Month: January 2018

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This Recovering Mental Illness

J                                                       The day is almost over, night settles in bringing with it it’s darkness. But the day was a beautiful day filled with sunshine and bitter coldness. The week itself felt like the Battle of Armageddon. Along with all the everyday battles and struggles, my war was raging on the inside. I’m not referring to a spiritual war; evil against good, but a war between sad and happy, abnormal and normal, unfulfilled and fulfilled, worthless and worthy, hopeless and hopeful. Where do I stop, when will it stop?

When my doctor told me, almost six years ago, that I had an incurable illness, a long uphill climb and the likelihood of returning to work was a long  way down the road. I thought he was nuts (no pun intended). He told me to apply for Canada Pension Disability. Why would I need to do that, I’ll be better in a couple of months? I guess I have to swallow my pride once again and  admit that he was right and I was way off base. Because after the week that I just endured, I realize this ugly disease still ravishes my mind and body and can attack at any moment; even after six years.

Trying to accept the reality of what is, overwhelms me like a raging tsunami. I feel like the Israelites who wandered in  the desert for forty years and not unlike the Israelites, I probably do my share of questioning, grumbling and complaining. Why God have you brought me into this desert to die? I am still searching for that purpose, that reason why I am where I am at this stage in my life. This is so far from my plans (our plans). I would have never said in a million years.

But who am I? Why not me? There are no respect of persons. It rains on the just and the unjust. I just feel there are holes in my umbrella and I’m soaking wet. I long for the rain to hold up and the sun to break through the clouds. His grace is sufficient for me, or is it? There are days I have my doubts but that’s not His fault. This road sure isn’t perfectly straight and flat but many are the twists, turns and pot holes. I just pray everyday that He’ll guide us over this road of life and one day will bring us safely to our destination.

I guess after suffering and fighting this illness for so long, when I still have bad days or weeks; still makes me nervous. I should be better by now, is my wishful thinking. But my illness was very serious and therefore more complex the recovery and that doesn’t happen overnight. I was hoping by now that my recovery would be more advanced, that I would be further along on my healing journey. But I have no control over what will be, I only hope for the best.

 

 

 

 

 

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Come Morning

Morning comes. But where’s the light, darkness surrounds my being. I search in the darkness but I can’t find the light. I stumble and fall but I have to get up again, my life depends on it. But God I can’t do this again today, the darkness is so overwhelming, the weight is so heavy; I can’t carry it anymore. I cry out to you to just take it away or just let me die; but I want to live, really live.

I just want to hide and crawl inside myself and never come out. How could I be feeling this way today? Is my life just too overwhelming, too complicated, or is my illness consuming every ounce of strength out of this body of mine? Am I just too exhausted, too tired of fighting, too tired of life? But something is about to break, and I hope it’s not me. Maybe there’s going to be a break in the darkness, a crack, a flicker of light, hope, peace, calm is flowing through the fog.

There’s nothing I want more then to be real, not have to hide, just be me; no strings attached. Yes I have a mental illness: not a weakness, not a character flaw, not a spiritual defect; but an illness. And yes I still struggle today, not by choice but it is what it is. If I had a physical illness I would not feel the pressure from others to heal myself but would be accepted, understood and looked upon with concern. But because it’s a mental illness , the stigma, the shame, the wanting to isolate and not talk about it or share it with others; still overwhelms my thoughts, making me feel misunderstood, different then others and just not belonging.

This morning I did not want to talk to anyone or share how I was really feeling. My mind was filled with thoughts of ‘people are tired of hearing’, ‘if you tell, others will judge you and say you’re weak’. But you know what? I really don’t care what others think anymore. If they don’t understand maybe they’re the one with the character flaw; not me. If they walked in my shoes this morning; how would they react? Would they run and hide? Be too ashamed of the way they were really feeling? So I won’t run and hide anymore. If I’m having a rough day, I will share it with someone who cares, even when my mind says not too. Because if I’m going to survive this illness, speaking out is one of the best forms of healing I could find.

