Back to the Brompton we go...

Joy and pain are two arteries of the one heart

That pumps through all those who don't numb themselves to real living

Ann Voskamp

1000 Gifts notes

Kawasaki Disease has been in the news this week... it still seems surreal to me that in this day and age there is a disease that has the experts so baffled. At last, they suspect they may have found a cause. It gives us some possible answers...

... but it doesn't help us with the daily reality of living with the consequences of it.

For the most part, Kawasaki Disease is an almost invisible part of our lives now. There is daily medication for Heidi, and there is the white noise of anxiety of illness that always looms in the background, but in the day to day, I barely think about it. We have come such a long way since those early days, when I couldn't see how life could ever be "normal" again.

However, when appointments loom, I guess its only natural that your anxiety peaks.

Tomorrow, we head back to the Brompton with our little girl for another Echo and update, Ironically, I feel the most calm I have ever felt before one of these appointments... ironic given that for the first time, I am going without hope. In all our previous appointments, I went with the hope of the news that her arteries had healed. But with that hope came the constant fear that they would tell us they had stopped healing.

At our last appointment in October, that fear became a reality.

And so we go tomorrow, the hope being simply that things have not got worse, that she is coping fine on her medication, that we are just to continue on as we are. That was my worst nightmare a few months ago...

And yet somehow, there is relief in knowing the truth... there is relief in knowing what you are dealing with. Sometimes uncertainty is actually harder to cope with than the truth, however awful it may be.

And in the context of Heidi's heart, and little arteries that are still ballooned, the quote above grounds me as we prepare for tomorrow... without the pain, we wouldn't feel the same depth of joy. The joy of life... thankfulness for a beautiful little girl who is loving life and growing and thriving... God has allowed this heartache in our lives to help us to know the joy of real living. How much deeper our appreciation of life, how much more wonder at the developments of modern medicine... how much greater our thankfulness to our Heavenly Father who has had us so firmly in his grip throughout this storm.

I may feel a bit more battered and weathered, I may wish our life was simpler, I may long for a day where the slightest temperature in our little girl won't send my mind reeling with fear.

But I am thankful that the war wounds, the scars, the fears and failings have helped us know the Saviour better.

He is good. And as we walk through those hospital doors tomorrow, he'll be right there with us...

Please pray...

* That Heidi won't be afraid, and that she will cooperate with the Doctors, particularly during the ECG and Echo which require her to lie still for around 20 minutes.

* For stability in her case... that things won't have gotten worse...

* For emotional strength for us

* For practicalities like Jonas' feeds - that everything will work out in terms of timings

* For Heidi as she begins to grasp that there is something different about her heart, and for wisdom for us as we seek to explain that in a sensitive and age-appropriate way

* For a miracle? That perhaps, just perhaps, God may have healed her...

Thank you to all of you for your continued love, support, well-wishes and prayers. We are hugely grateful to God for the provision of each one of you. He has used to to encourage us in ways you will probably never know.

We are blessed beyond belief.

This Day...

This day, two years ago, was the day after. The morning after the nightmare. The morning after I wrote this...

Shock. I feel like everything is spinning. I cling to the side of her cot and sob, and the next minute I am overcome by a wave of peace. Then the rollercoaster continues. Feeling physically sick, thinking I'm going to collapse. I KNOW God is here with us. He holds us tight. He will not let us go. We sit in tears and cry for our baby girl. It just hurts so much.

When I read these words, the memories come flooding back... The recollection that as the Doctor gave us the prognosis, my legs buckled beneath me and I crashed to the floor, clinging for dear life to her cot bars as nurses flooded round to curtain us off from the sympathetic eyes of the rest of the ward. In my almost thirty years, that is the only time I have ever truly lost control. The panic, the horror, the shock... Our baby girl... We had spent three weeks in and out of hospital, we had finally got a diagnosis, and here, in the Brompton, we were seeing the damage that had been done.

         

Our baby girl's heart, perfect on her arrival in the world, had been attacked, and her coronary arteries were now distorted, ballooned and her little life... Her precious twelve week old, chubby cheeks and first giggles life, was on the line.

