Friday, 31 October 2014

Me and Mine: October

I do love this little family of mine.

The events of the past few days only heighten that sense of gratefulness. Every giggle. Every special moment. Every quirky conversation and knowing look.

There are things I wish could be different for our family. Sometimes I can't help but wish it wasn't our family that had to tread this path.

But I also know that these past eighteen months have made our little unit stronger. Have made Dave and I stronger as a couple. Have made the girls sibling bond stronger. Have tied all four of us together more tightly. An appreciation and thankfulness that perhaps might not otherwise be there.

And then I realise that actually, I wouldn't change anything about this little family of mine for the world. Or even a million worlds.

These are my special people. My loves. My little family. Me and Mine... in October.




dear beautiful

Me and Mine in...

Thursday, 30 October 2014

Fog...

We have arrived in Cornwall. Escaped to friends. Escaped from the news of the past few days. Beautiful scenery - stunning views that roll on and on - but only visible through a fog that seems to hover. Not dissimilar to where my own heart has been these last 48 hours. Life is beautiful. We are so blessed. And yet ever hovering is this mist that seems to have thickened a little.

It will pass. I know it will. Or at least I will notice it less. We've been in foggier places before. At times so dense I could barely make out the hope beyond two steps in front of me. Last June. When everything seemed hopeless and hard. When we thought we might lose our little girl. When we wondered if our lives would ever resemble normality again. And really, nothing has changed since Monday. Except that a little slice of hope has disappeared.

And then I remember to be thankful. Thankful that my hope isn't placed in what Doctors say, or what Heidi's arteries do.

But rather in someone. Someone who will not fail me. Even when the fog is dense, and the darkness thick... He will guide me through. One step at a time. Gently and firmly.

And He can.

Because He walked the road through the thickest fog of all.

When Jesus spoke again to the people, he said, "I am the light of the world. Whoever follows me will never walk in darkness, but will have the light of life."
John 8:12 






Tuesday, 28 October 2014

Answers...

Its been an emotional day... walking the streets around the Brompton brings back those old emotions... the highs and the lows. The elation of good news. The devastation of bad.

Today has been no different.

We saw the power of prayer unfolding before our eyes as we went through the stages of the routine that is becoming familiar. Heidi napped as we walked to the hospital and miraculously stayed asleep as we entered the building. We had to wake her for her height and weight checks. Amazingly, she sat happily and lay happily as they did their measurements. Considering she had been abruptly awoken and immediately in, this was a miracle in itself.

The ECG went without a hitch. She sat on my lap, covered in sticky plasters and wires, looking curiously down at the mass of cables coming off her body. Quiet as a mouse, she said a simple "thank you" to the technician as we left the room.

And then to the Echo. We had come armed with snacks, ready for the battle to ensue with our 19 month old as we forced her to lay still for 15-20 minutes. We were in total shock as we saw people's prayers being answered before our eyes. Heidi lay down obediently when asked, and lay staring around her as the sonographer carried out her investigation. No snacks were necessary (although we did give her a couple of grapes at the end as we had them). She lay beautifully. Still. Quiet. Contented and Curious. I sat and thought "whatever the outcome of this, look at this beautiful little girl - we are so blessed" God was answering our prayers before our eyes.



Perhaps it was the smoothness of everything, perhaps the contented nature of Heidi, perhaps the "it all looks good" from the sonographer as we went out the door. I don't know... but I felt such peace, and hope.

And as we entered the Registrar's room for the results, 20 minutes later, my heart raced and I took a deep breath as we walked in.

The truth became apparent in his opening questions.

"How is Heidi doing?"
"Does she seem happy and healthy?"
"Is she ever breathless after exercise?"
Wait a minute... I thought... why is he asking this if she's all better?

He wouldn't be asking this if she was better.

"Heidi's arteries actually remain pretty much unchanged from last time we saw you..."

Pause.

"I can see from your face that wasn't the news you were hoping to hear"


I was stunned. Really? Could this be? Could this really be? Was the Lord really going to allow us to keep walking this road? To take our hope away?

I gulped back the emotion and allowed Dave to speak for a couple of minutes. I wanted answers. I needed to understand. The Registrar was helpful and kind, but as a natural optimist, bad news makes me suspicious... and we didn't know him. He didn't know us. Didn't know Heidi. Didn't know our case. After a short, and helpful, conversation, we decided to speak to James, our Cardiac Nurse. A familiar face. Someone who knew Heidi. Someone who could sit down and explain all of it to us.