I’m always searching for analogies of how to explain or express what depression is for those who are suffering and don’t know what’s going on, because it can be very scary. So understanding what depression is helps to take away some of it’s power, because this morning my serotonin levels must be on empty. Serotonin is the chemical found in your brain that is referred to as the ‘feel good hormone’. And if your body is not producing enough serotonin then you will not feel so good, finding happiness, doesn’t come natural, it’s hard work and exhausting. It’s that simple! The analogy I found the other day, and it makes total sense to me is this; “There’s no difference between my brain not being able to make correct levels of serotonin and my pancreas not being able to make the right amounts of insulin”. So if your serotonin levels are low, which we know in the morning they are at their lowest , then you won’t be feeling so well. But as your day progresses you should feel a little better.

Then night falls and I long for my escape from reality. The comfort of my bed seems to bring that reprieve that I’ve been longing for all day. Maybe sleep will bring peace and calm to my troubled mind. There has to be light at the end of that tunnel; I’ve seen it before and I will see it again.The truth is I’m not feeling strong today, I’m not feeling that I have it all together today; but tomorrow brings the hope that things will feel better in the morning. So as I sit here in my office at the end of a rough day, I pray for the peace of God to cover me and my family; that’s my only hope!

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Lauren’s Missed Opportunity?

After recent events pertaining to Lauren’s latest medical update (please refer to the blog entitled, ‘A Detour in Lauren’s Journey’) it took some time for us as parents to analyze and digest the information that we had received. We are not parents to accept everything as “hook, line and sinker.” The news we received will forever change the course of Lauren’s life and journey. And we are not expecting everyone to know and understand what that feels like unless you have walked the path we are travelling. But I believe Lauren as been done an injustice. Is anyone to blame? You tell me.

Lauren as already visited the Children’s Shriners Hospital in Montreal, three times.  Each time was for an assessment to see if she was a good candidate for the ‘selective dorsal rhizotomy’  which would release some of the spasticity and tone i her muscles which would allow her to have a chance at some form of mobility. Three times we were sent home.

In order to be even considered for this surgery, Lauren’s hips were required to be in good condition, which they weren’t. So in 2016 she underwent a  reconstructive hip surgery (Osteotomy) to correct her hip. This left her leg 1.5 cm shorter then the other. At that time the other hip was out of socket a little but not bad enough for surgery and they were hoping that maybe it would correct itself. This was performed at the Janeway Children’s Hospital in St.John’s.

The reasoning for the corrected surgery of the left hip to be a failure was due to the fact that her muscles were so tight (so spastic) that they pulled the hip out of socket  and the ‘good hip’ was now 50% out of socket as well.  Now she was definitely not going to be considered for the rhizotomy surgery. Our hopes crushed!

You may be wondering, where am I going with this? What’s your point? The point is this; if the rhizotomy surgery was done on our last visit (November 2017) and the tightness, the spasticity of the muscles surrounding the hip were released, they ‘may’ not have been pulled out of socket like they are today. And Lauren’s hip surgery would not have been in vain, she would not have one leg shorter then the other (for now, no reason) and she would have  at least a chance of walking or at least a form of some mobility.

So to sum it up, we are discouraged, hurt, angry and left with nothing but questions and what ifs’.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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A Detour In Lauren’s Journey

The doctor’s voice pierced our ears with news we did not want to hear. News that we were not expecting to hear but here he was saying theses awful, hopeless words. It was Lauren’s week of intense therapy that just so happen to fall on the same week has her Cerebral Palsy Clinic, this is where we meet with all her team; the orthopedic surgeon, neurologist, pediatrician and the rehabilitation team. We sort of had ourselves somewhat prepared for the week because we knew some things weren’t going right with Lauren. As it is with Cerebral Palsy, every day is different and each  day brings new challenges. 