And worse, we realised, this was not curable... It was quite possibly something she would have to live with for the rest of her life. There was nothing the Doctors could do except watch and wait.

How do you cope when your care-free, picture-perfect life comes crashing down around you? When the future, instead of looking full of little girl antics, tree climbing and storybook reading, suddenly fills with hospital visits, daily medication, and a question over life expectancy?

You don't. Not on your own. You crash. You burn. You sob. You rage. You question. You die a little inside.

Except that we weren't on our own. We knew that. Through the whole gut-wrenching, heart-breaking experience, never once were we ever alone. We were held, we were carried, we were given all that we needed to survive. When we felt we couldn't go any lower, the Saviour was beneath us, when we needed someone to lean on, he was beside us, and when we needed hope to look to, he went before us.

And now, two years on, I look back on this hideous day with thankfulness and with peace. Our little girl is not better. She is still on daily medication, she still has twice-yearly check-ups and any illness throws me into overdrive as we seek to protect her from the side-effects of her meds. But she is here. She is thriving. She is living in a world of little girl antics and tree-climbing and storybook reading... Just what I'd always hoped for...

       

   
All thanks to the one who went below, walked beside and led us forward.

Thank you Jesus for our Heidi. We are eternally grateful... For this day two years ago when the consequences of that awful Kawasaki Disease began to be treated... And for every day since.

And thank you that her heart; physical, and spiritual, is totally in your hands...

Amen.

May...

May.

Spring sunshine.

Blossoming trees.

Little girl laughter.

Yet those memories.

They get easier with time... This May has not filled me with the same sense of foreboding that those golden days of last spring did. This May has not hit me with the agony of two years ago.

Time is, as they say, a great healer.

Our little girl is oblivious to all she went through two years ago. Her big sister has long forgotten the separation. We? We will not forget... I don't think we ever could.

But we will hold on for hope.

Because although time has not healed our little girl's arteries, it has allowed us to learn to live with the consequences of those fateful May-days, and instead of getting sucked into the "what-ifs" and "if-onlys", to be eternally grateful to have our Heidi-girl with us now. Living her little life to the full, a bundle of energy, a ball of giggles. Our little comedian.

She could not be more effervescent if she tried to be.

And so hope becomes our friend. Our anchor. We learnt some big life-lessons two years ago. About how precious life is, about what a gift every day is, about how faithful our God is, even in the pit. 

And we're still learning. Every day. To trust. To hope. To hand it all over to Him.

So I'm going to be thankful for these May days this year. And instead of dwelling on all we nearly lost, the anxiety which still lingers, I will thank God for his care for us, his provision, his mercy in sparing our baby girl. And I will take joy in watching these little ladies loving life and seizing each moment with all their energy.

Two years ago, I wondered if I would ever see that day.

I'm so grateful that I'm witnessing it now.

KDAD... a day to remember...

Today is a day that in many ways I wish I didn't know about... I only know about it because we have, in the past two years, come face to face with it in a most life-changing, unexpected way...

In other ways, I wish I had known about it just a little earlier... I don't think the "what-ifs" will ever quite go away. Perhaps if I had known about this day, the events of the past two years might have transpired somewhat differently.

Today is Kawasaki Awareness Day.

Kawasaki Disease is a rare condition about which relatively little is known. It cannot be prevented and is difficult to diagnose. It is therefore one of the most dangerous childhood illnesses... particularly as it heads straight for the heart. There are many theories about what causes this disease: but two things are certain... it is not hereditary, and it is not contagious. You cannot possibly see it coming...

It is therefore absolutely vital that people know what to look for.

 

Medical experts suggest that if two of the above symptoms are present, alongside the fever, then the alarm bells should be raised. There is no test for KD, so diagnosis is possible only as a result of affective treatment.

When Heidi was diagnosed at 11 weeks old, she was 15 days into the illness, and consequently the diagnosis came too late for her little heart. Ideally, diagnosis should take place between days 5 and 10, and if this is achieved, there is a good chance that no permanent damage will have been done to the blood vessels surrounding the heart.

KD usually affects children between 18 months and five years, normally boys and often of Asian descent.

