permission:
Before God intervened, He allowed;
-David to stand before Goliath
-Abraham to have Isaac lain across a sacrificial altar.
-the three Hebrew young men to be thrown into the fiery furnace.
-Daniel to spend the night in the den with starving, threatening lions.
-Lazarus to die
But then…..
He proved Himself….
I think the point is that while we sometimes think that God should, and will, step into our lives and fix the ills immediately, it appears that God sometimes wait until the midnight hour to intervene.
With that knowledge in mind, Oh for the trust, faith and courage of David, Abraham, Shadrach, Meshach, Abed-nego, Daniel and Lazarus; to believe that God’s intervention will happen just at the perfect time! Amen…
Lisa

I was also enlightened with Sunday morning’s sermon. A verse from Isaiah 45:7 which says,”I form the light and create darkness, I bring prosperity and create disaster: I, the Lord, do all these things”. I don’t ever remember this verse speaking to me before but on Sunday morning it did. What it spoke to me was, and this is my opinion; that God is in control of all things, whether they be good or bad. But He is God in control and I have to submit my will to Him. And trust no matter what the circumstance, what mountain I’m climbing, what storm I’m in; God is in control.

With all of lives ills we wonder why we have to wait. Noah spent 370 days on the Ark, why wait? Abraham and Sarah waited 25+ years before Isaac was born. Sarah was 90 years old when Isaac was conceived, why wait? Moses led the Israelites from Egypt to Canaan, a 11-day journey; but took them 40 years, why the wait? Lazarus was dead for four days; was Jesus too late? Never! It was all in God’s perfect time, perfect will and perfect plan.

So, you see, no matter what your circumstance is today; you may see no way out. God will intervene! I’m believing for myself, my family, my Mom today who is in constant physical pain (to Mom; God as not forgotten you, He will intervene and take away your pain, I’m believing for you. This is my act of faith.), friends and all those today who are in the depths of despair and feel like they’re drowning; God will intervene and calm your storm. May we all just “Wait” on Him and know that we are not alone, HE WILL INTERVENE! Just wait and see.

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Conductive Education

A bumpy flight and a bumpy two weeks in Halifax, NS. We attended a two week session of Constructive Education with The March of Dimes. It’s program designed for clients having movement difficulties due to brain damage.

The first week started with a large bump in the road; it got totally cancelled due to a family emergency at the clinic. And Lauren’s conductor was off for the week.

Thank God we had relatives in Halifax to help us through this first long week. Keeping the children and ourselves occupied and happy was a full time job. But we made it through that first week, being very disappointed that Lauren had missed out on a full week of treatment. But that was unavoidable, so that was all we could do and we just made the best of it.

The second week was full speed ahead. Lauren was scheduled for Monday-Friday, 9:00-12:00. So three hours of intense treatment/education. She was fully engaged for these three hours and every body part was included. She was amazing and making such progress.

When we left at the end of the session, we were all exhausted but so excited about the program. This is what we’ve been looking for and what Lauren needs so desperately. But the bittersweet pill kicked in at the end of the week. This is what she needs but not available in NL. So far out of our reach.

So now we know what we need but how do we get it? So we start our search to find a way to get this program offered in NL. Nothing is impossible, if we believe and find a way for it to happen.

So sad when you know this is what your child requires to find some form of mobility. But so far out of our reach and control.

What is Conductive Education?

“Conductive Education® is a community rehabilitation program offered through March of Dimes Canada whose mission is to maximize the independence, personal empowerment, and community participation of people with disabilities.

Conductive Education® (CE) is a program that combines physical rehabilitation and education to help children and adults with neurological motor disorders or who have had a stroke or brain injury. Conductive Education works on the brain to change the body. Participants are taught skills and techniques to help them overcome the challenges of their disability – they learn how to apply these strategies to their everyday life, becoming more independent.