And he did. And God used James to speak peace back into this knocked about, anxious, weary-worn heart. He gave us time... he sat and worked through every question. He patiently talked us through the measurements - May, June, July, January and now and showed us on diagrams what was happening in Heidi's heart.

Her arteries remain unchanged. This means that if they heal now, it will be miraculous. As far as the Medics are concerned. Heidi's arteries have healed as much as they are going to.

This is hard to swallow... but it is also a miracle in itself when you consider the "impressive aneurysms" that had formed on her arteries last June are now "mild, uniform dilatations"... she is in a much safer place than she was last year and although the medication is still absolutely necessary, she is much lower risk than she was.


This verdict means one of two scenarios for our Heidi - either this is something she will spend her life battling. It will have little impact on the everyday, other than the daily necessity of medication. But it will always be there, hovering in the background. OR, she will grow into them. And this is now the hope we cling to. The fact they have stayed the same size despite her significant growth since last January, is positive. It means that, given time, and if they continue to stay the same, she will hopefully grow into them in the next couple of years or so.

Of course, life with medication is really no issue. The meds protect Heidi, she takes them happily and doesn't object, so really its not the end of the world. Except that the side effects of the meds mean that any prolonged temperature is risky for her. And the enemies of chicken pox and flu lurk through the winter and spring months, bringing fear to my heart.

This past year, Heidi withdrew from social settings for six months while chicken pox ran riot round our friendship circles. The prospect of a future like this for her was what caused me to nearly break down at the news.

And yet here, at least, we had good news... James was insistent that Heidi needs to lead a normal a life as possible... for both of our sakes. These illnesses will always carry risks for her, but it is more important that she grow up to be a happy, well-rounded little girl. If these illnesses come our way, they will give us all the support we need to ensure that Heidi survives them safely.

So it seems that while today was not the news we had hoped for, prayed for, longed for, it is the freedom pass back to some semblance of normality. We will no longer be living on the run from these illnesses, in fear of every little virus. That is mercy in itself.

Tonight, David and I have sat, and talked, and absorbed, and prayed. And yes, I have cried. Disappointment. Shock. Thankfulness. All rolled into one big ball of emotion.

Our little girl is beautiful... externally healthy, oblivious to all that is going on around her. She sang all the way home. For her, today was an adventure. Special time with Mama and Papa. And she has gone to bed, on her meds, healthy and happy.

What more can a Mama really ask for?

I can't thank you all enough for your prayers today. We are utterly convinced that the Lord has heard every one of them. For reasons only he knows, He has willed this road to go on a little longer for us. We trust Him. Even in the uncertainties. I know He has a plan and a purpose in all of this and I trust that. It's a broken, trusting heart. But trusting all the same.

Why? Why when it seems he has utterly ignored our cries today?

Because sometimes the road of growing closer to Him is costly and rocky and hard. That's where we are. If this road means our girls see our faith more raw and real, and consequently place their own faith in him? Then every rut and bump and rock in the way is worth it.

Hearts that love Jesus matter more than hearts with perfect arteries.




Ava's Prayer

Dear God,

Thank you for Heidi. Thank you for her heart. Thank you that you are making her heart better.

Thank you that you always look after her.

Please look after Heidi.

In Jesus name,

Amen


                     

Monday, 27 October 2014

Praying for Heidi...


I have been overwhelmed this weekend. Overwhelmed by people's words, text messages, hugs, promises of prayers and remembrance. It is such a comfort to know we have such an army of supporters behind us. God has used you all to minister to us throughout this journey with our little Heidi. From the very onset of her illness 17 months ago, we have felt your prayers, your words, your well-wishes upholding us. And I am so very, very grateful.

Our little girl has no idea how prayed for she is.

If I'm honest, I'm swinging between totally blanking out the fact that we're going, and being overwhelmed by that same sense of foreboding that seems to follow us to the Brompton every time, and then feeling that bizarre peace that cannot be explained... I'm trying to get my head, my heart, my soul prepared...

So many people have asked us what to pray for... so here you are. 