Our Heidi was a nine-week old baby girl of European descent who presented with only a rash and fever. She did not tick the boxes above, and therefore took a lot longer to diagnose. She had cracked, bleeding lips for the first day of the illness... I'm not sure I even told the Doctors that. Had I been informed, and known the symptoms, perhaps I could have raised the alarm.

Of course, in all this, we have learned to throw ourselves fully on the sovereignty of God. I do not think I could bear the "what-ifs" and "if-onlys" otherwise. In time, our little girl will have to learn to do likewise as she lives with the long-term consequences of this disease.

Please be informed. Please read up the information. Please spread the word. I don't want to scare-monger or worry... it is so very rare (8 in 100,000 cases in the UK per year, only 5% of which have long term consequences), but when your daughter is one of the 5% of the 100,000... you want to make sure no-one else ever has to go through that. If more people are informed, perhaps we could do this disease some damage and stop it attacking little hearts across the world.

...Please join me in raising awareness today and share this post across your social networks...

You can read our Heidi's Story here

Yesterday...

Yesterday I had a quiet day. Thursdays for me mean Ava at Nursery, and Heidi out with my Mum. They are my "space" day, my "catch up" day, my "odd jobs" day. But yesterday I had a change of plans at the last minute and found myself at a loose end.

That doesn't happen very often.

And so I pulled out my scrapbooks, set up my laptop, grabbed myself a cup of tea and began sorting.

I made a scrapbook for Ava after she was born. It holds all the mementoes of the first year of her life. Little treasures I have stored up - from scan pictures to baby bands, from hospital feeding charts, to her first plane ticket. Mixed in with all the photographs (and you know how many I take) of her first precious year of life.

Our Ava - aged 7 months

And Heidi's scrapbook has been on my to-do list for 18 months now. And its no nearer done than it was the day she was born. Or at least it wasn't. Until yesterday.
 
And then I sat down and waded through this little life. 22 months. 22 months that have packed more life experience into them than probably my 27 years that preceded them. I sorted through photos of our girls sharing their first moments together, I smiled over photos of those blissful early days of Heidi's life where she really was the dream baby, I cried over photos and memories of the uncertainty of those dark days of her illness, and my heart ached to relive it all. I rejoiced at the joy of that summer. That summer when we were slowly restored by our gracious Heavenly Father as we swam fjords and gazed over Norway's beauty.

Little Heidi - aged 4 months

Then last night, we were out with friends, and I heard a tragic story.

And I realised again how very much I have to be grateful for.

I will spend these next few weeks carefully putting together Heidi's scrapbook. One day, it will help her understand that first year of her life, I hope, and all the consequences of it. And I hope, though there will be some hard things for her to come to terms with, she will see the beauty of that year too. And see how much we, as a family, have to be thankful for.

Our little family at Heidi's dedication, we had just been discharged from hospital for the final time.

So I await the arrival of my photographs now... and I'm looking forward to finally recording that year, hard as some parts of it will be, because it has sharpened us, changed us, taught us more about the Saviour, brought us closer together as a little family.

And let's be honest. My little lady needs her scrapbook... and her Mama needs to get on with it; there'll be another one to make all too soon!

The year that was 2014...

2014... I think it will always be a year I hold dear to my heart. The calm after the storm... the beauty after the brokeness... the year I began to learn how to live our new normal.

A year of healing.

Perhaps not a year of healing in the sense I would have planned it. In my head, 2014 was the year that Heidi would be healed. In the Doctor's heads, 2014 was the year we would see that happen too.

We were all wrong.

She is not healed. Her arteries are so much better than they were, but they are still a long way from being right. And the signs seem to say that they have given up fixing themselves.



Yet we have been healing as a family. In so many little ways. Learning to rest in the truths of God's character that we saw so powerfully at work in the midst of the trauma. Learning how to cope with the fear that strikes every time illness hits.

My heart has been healing... even though Heidi's has not.

In a sense both our hearts will never be the same again... hers physically, mine emotionally. They are scarred and changed. They will never quite be the same again.