Designed specifically for people with neurological motor disorders, Conductive Education offers an alternative group setting approach to rehabilitation for people living with:
Cerebral Palsy
Spina Bifida
Multiple Sclerosis
Stroke
Parkinson’s
Acquired Brain Injury
Thousands of Canadians are diagnosed with these conditions each year. Conductive Education and March of Dimes Canada are here to offer help and support to these individuals and their families.”

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The Reality Of My Diagnosis

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“There is no cure for your illness”, were the dreaded words I hear roaming around in the back of my head; coming from my doctor’s mouth. I just wanted to duct tape his mouth, so I wouldn’t hear the reality of what he was saying. But he wouldn’t stop; “We can get you back to a functioning level and that’s the best we could do. What did that mean, “A functioning level”? Sounded like a death sentence to me at the time. You mean I have to live with this for the rest of my life? Funny question to ask considering I had really already been living with mental illness (on a smaller scale) all my life. Was this my reality?

My horror really started when I was sixteen and in high school. It was midterm exams and I was feeling very anxious,worried and full of panic. Then one day I just collapsed. I couldn’t function anymore; I gave up on life. My days were spent asleep, whether in bed or on the sofa. I remember going to the doctor and receiving no help whatsoever. “We can’t give antidepressants to teenagers”,were his words and sent me home to fight this raging war all alone. Very few back then, knew much about depression and anxiety, let alone knowing how to deal with it. I felt I was left to die alone. My friends from school didn’t come near, maybe they thought I was contagious. My only support was my family and I am so thankful for that. Over time I gradually got a little better each day. In the 80’s we were so uneducated about mental illness and the walls of stigma were so high. It was almost if you ignored it long enough it would go away. But all through my life, I know now, I battled depression and anxiety. And I can openly speak the words and not have to hide in shame.

When I was “formally” diagnosed just three years ago; that I suffer from major depression and anxiety disorder. Does that make me feel any better? Somewhat. Now I have a name on what I’ve been battling most of my life. My nightmare now became a reality. I realize now I have a disability. Not a one confined to a wheelchair but a one that confined me to my broken mind.

Now it’s learning how to accept my disability and learn to live with my “thorn in the flesh”. I have come such a long way, my doctor says, I am now in the recovery stage of illness. But then I think, how can I be in recovery when there is no cure? Well, I have to get back to a functioning level and learn to control my symptoms and not the other way around. Learning to be the best that I can be and teaching my brain that it’s going to be ok. That is what recovery is all about; learning to live with my challenges and obstacles despite my illness. The reality is that, just like any other disability, I will have to find a different path that leads to a somewhat “normal” life.

It might appear that all I am saying is negative, but that is the reality of this illness. Negativity and depression coexist. It’s finding the positivity in this illness that leads you to the road to recovery. It’s finding the sunshine that’s hiding behind the clouds. Because I have a mental illness doesn’t mean I still can’t have meaning and purpose in my life. I am not my illness. Vitor Frankl in his book eluded to this when he said, “that life holds a potential meaning under any conditions, even the most miserable ones. I therefore felt responsible for writing down what I had gone through, for I thought it might be helpful to people who are prone to despair.” He wrote this after being freed from his hellish existence in a Nazi concentration camp. So I too, feel I have to write the truth about my illness, even if it is negative because that is the truth of my hellish existence; when I was trapped in my “concentration camp”. The memories of those most awful days will probably always be trapped inside my mind, but that’s all they are; memories and they can’t harm or hurt me anymore. It’s my life mission to free myself and others from the depths of despair that this illness brings.

The reality right at this moment in time is that I am not cured. I am doing a lot better. Because I am not fully recovered doesn’t mean that others can’t and it doesn’t mean that I will never be cured. But the reality remains; I am certainly not where I need to be. I still have a few more baby steps to make before I can walk. And that is REALITY; whether I like it or not. The reality is; this illness sucks!

