Monday, 10 June 2013

Being grateful...

This weekend has been wonderful. Wonderful to be home. Wonderful to feel the sun on my skin. Wonderful to plant my pots in the garden while our little girls napped. Wonderful to spend time with my husband that didn't involve us worrying over a hospital cot. Wonderful to do "boring" things like shopping for bunkbeds.  Wonderful to have family and good friends around us. Wonderful to laugh at my big girl as she plods around the garden on her Uncle Agga's mobile, and then loses it, only to be discovered later hidden under a grate!


Of course, the "wonderful" is tinged; tinged by that voice that hits me every morning when I wake up and gaze at our sleeping baby girl in her Moses basket beside us. That voice that just whispers "heart, heart, heart" every time I look at that gorgeous chubby face. It aches. I'm lying if I pretend it doesn't. But somehow, we are beginning to come to terms with this "new kind of normal". I have to. Its not fair on any of us if I allow fear to grip me... and its certainly not fair on Heidi.


So I have soaked up the good things this weekend. Appreciated the things that only a month ago, I took so much for granted; being woken by my little girl's singing and cries of "Mama? Papa?", cooking, cleaning, hanging out a load of washing, being able to carry my baby girl around without being attached to an IV line, privacy, being outdoors. All of these things I have become so much more thankful for, and as I was dwelling on this, I was reminded of a line from my friend Ruth's blog. Ruth has known suffering as she battles daily with CF... she said...

When life is good it's easy to be grateful for the lovely things you have. Of course it is.
But it's when something hard comes that your grateful muscles really have to be used. At first, because you haven't used them much before, it hurts. It hurts like crazy. How can you truly be grateful for something so hard? But the more you use them, the stronger they get. It doesn't make things hurt any less. It doesn't mean that hard things are suddenly a breeze. But your grateful muscles become a powerful part of your weaponry. And the grateful prayers that seemed so hard at the beginning come more naturally now.


She is so right.

I can't pretend I am grateful that this has happened to us... I would, of course, do anything in my power to make my baby girl's heart healthy. Anything. And yet I am grateful for what I can see it is doing to us... to our faith... to our bond as a little family... to the adoration Ava has for her baby sister... to our marriage. There is something about hard things that forces you to appreciate what is good so much more. Of course, I wish we could have learned these lessons another way, but that's when we have to trust. Trust that there is purpose in this, and that God will give our little girl the strength to cope with the frustrations and limitations that come as a result of this.


And so, I ask you again to pray for us. Tomorrow we head back to the Brompton. Please pray we will see some improvement. Pray that Heidi will be able to move onto low dose aspirin. But pray, most of all, that whatever happens, we will be able to be grateful.

Saturday, 8 June 2013

12tel Blick: May

I'm a bit late with 12tel Blick this month... we spent 3 weeks of May in hospital, so the garden sadly wasn't the view I enjoyed. But I did manage to get this picture on the 4th June... I'm hoping I can still count it as my May picture!!!


Friday, 7 June 2013

Always better when we're together...

I have been soaking up just having my little family together again this week. We have been having lots of cuddles, lots of walks, lots of playtimes and just being. Just us. Perfect.

Just my favourite toddler in the entire world...

Chilling in their tent!

Heidi and my Mum, who, as always, has been an incredible support

Showing Heidi our scarecrow...
Sneeze-face!
Snuggles with Papa

Practicing sitting...

Bedtime smiles. I love this Bubba so much.

All the girlies together!
Hoping you all have a wonderful weekend!

We are going to enjoy the sunshine.
Enjoy being at home.
Enjoy our family.
Enjoy being alive.

Thursday, 6 June 2013

One much-loved little girl...

This arrived in the post yesterday from a 7-year-old at church... nearly made me cry. A few hours later I got a text from her older sister, also primary school age, with a Bible verse telling me she had been thinking of us.

We feel so very loved and blessed. Thank you girls.


Wednesday, 5 June 2013

Goodbye Hospital...

Yesterday was an emotionally charged day. The morning passed by in the usual routined hospital manner. Up, feed, ECG, breakfast, obs, Heidi's nap, Doctor's round. A routine that has, over the past three weeks, become like clockwork. Second nature, almost. I can see how people so quickly get institutionalized. After being cooped up so long, the big wide world does feel a big and dangerous place.

And that's where we were heading. The big wide world. We hoped. We prayed. I had been "going home" too many times now, only to be disappointed. But this seemed different. We had had the go ahead from Dr Rigby himself...

The Doctor checked over Heidi, requested a final ECG and suggested some further medication. Then he smiled, said he'd make us an appointment for next week, and that was it. We were going home.

I was elated, and what followed was a mad dash of getting everything together, as we had 25 minutes before Dave's parking ticket ran out (never try and park at the Brompton!) and possibly the slowest, most laid back and dawdly nurse in the entire universe (she was lovely but had no concept of urgency... and that's putting it mildly!)