But this year we have been learning that that is OK. That it doesn't mean we have waved goodbye to joy, or hope... in some ways, it has heightened them. There are so many things that I will never again take for granted. So many ways that the Lord has shown me his unending love and care for us... and the reaches to which he will go, that I would never have seen were it not for these past 18 months.

We have been learning, as a couple, to trust our little girl into the Lord's hands... not an easy task, but I'm learning, slowly but surely, that he has our little girl totally in his care, and there is nothing and no-one who can change that. What relief there is in that.


Ava, meanwhile, has been learning to forget. For months after Heidi's illness, and into the beginning of this year, I saw the scars on our big girl too. Things that would jerk her memory. Worry lines etched across her face when she asked about Heidi's heart. Recollections of hospital, and her time away from her Mama and her baby sister. Over this year, I have watched with relief those worry lines fade. The reality of a vibrant, fun-loving, cheeky little sister overcoming her memories of that little chubby body covered in wires and tubes. We still talk about it, we pray together for Heidi every night. But that anxiety that I used to see in her has been replaced by the reality of the everyday. Just like it should be for a three-year-old.

And Heidi? Well, Heidi has been learning this year how to do everything an almost two-year-old should. She is learning to say "No!", she is reciting the entire script and soundtrack of Frozen, and she's generally creating havoc wherever she goes... in a darling, cheeky, loveable kind of way. And I look at her and just think how blessed we are. How could we not heal when we have been so blessed with the gift of these little girls?

I am thankful for so much this year... thankful for respite, thankful that I have remembered how to get stressed about stupid little things like busyness, and where my car keys are and another broken toy. I never thought I would care about any of those kind of things again. There is a perspective in trauma and hurting and pain which is such a gift, but sometimes its nice just to remember how to freak out over something silly and small. And it shows me how far we've come.

Again this year, I have learnt that our God is faithful. That he cares about the smallest details of our lives. That he promises ALWAYS that he will bring "all things together for the good of those who love Him". We're still not through the woods, I still have days where Heidi's condition feels overwhelming, I have the occasional nightmare about the reality of how things could still go wrong, but all in all, we are so very grateful for all the love, care and prayers of our friends and family around us.

Most of all, we are thankful to the Saviour... who has blessed us with a year to recover. "We do not know what tomorrow holds. But we know who holds tomorrow..."

"But I trust in you, Lord;

I say, "You are my God."

My times are in Your hands..."

Psalm 31:14-15

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 

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

                     

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.
 

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...

                        

  

In Two Weeks, We'll Know...

In two weeks, it will be the morning after the biggest hospital appointment of our year. In two weeks, we will know, a little bit more, the long term consequences of Heidi's Kawasaki Disease.

As the two weeks draw near, I find myself flitting between a determined denial; an understanding that I can do nothing to change the outcome and therefore there's no point in even thinking about it, and a deepset fear. I know the Lord holds our Heidi utterly in his hands, but sometimes the unknown is easier to swallow than the truth...

In two weeks, we will return to the Royal Brompton for another Consultant appointment: vitals, followed by an ECG, followed by an Echo (heart scan) followed by the all important Consultant meeting, where we will once again find out what is going on in our littlest girl's body.

If you have no idea what I'm talking about, you can read Heidi's story here. The initial trauma is over, but the long term consequences, and the day-to-day background anxiety of a child with a serious heart condition, continue.

And so, in two weeks, we will know.

In two weeks, we'll know whether Heidi's last affected coronary artery has healed itself like the others
In two weeks we'll know whether the aneursysms that literally covered our baby girl's arteries have gone forever.
In two weeks, we'll know whether Chicken Pox will continue to be our worst enemy, or simply a childhood illness to be endured.
In two weeks, I'll know whether any mention of Chicken Pox turns our daughter into a recluse, or whether she will have the freedom to mix and play with children who "may" be carrying it.
In two weeks, we will know whether her daily medication can be stopped, or whether it will need to continue.
In two weeks, we'll know whether this has been a short, painful chapter in our lives, or whether it will be a lifelong book with chapters yet to come.

In two weeks, we'll know whether we will ever be able to look back on this difficult, lifechanging period of our lives as history, or whether it will may well always be a reality we live with.

Two weeks.

