Why being a mom scares me.

As we head towards mother’s day most of us are thinking about our mothers being a mother and the general role of motherhood.  Having children is one of those amazing, wonderful experiences that bring so much joy and fulfilment yet for me I confess I find it completely scary and totally frightening.

From the moment I knew I was pregnant the fear for my child struck, was I eating the right food, wearing the right shoes, walking the right way. This tiny life growing inside me was the most precious thing in the whole word looking back I really feel for my husband it was at this point that he alone stopped being my world.

God blessed me with four amazing daughters and each day I am grateful for this but many times I feel unworthy of such honour and responsibility. Nothing prepares you for the immense feeling of protection you have towards your children. You would do all that you could to keep them safe, keep them happy.

I have to admit I love being a mom, I never believed that I would. I imagined I would get bored and downtrodden by the daily demands. Yet for me the reality is far from it, I love it. Even the boring things like ironing school uniforms I love knowing they are going to look smart the next day. Don’t get me wrong if I could get out of housework and laundry I would but come on I’m human after all.

As we approach mothering Sunday my heart is full of pain, instead of looking forward to celebrating motherhood I feel like I have failed.

One of my daughters won’t be with me on this special day, I couldn’t keep her safe, protect her from the evilness of Rett Syndrome. This is what consumes my mind.

I miss Livvy so much that each day I fight a battle not to allow the pain to consume me completely. I wake up and just like my makeup I apply the big fake smile to get me through the day. I want my girls to know that it’s ok to be happy again to feel joy experience laughter as this is what Livvy would want for us all.

Yet I cannot shake the feeling of loss the feeling of” if only”. 

My heart aches my soul cries out for my missing baby yet I have to pretend for my other three, they need a mother who is happy and excited by their special cards and handmade gifts. That’s what being a mom is at times. The smile that hides the pain, I’m sure most of us have had to do this in life, bills are worrying us, family problems yet we smile and hide the pain the worry from our children.

As you see there is a lot to being a parent and it’s these moments that frighten me, all I can do is pray that I’m being the best that I can be.

It just disappears

Tonight as we sleep the clocks play a evil trick on us. They lose an hour it disappears into the spear of nothingness not to be found until wintertime comes to visit again.

How dare it? Does it realise that I need every spare minute let alone losing a whole hour.

Each new year I promise myself that I will learn the art of organisation but I’ve finally come to the conclusion the more organised I am the more tired I become.

How does that work? It simple, I get organised, I get prepared. I finish my projects get paperwork completed. I get excited by the the hours I have freed.

Sounds good so far, it is. I look forward to those saved hours then I make my mistake I answer the phone, raise my hand, reply to a email.

Agreeing, offering myself up. “of course I can do that,” “yes I have some free time”.

Goodbye my hours of rest.

I’m my own worst enemy. Yet I feel joy in helping others. Going that extra step. Supporting, caring, loving. That’s who I am. Who I wish to be.

Yet when the seasons change and that hour disappears I do groan when the day starts that bit earlier. Yes I get weary but I turn to my strength. The one who lifts me when I am weak. Who picks me up when I stumble.

I know that ….

” I can do everything through him who gives me strength.”
(Philippians 4:13, NIV)

I trust ….

“I am the LORD, the God of all mankind. Is anything too hard for me?
(Jeremiah 32:27, NIV)

A little piece of Heaven

Let me introduce you to one of my favourite places in the world.

It’s not a gigantic place; it’s not full of bright lights and fancy things.

For me it’s a small piece of heaven, for my children it has been a playground where they have grown up and filled with love laughter and challenge.

Let me introduce The Elisabeth Svendsen Trust for Children and Donkeys (EST) Birmingham.

This is place has been like a second home to us all. The staff there are like family, we have laughed together we have cried together. My memories fill up every inch of the Walls.

Livvy loved the donkeys. It was here at EST she met her match in the stubborn instructor who Livvy loved with all her heart. Watching her tease by pretending to arch her back still makes me smile today. Hearing the “Livvy get your back straight” echo across the ring and the little giggle that followed still warms my heart.