After tooing and froing between the hospital and the pharmacy (don't get me started on that fiasco) we were finally on our way home. Heidi slept in her little car seat beside me, as the sun beat down. After being "locked up" for 22 days, the fresh air and sunshine was exhilarating.

Dave and his Dad chatted in the front while I looked down at our baby girl and the heaviness set in again. As always, my emotions flitting from ecstacy one minute at how far we've come, how bad this could have been and how well Heidi seems, to that deep ache that things will never be the same again. My baby girl's heart is damaged and even the most expert Doctors in the country can do nothing but sit and wait and see what happens... that's hard. It's tough. Its raw.

But I'm also thankful for all that this journey has taught us so far. It has shaken our world to the core, but thats not always a bad thing. When life is easy, its all to easy for God to be a spectator with the occasional say; when life takes a tumble, you find you're clinging to him for dear life. And clinging to him is where the real heart stuff happens, where you meet him in a deeper, more real way. He's at the peaks and in the deepest, darkest valleys. I know that.

This road we're on has also been incredibly humbling. It has choked me up on many occasions to realise how loved our little family is. What an incredible support network we have. Every single text was like a drop of water on a barren heart. It soothed, it quenched, it restored life. Thank you. From the bottom of our hearts for every text, card, comment, meal, offer of help, hospital visit and gift for the girls. You do not know what a blessing it has been to us.

People keep asking what they can do for us. We honestly want only one thing. We would love people to commit to pray for our Heidi. Not just in the immediate future, not just while things are still fresh and raw, but into the aftermath. Into the years of hospital visits and medication that she will have. Into the childhood years, the tweens and the teens and beyond. If people would commit to pray for her, we would be so thankful.

For now, we sit in our home, with our little girls sleeping upstairs, somehow beginning to comprehend the past 3 weeks. The adrenalin rush has stopped and this is where reality hits. The next few weeks will be tough for all of us as we adjust, as Heidi's heart condition becomes normality, as stuffing your baby daughter with medication starts to become part of the daily routine. Please pray for us. The adjustment will not be easy.

Please pray for Ava too. One little girl who literally could not stop kissing her baby sister all afternoon, who, when Heidi was crying last night, called out from her bedroom "It's OK, Heidi... Ava is here", who has already thrown a couple of tantrums as she readjusts to normality. Pray for her little heart too. It is physically healthy, but she, just like us, needs Jesus.

So thank you, again, from the bottom of our hearts. We know we are truly blessed.


Tuesday, 4 June 2013

Reunited at last...



Your love, Lord, reaches to the heavens, your faithfulness to the skies.
- Psalm 36:5. The Bible -

Letters to my girls: Dear Heidi...

Dear Heidi,

My precious baby girl - a bundle of smiles and joy and utter cuteness. You are so special to us and we love you so very much. We are so sad that this has happened to you, but we are so very glad that you are safe and here with us. We thank God for keeping your little life every day.

As I look forward to the future, there are still lots of unknowns... but this has given me a much clearer picture of what I want for you, my darling girl. I want you to be able to be a little girl - to run and jump, to climb trees and have tea-parties with your dollys, to play make-believe with your big sister... I want so much for you not to be hindered by this and I will work hard not to be over-protective.

Forgive me for the times I will be. I am sure there will be times when my fierce, protective love for you will feel like I'm holding you back. Please talk to me about it... I want you to be able to be as independent and as much of a free-spirit as your big sister, but I will find that hard, at times. Hard because we so nearly lost you, hard because the fear of being "out of control" will make Mama panic, hard because we have had to take this road together and its not an easy one.

I am so glad you have Ava for your sister. She is strong and independent, and she will help Mama to be able to let go a bit, loosen up... she will fight your corner I'm sure!

You are so very strong - our little fighter, and I know, in that sense, you won't need anyone to fight your corner for you. You have already shown that it is possible to be incredibly strong, and yet sweet-natured at the same time. I am so proud of you, Heidi. Proud of you for remaining so cheerful and charming despite all that you have already had to go through in your little life.

I am so grateful to God that neither you, nor Ava, will remember this terrible few weeks. It has been so hard, but has just made Mama and Papa love you both all the more intensely.

We have learnt to rely on God in a deeper way, these past few weeks, and actually, our prayers have changed somewhat too. Your little heart needs so much prayer... but actually, yours and Ava's spiritual hearts are what we have been praying for too. We pray that your little hearts, whether healthy, healed or  not, will belong to Jesus. He is the best person to take care of them. We have found his love runs deeper than the deepest, darkest ocean, is wider that the most vast canyon, is water in the deserts of life. He has upheld us, sustained us, strengthened us, and soaked up our tears. We pray that both of you girls will also know the Saviour who loves you, oh so very much.

He is the rock upon which we build our little family - we pray you will build your little lives on him too.

Wir haben dich sooooooooooooooo lieb (als die Ava sagen wuerde!)

Mama und Papa
xxx

PS - happy 3 month birthday!