How do you begin to get your head around that knowledge, when Kawasaki Disease and its devastating consequences have lived for the past 18 months like the silent, unwelcome fifth member of your household? When EVERY gathering with other children strikes that slight fear that perhaps will bring our Heidi into contact with something that could be life-shattering for her? When every dinner time is followed by a dose of medication that never lets you forget? When your daughter is removed from the public for nearly six months because she can't afford to risk catching certain illnesses?

The prospect of healing is unfathomable... and yet the Doctor's told us they were hopeful.

So I begin to prepare my mind for this appointment. Two weeks, and things will be much clearer.

One way or the other...

Do I hope? Or do I put up my self-protective wall that won't let me hope, because the fall down will be too hard?

Or do I do that other thing? That thing I've been learning in a more real, painful, world-shattering, broken-but-beautiful way...

Do I trust that the Saviour holds our girly in his hands? That his will WILL be done? And that it will be for his glory, and Heidi's good? That I can know, without shadow of a doubt, that whatever happens in two weeks is absolutely right?

Do I trust Him?

The answer - through the trips and turns, the tunnels, the valleys, the bottom of the pit and lower - has proved this past 18 months to be "yes"...

I can trust Him. He has proved so very, very, faithful.

And so, Lord, I do.

Help me when I doubt...

The Day of Horrors: One Year On...

I'm taking a break from Savouring the Season this week... I'm so sorry to all who have stopped by for it, but today is a very important day for us and I want to pause and remember in thankfulness all that The Lord has done for us this past year.

It is no over-exaggeration to say that this day last year was without doubt the darkest, most awful day I could ever have imagined, never mind experienced. In one fell swoop we had the breath knocked out of us. We had gone to hospital hoping for good news for our darling baby girl after a hideous, out-of-nowhere attack of a very rare disease called Kawasakis and were given the news no parent ever wants to hear.

"Your baby could have a heart attack at any moment. You are not going anywhere. The disease has attacked her arteries and they are in a mess"

On this day last year, I sobbed like I didn't know it was possible to sob. I remember clinging to her cot bars in floods and collapsing to the floor while nurses tried to swiftly draw curtains around us so we didn't have an audience. I remember the numb shock. The inability to breath. The utter inability to believe. It feels so real, so recent... And yet a lifetime ago.

One year since I wrote this...

Wednesday 3.30pm
Shock. I feel like everything is spinning. I cling to the side of her cot and sob, and the next minute I am overcome by a wave of peace. Then the rollercoaster continues. Feeling physically sick, thinking I'm going to collapse. I KNOW God is here with us. He holds us tight. He will not let us go. We sit in tears and cry for our baby girl. It just hurts so much.

Wednesday 7.20pm
Our little Heidi is very sick. Please pray for her healing. We know that God is good and has his purposes, but we are hurting and would cherish your prayers. Please pray for little Heidi's heart and pray for wisdom for the Doctors. Please pray for little Ava too, as it could be a long time with an absent Mama.

Wednesday 9.30PM
We are at the Brompton. The Echo revealed that the coronary arteries are inflamed in some places to 3-4 times the size they should be. The danger is obviously clotting and heart attacks. We are in total shock, but thankful to be in the best place... I have cried more tears than I knew I had in me...

Reading back through this stuff is hard. But it also leaves me grateful. One year on, and two of our baby girl's arteries have healed themselves. Incredibly. At the time, we were told there was nothing the doctors could do... Only time would tell if Heidi would ever be able to live a life free from medication, free from the limitations of blood thinning treatment. Only time would tell if she would survive.

One year on and she has survived. She still has one artery which is not as it should be... And we live in hope, and pray, that it too will heal. Life in the shadow of Kawasaki's is not easy. We live every day on the run from illnesses that could lead to even worse consequences than what our Heidi has already coped with in her little life. Flu and chicken pox could be life-threatening.

And yet, in many ways, life continues as normal. We live on, so thankful that aside from a nightly dose of medication, Heidi's life resembles that of any 15 month old. She is a beautiful, sweet little fighter and we love her so very much. All that we have been through together only winds those little knots of love tighter round your heart and I can honestly say I am so proud of both my girls, and how they have coped with huge burdens this past year. Burdens I have coped with at 28, they have dealt with in their first two years of life.