The doctor once told us that Livvy would probably never walk again yet it was here in at the trust that Livvy independently walked across the room too impatient for her donkey ride. It was also due to the physiotherapy she received here at the sanctuary that she had the strength to do so.

So as you can imagine I love this place and I know I’m not alone. Each week EST brings therapy to children with special needs via six centres in the UK. Along with the therapy they give strength, fun and real opportunity to spend quality time with your children. Siblings are also welcomed with open arms. Holiday clubs, weekend visits. They ask for nothing yet give so much.

The centres solely rely on fundraising and donations, yet like most in the current financial climate they are struggling,

So as one who loves these centres with a passion I want to ask you kindly if there is anything you can do to help keep this centres providing the therapy and joy to children with special needs please do so they desperately need our help.

You kindness will be appreciated by all.

Feelings not Facts

I was reading a chapter of Rick Warrens “The purpose driven life” last night when I was struck by the statement. “Focus on their feelings not the facts”. This to me was very profound.

How many times do we go into a conflict knowing that we are right that we have the facts to back us up. Going in for the kill not realising that at times the facts don’t really matter. How the person is feeling should be more where our heart is in the situation.

I confess that at times I have got into a right rage at my husband over something he has done. I have had my facts at the ready each one like a knife to thrust into his heart. Anger has controlled my heart, controlled my tongue. The self rightness I have taken from having facts in my arsenal has taken me to a place where the enemy has jumped with joy. Nothing is as blind as anger.

Psalm 73;21:22

21 When my heart was grieved

  and my spirit embittered,

22 I was senseless and ignorant;

  I was a brute beast before you.

How in the ignorance of my rage I have looked at my husband and seen the damage from my words. At times he knows he has done wrong yet the truth is I haven’t asked him why. I never looked to see the bigger picture.

Sometimes we have all known what is right yet have chosen to do something different. Maybe what is right for us wouldn’t be right for others. Taking a loss so that others may gain! You can’t see these truths in the facts only in the feelings.

I must admit I felt God talking to my heart with these verses reminding me that life isn’t always black and White it’s a multitude of amazing and wondrous colours. Yes at times they may not match but that’s sometimes more beautiful.

 Do not be quickly provoked in your spirit, for anger resides in the lap of fools.

(Ecclesiastes 7:9, NIV)

  The LORD is gracious and compassionate; slow to anger and rich in love.

(Psalms 145:8, NIV)

I give thanks that even in my ignorance the Lord offers me forgiveness!

 You are forgiving and good, O Lord, abounding in love to all who call to you.

(Psalms 86:5, NIV)

Livvy’s Smile Wins an Award

So today is the day, the secret is out. Over at my alter ego Livvy’s Smile I can share our amazing news. We are the proud winners of Victorinox Family project.

Along with two other amazing projects Livvy’s Smile have each been awarded an amazing £10,000, this money means so much to us. It will allow us to move forward with some wonderful projects creating memories and smiles for disabled children and their families.

Friday we were invited up to London to Victorinox’s flagship store in New Bond Street for the award giving. It was a wonderful day; we were treated lovely by the Victorinox staff and had the honour of meeting Veronika Elsener this kind warm lady is a member of Victorinox founding family.

We were also lucky to meet up with the other two families that had won this award alongside us. Both families have amazing projects and I am hoping we all manage to stay in touch.

I cannot put into words the excitement and joy I feel at winning this award, my head and my heart has been full of many ideas which this incredible amount of money will help bring into a reality.

Please check out the press coverage of this award at The Guardian and join us over Livvy’s Smile as we celebrate our great news.

My girl's getting ready for the train trip to London

 

Our Inspiration

It’s what I have, Not who I am.

I don’t write often about my illness I believe it’s one of those things I have,  yet  I refuse to allow it to define who am I or the life I lead. Yet at times it takes victory over my will.

How do you explain to someone you are in constant pain. That your body aches so deep inside at times you feel it is tearing at your soul.

I try to follow the philosophy of no hate yet I hate the genetic makeup of my body which has become the breeding ground for my illness.