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Lauren’s Hope of Walking

i..Lauren as seen Dr Farmer three times, each time we were told she was not a good candidate yet. The last time we were there he told us he would see her when she’s five, unless we thought she was stronger and more ready for the surgery before that time. So we just sent an email to him requesting that he would see her sooner because Lauren is stronger and that her window of opportunity for her to want to walk is closing. So pray with us that Lauren will get to have the surgery and that it will be successful.Doctors at Montreal’s Shriners and Children’s hospitals are spreading the word that a specialized surgery for cerebral palsy patients that can help relieve some of the spasticity of the condition is offered in Canada.
Dr. Jean-Pierre Farmer, the chief of neurosurgery at Montreal’s Children’s Hospital, is one of the few doctors in Canada who can perform the surgery, which is called selective dorsal rhizotomy, or SDR.

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The procedure can help alleviate some of the symptoms of cerebral palsy, particularly the muscle stiffness that can lead to chronic pain, exhaustion, and disability.
Cerebral palsy affects roughly 2.5 out of every 1,000 babies born in Canada every year, and is caused by abnormal brain development or a brain injury during pregnancy or birth. The spasticity caused by CP makes it difficult or impossible for children to move their limbs in isolation. Those who do learn to walk often do so on their tiptoes with their knees close together so that they need a wheelchair or braces to walk.
The SDR procedure involves exposing the nerves in the spinal column and cutting those nerve fibres that cause muscle tightness using electrical pulses. The nerves that properly control movement are left intact.
If all goes well, and all the affected fibres are cut, it can be possible for children with CP to learn to walk independently.

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I Love Mental Illness and Cerebral Palsy

Both Mental Illness and Cerebral Palsy have taught me so much about life. I really wish that I was never introduced to either. Because life would have been fine without it. But that’s not the way it works; we can’t pick and choose what life throws in our laps. We just have to learn to accept and endure through whatever life throws at us. Does that mean we have to love or hate whatever that might be?

It has taught me that I am so not in control of what life throws my way. There are days when life is spinning out of control. Mental Illness and Cerebral Palsy are much bigger then me. I am only human, it forced me to look deeper inside for something more, a strength that is greater then myself. That we cannot do this in our own human strength but we need a spiritual strength that is much greater. All of us, no matter who we are or what we believe; when it comes down to the crunch, what or who do we turn to? I believe that would be God. We can’t turn to our bank accounts, our careers, our possessions or any earthly being. When all is said and done all we really have is God. And that is the greatest answer to any of life’s questions. So therefore I love mental illness and cerebral palsy for that reason; it made me look deeper spiritually, that I probably would not have done otherwise.

Both our disorders have opened my eyes to a “new normal”. All our lives have been affected and changed in one way or another. We are learning and accepting both our life changing diagnoses. And trying to make it as “normal” as possible. We as a family still grieve the losses that comes with such life altering illnesses. Life as we knew it will never be the same. But we have to find the sunshine in this; our new normal. And that will not be easy but we will do it; one moment,one hour, one day at a time. So it as taught me tolerance of the here and now. This is a new chapter in the book of our lives. Nothing stays the same forever.

I also love mental illness and cerebral palsy because it as helped me to relate to others who are experiencing the same pain and struggles. My compassion, love and concern for others have certainly deepened because of what these disorders have taught me.

But in all honesty; can this be the truth? Can I truly love these illnesses? To some degree yes but to another,no. Can I truthfully say I love the mental illness I have and Lauren’s cerebral palsy? The truth is; I hate the mental illness I have. I hate Lauren’s cerebral palsy. After all I am only human and hate is an emotion that we all possess. Yes I have learned and grown so much but bottom line; I hate it! That is the truth:”…and the truth shall set you free!”

I just visited my acupuncturist and thought I’d get her opinion on this topic of hate and love. Is hate an emotion? Can we love and hate something at the same time? I think we concluded that hate is an emotion because love is an emotion and hate is the opposite of love. And we can love and hate at the same time. If you disagree, you’ll have to take it up with her, lol. But I love and hate mental illness and cerebral palsy at the same time.