To begin the day we sat in the assessment room waiting for Lauren’s Orthopedic Surgeon to enter the room, wanting to lock the door and not have to listen to what he was going to say. We suspected that something wasn’t right with Lauren’s already troubled hip, she said  ‘it hurt’. She already  had reconstructive surgery done on her left hip, but we were expecting the problem was with her partially dislocated right hip. The doctor entered and the look on his face was not good. He knew what our aim and goal was for Lauren; which was a rhizotomy  surgery in Montreal and both hips were required to be in perfect working order. The rhizotomy surgery was our one and only earthly hope of Lauren ever having any form of mobility outside a wheelchair.  We looked at him and said, “you have bad news”.  He did not deny it, but why couldn’t he, it was what we wanted; to be wrong. 

He looked at us with a defeated, hopeless and helpless look and said, “the left hip that she had repaired is totally out of socket again.” The left hip?  That one was repaired, we thought the pain she was complaining in was from the hip that wasn’t done. And he said,”the right hip is 50% out of socket.” So where does that leave us; we need two good hips to even be considered for the rhizotomy in Montreal. And now neither hip is in good standing. “There is nothing else we can do here at the Janeway for Lauren, get her to the Shriners Hospital as soon as possible.” From his standpoint Lauren would be confined to a wheelchair and we would need to start accepting that fact. Our hopes were crushed, the only hope we had was now gone. We cried our way through the process because here we were looking at a little four year old girl who’s greatest hope was to walk. “But I want to walk Mommy”, “But I want to walk Daddy”, “It hurts”, “I want to do it”.

We just wanted to go home, but first we had to see the Neurologist because her seizures were still not under control. Nothing was working, medication was only making her sleep more often. So we waited for the neurologist to plead for help to stop the seizures. Our fear with her having so many seizures was that more brain damage would be done and that we did not want to happen. Lauren is so intelligent and bright and we want to keep it that way.  Her neurologist said, “there is no quick fix, no cure, just trial and error.” So now we try another medication and “please God” this would and will work.

Lauren’s physiotherapist came in while we were preparing to leave and we told her we just needed to go home and to cancel the remaining appointments for the week. We thank all the team for their concern and support, they really do care and love Lauren. But we just had to go home and let all of this just sink in and deal with the hurt and feeling of loss and hopelessness. There is a grieving process that goes along with this traumatic news.

We arrived home and just sat and looked at each other; defeated! Once the initial shock had worn off, it was, “okay what do we do next?” Get in contact with the Shriners  Hospital in Montreal. So Lisa called Lauren’s doctor there and left a message to get back to us as soon as possible. While Lisa was doing this, I was sitting on the sofa playing with Lauren, when my phone rang. Hello, the man said, my daughter received a text today about a little girl who the Janeway had given some bad news and that she needed to get to the Shriner’s Children’s Hospital in Montreal as soon as possible. He said, “is any of this making any sense to you?” To which I said , “yes, I sent the text to eight of my siblings today to inform them of our devastating news concerning Lauren, who is our four years old little girl who has cerebral palsy. Well he said, “this is no coincidence, but divine intervention, because I’m a Shriner and I will do whatever I can to get your little girl to Montreal. My heart leaped within me, when I felt so low, angry and no hope in sight; God had sent us a sign that He is right by our side and it’s going to be okay. This was no coincidence. What are the chances that this text and I have no idea how it could have been sent to her; I only sent eight texts and they were all to my siblings, so how could this girl, who’s father just so happened to be a Shriner from Gander, receive my text, it was nothing short of a miracle. And my texts were all out of province. God will move, He will intervene.

So after such a stressful and defeating day, God had intervened once again. Sometimes it’s in the little things, when our faith was so small and we had more questions than answers ; God was still working on our behalf. So if you are reading this and you are discouraged, hurt, going through the storm of your life, in the valley of despair; God is there, He will intervene, just never give up! “He may be four days late but He is still on time.”