And yet, through it all, I see that God is in control, is good, and faithful.

Why did he allow this to happen to us? Why did he allow our baby girl, perfect at birth, to be attacked by such an awful and heart-wrecking disease? Why?

These are questions I battle on a regular basis... But they are questions which I can honestly, in peace, lay at the Saviour's feet...

Because all things happen for the good of those who love him.

Somehow, this is for our good. Our good. Heidi's good. Somehow. And I cling to that, sometimes through tears, and thank him for his faithfulness. He held us so completely through those dark hospital days, and holds me even now as we seek to provide normality for our girls in the aftermath. 

After the storm comes the rainbow... In the darkness come the stars... There is beauty in the brokenness, there is hope in the dark. I know that. I've learnt that. I'm learning that still.

Every day.

One year on.

Ava and Heidi - one year ago in the Royal Brompton Hospital

 

Ava and Heidi... one year later playing in the garden

One year...

Today marks the one year anniversary of the start of Heidi's illness. This time last year, I sat in church feeding my baby and realised that something was wrong. I´ve been dreading this day. But now that its here, it doesn't feel so big. We're having a lovely time in Austria: away from the memories, and away from too much space to think.

Somehow that feels right. Its helpful just to get through these days and I´ll have time to process it all when it doesn´t feel so raw anymore. I'll do that. I'll make the time. But right now, we are just having girly days, catching up with friends, visiting the animals and breathing in this beautiful country.

And I`m not letting my mind go back to this time last year.

So here's a little insight into our wonderful weekend in the Austrian mountains.

Golden Days...

I keep doing it, and I can't seem to help it.

In the golden sunshine there's a deep sense of foreboding. These golden days. They take me back to the golden days of last spring. With two healthy, happy little girls... a life that was overflowing... a life that was blissfully happy... and hurtling headlong into a nightmare.

I lay in bed with Ava yesterday. Stroking that golden hair while she fell off to sleep and feeling sick in the pit of my stomach at the memories.

We had no idea.

And I begin to wonder how I can ever be blissfully happy again when there is always that nagging doubt, that underlying fear that perhaps there is a dark cloud heading for us again. And we don't even know.

Just like we didn't know. This time last year.

And I realise then, that I could be eaten up by this. Destroyed. From the inside out. Eaten up by the memories of the anguish and heartache. The shock. The unbelievable shock. And the uncertainty and doubt... and the questions that still hang over our Heidi... it could devour me.

But it won't.

Not because I have this amazing super-strength. Not because I'm a "inspiring person" and somehow won't ask the questions that everyone asks when their child has a life-threatening illness. Not because my faith is water-tight and unquestioning.

But because the Saviour was underneath us in the pit. He went lower. He held us there. And I know now, if he can hold me there? He can hold me anywhere.

And that's why, when the memories flood back, when the foreboding sets in... I can chase it away. I can defeat it. Because I don't know what tomorrow holds...

But I do know who holds tomorrow.

These golden days. I'm going to cherish them.

Because they are beautiful... and what is a life, if always lived in fear?

²⁵ “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? ²⁶ Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?

- Matthew 6:25-26 -

Dear Heidi... You are One!

My baby girl...

You are one!

One!

How quickly this year has gone by... how high we have flown on joy, and how low we have delved into the pit, scrabbling for any scrap of hope. Your little one year journey through life has taught me more about the Saviour, about myself, about your amazing Papa, about your strong big sister, about our wonderful family and friends than anything I have ever experienced before.

And this year I have loved getting to know you, little Heidi. So contented. So strong. So happy and cheery. You have wooed every Doctor, Nurse, Play Specialist, Cardiologist and Sonographer. Sometimes I wonder if you are so relaxed because of everything you've had to go through, or if everything you have gone through has made you this way.

Either way. You are precious, beautiful, sweet-natured, determined and our little comedian. Already you put us all in stitches with your funny faces and your choice of first words.

I mean, what child has the word "Rottenmeier"** as one of their first words?? (Pronounced by Heidi "Rottenmah!")