Pray for Heidi's arteries
There are three pieces of news we could get...
1) Bad News - Heidi's aneurysms have not come down at all... this basically means she will be on the medication for life, and we will have to learn to live with the fear that every temperature strikes through us, as well as frequent monitoring.
2) Frustrating/Goodish News - Heidi's aneurysms have come down further but not completely. This is better than bad news, but leaves us with another winter of uncertainty. If we get this news, we have no idea whether the aneurysms are continuing to come down, or whether they came down a little bit initially, and have since stopped.
3) Incredible, unbelievable news - That her aneusrysms have come down and healed. This would mean she could come off the medication, which removes all danger of chicken pox, flu and any temperature threat. I cannot say how wonderful this news would be...

Pray for Practicalities
Heidi will be prodded and poked a fair bit tomorrow. Nothing will be painful, but the scan itself requires her to lie still for 15-20 minutes while they scan her heart (a bit like an ultrasound scan). This, as I'm sure you can imagine, is no easy feat for a 19 month old. Please pray she will lay still, and not find the ultrasound too distressing.

Pray for Us
Pray for our hearts; that we will trust whatever the outcome. That we will be convinced that God holds our baby girl in his hands. That we will not fear. That we will know that God is good, and that he is the safest place to be when we are afraid.


Thank you. Thank you from the bottom of our hearts. We are so grateful to God for the way he has continued to uphold us throughout this, and for the way he has used you - our friends - to be such an unbelievable support and encouragement to us.

Please pray for our baby girl.
 

Thursday, 23 October 2014

Wet and Windy Day Activities: Savouring the Season

Wet and windy weeks are part and parcel of autumn, and so, I suppose, in many ways, this week's been no surprise!

Here's some of the things we like to get up to when the weather's a little... well... under the weather?! All of these have been done in our home in these last ten days Why not give them a go, if you feel like the little ones are crawling the walls?!

* Welly Walks (complete with umbrellas of course!)
* Windy park visits
* Playdough - cutters, plastic knives and mini rolling pins = hours of fun!
* Painting - nothing fancy!
* Reading
* Learning Fun Books - Ava is loving letter and number activity books at the mo
* Illuminous baths - illuminous glow sticks in the bath with lights out = ecstatic children!
* Hot Chocolate
* Movie afternoons - with homemade popcorn of course!
* Blanket tents
* Puzzles Galore
* Board games - and Snap! (The current fave!)
* Apple Printing
* Leaf collages
* Nature walks
* Surprise Trips out (more on this tomorrow!)
* Movie-making (always hilarious!)
* Dressing up (On Tuesday, I had Snow White, Tinkerbell, Ariel and Pocahontas all at once!)
* Baking
* Cleaning (with their own cloths and dusters)
* Sing- song time!

I thought I'd include a little video for your enjoyment of that last one!

video



Sometimes I despair in this wet and windy weather and wonder how I'm going to keep the children amused when we're housebound...

...and then I have a week like this and realise you can actually have a lot of fun when its tipping outside. We've had a whale of a week anyway! What do you do on wet and windy days?!

***

Savouring the Season is all about celebrating the season we find ourselves in...whether it be recipes, crafts, outdoor adventures or reflections on life, link up and share some comment love! And don't forget to grab a badge!

Anything autumnal goes!

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Tuesday, 21 October 2014

The Countdown...

Tonight I'm sitting in bed, iPad in hand, mulling over the knowledge that in one week we will have an answer. After nine months of waiting, I can't quite fathom the concept that once again we will be able to answer the question, "So how is Heidi's heart?"

My own heart speeds up at the prospect... I know I will leave crying - tears of joy, of relief of wonder... Or tears of heartache, of a mother who in all honesty is tired and worn out of worrying.

I try not to. I try to live by faith that The Lord has this. Some days I manage it. Somedays the gut-wrenching disbelief tries to take hold and I battle to give it back to the Saviour.

Somehow, for some reason, I think I'm entitled to a pain-free easy life... I'm realising that's westernised thinking. In Syria, right now, Mother's are fearful for their children every second of every day. Millions of them.

This world is a broken place. And even if (please!) we get the news we are longing for next Tuesday, I know I will now always view the world through slightly different eyes. Our Heidi has changed me in a wonderful and broken way and right now, I'm praying, that if Lord-willing we get good news, I won't forget the lessons this journey has taught me.

And if we don't get that news? I can trust I still have some beautiful and broken lessons to learn...