On the flip side; how can I love something that as taken away so much from us and have changed our lives so drastically? I have lost my job, my sense of being a provider, my self confidence, self worth and the list goes on. So yes, I hate it for those reasons. Then there’s Lauren. The suffering, the senselessness, the freedom to live a “normal life” as been taken away from her. Just last night I was getting her ready for bed and I was massaging an essential oil combination that Lisa developed to help sooth her muscles. When she said,”Daddy I don’t want anymore Jesus Oil (we told her when we apply this oil, Jesus was going to make her better, so she calls it her Jesus oil). So I said,”why not my darling?” And she looked up at me and said,”because I don’t want to walk anymore?” My heart nearly broke. I said, “why don’t you want to walk anymore my love?” And she looked up at me and said,”Because it hurts too much.” Through my tears she said, “you ok Daddy”? I lied and said, “Daddy’s just fine”. When inside I was saying, “I hate you to her cerebral palsy.”

I can’t honestly say I love it, I do love the positive outcomes that have come with our disorders. But sadly to say with the positives come the harsh realities. The sleepless nights, the long periods of screaming, the wanting to walk like Bruddy, the constant 24/7 care that nobody else sees. We have no choice but to cry out to God! HELP!
j

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Diversity in Mental Illness and Cerebral Palsy

I was sitting in Lauren’s psychologist’ office; stearing at the four walls as they were closing in upon me. But then my eyes fell on some words on the wall that spoke volumes to me. They were; “…our differences are not something to be tolerated, they are something to be celebrated”.

That got me thinking (that could be dangerous) about both our differences as compared to others who cannot relate to either of our disabilities. “Diversity meaning any dimension that can be used to differentiate groups and people from one another”. Mine being major depression and anxiety disorder. And Lauren’s being spastic quadriplegia cerebral palsy. Both being very diverse, yet in some ways a lot alike.

Both being alike in that; both disorders stem from the brain. CP being caused by brain injury or malformation that occurred just before or immediately after Lauren’s birth. And mine most likely from a genetic component which more than likely I inherited through birth.

We will both have to face our lives with a few more challenges than those without. But I believe the majority, if not all of us, have one challenge of one kind or another. Whether that being mentally or physically. My illness being a mood disorder, interferes with my ability to live a “happy” life. A one that I have to live above, inspite of the way I may feel or my mood may be. Just as Lauren will have to overcome so many obstacles and challenges. But she will not let her disability stop her from doing what she wants to do; she’ll just have to work a little harder than the rest.

But our differences will not define who we are. I am not my mental illness, nor is Lauren defined by her CP. We are much more than that. Life may be just a little more of a struggle for us but it will not stop us from living life to the best of our ability. It will certainly make us stronger people; despite our differences.

We will celebrate our differences and not tolerate them. Our differences are what makes us unique and special people. I have won more wars within me then most can only imagine. Lauren as become a celebrity around here, she is a princess and an inspiration to all who meet her. Our illnesses have impacted who we are but have not determined who we have become. And that we will celebrate, despite our diversity.

So, if you feel different, look different and are different; don’t look at it as a bad thing. It makes you the person you are, it opens up an whole new world that you would have never known otherwise. Do I wish we were both “normal”? No, because that would be living in a fantasy land not reality. All of us are diverse and let’s celebrate that. Our differences are what makes us all special and unique; “we are fearfully and wonderfully made”. And don’t let anyone tell you otherwise!

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One of those days!!!

Everyone is entitled to have ‘one of those days’. I’m having mine… Reality is often the cruelest…some will see these pics and say, “how cute is that? Daddy holding her lovingly.” And he is. The reality is, Lauren can’t play with her friends unless there is an adult present to help her participate in the play as much as possible. Today, I find this to be so unfair and my heart is saying, “this is not ok!” Lauren thinks she can do whatever the others are doing. How do you respond to this? I want her to think that way, yet, reality cuts in. I keep praying for wisdom to someday make her thoughts become her reality. It’s just not so today…Mommy

I didn’t know Lisa was taking these pictures but while I was holding Lauren, I was doing therapy at the same time and thinking in my mind; there’s something not fair about this picture. God help us and strengthen us for the days ahead. It doesn’t get any easier.