Doctors cannot even agree or decide on a name for the evil in my body. To some it’s Myalgic Encephalopathy to others it’s Chronic Fatigue Syndrome. To me its evil simple as that!

This illness I do call Myalgic Encephalopathy (M.E) has taken so much from me. My love to dance, my love of sport. All lost in the frustration the pain.

Some days are better than others and I have learned the value of the good days. I am also aware that others have it so much worse. Yet at times I just want to scream. As I lie awake into the early hours of the morning praying for sleep yet wide awake from pain it is then the will to smile with bravery is lost. It is then the tears will fall. In the privacy of the sleeping house I question God. The whys, the how’s come to invade my mind.

I want to believe that all things have a purpose but this illness leaves me at a lost. What purpose does it have?

Yes I have learned the value of time, yes I have learned the need to slow down and smell the flowers. But still I look at what is lost. How I wish I could run around the woods with my daughters, how I wish I could lace up boots and join them on the ice. How I wish….

Yes I know I have a lot to be grateful for, the slowing of my body has enforced the quickening of my mind. The words I never had time to write are my escape from the endless nights of pain.

Yes I made not be able to run with my girls but I can spend time in cuddles or enjoying the pleasure of sharing a good book.

Yes life is different, but can I see the blessings of it.

While in a dream I would wake up tomorrow free from pain I know that whatever tomorrow brings my illness is what I have, not who I am.

Should we try to imagine God

Today I sat and listened to a service where the Pastor was talking about how we see God.

As she spoke it struck me that this is one of the problems within faiths, religions. We all try and picture God in our own way. Yet I believe the reality is that we cannot picture God. The mere concept is to great. God is way more than the human mind can ever imagine.

Our God is a loving God who deserves our praise our respect. Yet to try and fit him into a someone, a something is an insult. God is EVERYTHING.

As Christians we are so lucky we have Jesus. God gave his only son not only to sacrifice for our sins but he gave us someone to relate to, he became human so that we could love, respect something we could understand. Jesus gave us so much in his teachings, his example,his death.

I personally don’t try to imagine God I feel the limits of my mind would limit his greatness. I just hold tight to his everlasting love and the faith that eternity will bring the answers to my searching soul.

“Ah, Sovereign LORD, you have made the heavens and the earth by your great power and outstretched arm. Nothing is too hard for you.
(Jeremiah 32:17, NIV)

What do you say???

What do you say to a little girl who doesn’t want her tenth birthday to come?

It isn’t right, she should be full of excitement as she enters double figures. Yet all she can think of is that her big sister didn’t live to ten.

Her head is full of questions she is struggling to answer. To be honest I have no answers.

Will Livvy still be my big sister when I’m ten?

Why didn’t Livvy get to ten?

I tell her of heavenly birthday parties with as much cake as you could ever imagine. I remind her of Livvy’s freedom of the awful evilness of Rett syndrome, how her heavenly birthdays are free from seizures and pain.

Comfort is little for a little girl who misses her big sister so much. Talking about her today she told that me that sometimes it hurts to breathe, hurts to remember. How I know those feelings!

Yet I don’t want them for my nearly ten year old. I want the only thing to be worrying her about her birthday is what outfit to wear.

Part of me wishes I could take her away, throw her a big party but the reality of life and bills to pay don’t allow me to do this.

I just have to pray that my hugs, my love will be enough to make a hard day the special day it should be.

Light after darkness

Isn’t life amazing, I have gone from feeling so low to being full of energy and new direction.

Maybe it was just the flu getting me down. Late post Christmas blues. I haven’t a clue I’m just so glad to see back of those low deflating thoughts and feelings.

So much has happened in the last day or so. Great news for Livvy’s Smile watch this space some incredible news coming this way!!

I’ve also worked my way through a personal minefield. After discussions with my children we are going to widen ourselves our places of worship our personal service and learning too.

I’ve realised that life is a journey there are ups and downs. I have learned that at times I will feel in dark places yet to stay strong and remind myself that like the night day will follow so will my light.