(Too much of your Heidi - book!)

You are saying a  few words now -  Mama, Papa, Ava, Wow, Hase (Bunny) and your continued favourite - "Aaaa-men!". I love coming into your room when you wake up - bleary eyed and rosie-cheeked. You look at me and point forlornly at your bunny (who you have always thrown out of your cot) and say "Hase!" You will not be distracted until I have placed your beloved bunny back in your hands!

One of my favourite things to watch this past year, has been the development of your relationship with your big sister. She adores you, and you her. It warms my heart so much to see you playing together, or chuckling over something "funny"... yes, at times she is a little heavy-handed, but you are so patient and relaxed and just take it all in your stride.

I have loved becoming a Mama to two. This time last year, you were preparing to make your way into the world (you were born in the evening)... and I wondered, if I'm honest, how I could ever love anyone as much as I did your big sister... but do you know what? The moment I saw those chubby little cheeks (yes, you were a full 8lbs 8ozs) and that black tufty hair, my heart was totally yours. Somehow I love you as intensely as your sister without taking any love away from her... a mystery... but a wonderful one.

I am thankful to God every day for the precious gift that you are to us... I am thankful for all that you have taught me, I am thankful you are still here - so full of life, so effervescent, so sparky and funny. And I shudder at what we could have lost, and remember again that life is fragile, and that each day for any of us is a gift.

And so the Lord has been teaching me a life lesson through you, little Heidi. To treasure the little, the everyday, the ordinary. Because those things are the building blocks of a life... they are the little things that make up the daily, the little things we will look back and treasure. The "nothing" moments that together make up the "everything"

The everything. That's what I want you to know.

Because really the "everything" is not a thing; its a person. He's a person. A person who, though I cannot get my head around it, loves you more intensely, more deeply, more perfectly than I do, or ever could. He gave everything up to give you a new heart... a not broken, damaged, inflamed-arteried heart, but a perfect heart that is soft to him, and is full of Jesus. I so long for you to know that, have that.

So as we mark your first birthday, little H, we thank the Father for every day with you, our beautiful baby girl, and thank him for his everylasting faithfulness.

Wir haben dich so lieb, unser Schnucks!

Mama und Papa xxx

** Fraulein Rottenmeier is the horrible Housekeeper in Johanna Spyri's "Heidi"... yesterday I was asking the girls which episode of Heidi they would like to watch... Ava answered the one with Fraulein Rottenmeier, at which point Heidi proceeded, like a parrot, to say "Rottenmah" on repeat about 8 times!)

If you enjoy the blog, we'd love you to support us and cast your nominations for the "MAD (Mum and Dad) Blog Awards our way!

We're currently up for "Best Baby Blog" and "Best Family Fun" but you can nominate for any category you feel we fit into... Thanks to all of you who have already nominated! :D
Nominations close March 14th.

Party time! Heidi's Rainbow Party...

In exactly one week, our little Heidi turns one! I can hardly believe it! That tiny little bundle that was placed in my arms in that operating theatre has become a cheeky little lady with chubby cheeks and an infectious giggle. She has been through an awful lot in her little life, and in many ways, this time now feels like the calm after the storm... the beauty of hope after dark days. And so it only seemed right to throw her a "Rainbow Party"...

The promise of hope and a future.
The symbol of God's faithfulness.
Beauty after the storm.

And so this Saturday, we will gather with Heidi's little friends and their families and celebrate the birthday of a special little lady. One who has survived a storm, and who has taught us how deep God's faithfulness really runs.

The party will be a multicoloured affair - red, orange, yellow, green, blue, indigo and violet. Pretty colours for my gorgeous, growing-too-quickly baby girl!


I've been "pinning" away to my hearts content, and am all inspired to rustle up this Rainbow Party!

Eeek! 

If you enjoy the blog, we'd love you to support us and cast your nominations for the "MAD (Mum and Dad) Blog Awards our way!

We're currently up for "Best Baby Blog" and "Best Family Fun" but you can nominate for any category you feel we fit into... Thanks to all of you who have already nominated! :D
Nominations close March 14th.