An email from Bernard

Bernard wrote this email the night that Maddy was born (ie, last night) and I thought it was so great that I got his permission to post it on my blog too. I want to set him up as a contributor on my blog but he said he wouldn't post - so I'll just have to post his emails myself ;) 

Dear family, relatives and friends,

I just wanted to let you all know that our little girl Madeline (or Madelyn - we're still deciding on spelling) arrived at 4:53pm today.  She is by-and-large quite healthy so we're all really grateful and thankful for that.

As some of you may know already, the doctors had suspected that Maddy might have a form of skeletal dysplasia called "diastrophic dysplasia" (also called "DD"). (I guess a number of you might have been following Nicole's blog (http://nicolejoy81.blogspot.com) about our journey through this situation but I thought I would send around an e-mail for the benefit of those who don't follow it.)  DD is s a genetic condition, and what this means is that there may be complications with the formation of her bones (which can affect her height and appearance).  We found out at 17 weeks that Maddy might have this condition - but we nonetheless decided to continue with the pregnancy.  It wasn't an easy decision, but we knew it was the right decision to make.  And it's certainly been a rough ride for us (and family also), and we're extremely grateful to everyone for their prayers and support.

Anyway, since DD affects the formation of the skeletal structure, one of our biggest concerns was that Maddy's chest wouldn't be large enough for her lungs.  Well, the doctors and the consultants have had a look at her and they think it sort of looks ok.  But having said that, Maddy's been moved to the NICU (Neonatal Intensive-Care Unit) for observation because she's having trouble with her breathing now - they've put her on CPAP (see http://en.wikipedia.org/wiki/Positive_airway_pressure) to try to help improve her breathing.  The doctors have said that we might need to be prepared for this (i.e. the issue with her breathing) to be a long journey.

I suddenly remembered reading someone else's blog (see Lindsey's blog at http://eviejayne.blogspot.com/2010/07/prodigal-daughter.html) a month ago or so, in which she shared her thoughts and fears about her daughter who has another form of skeletal problem.  I read her post and cried - and I realized that's what I need to do.  I need to nail my fears and burdens on the cross.  You see, Nicole is quite vocal and outspoken, and in her blog, she explains a lot about the condition our Maddy has, and she also shares a lot on how she's been feeling personally.  I, on the other hand, tend to be a bit more reserved and I'm not really that much of an open book for all to read.  I tend to let people only see the calm exterior, even though a whirlpool of emotions may be churning up inside of me.

Which makes this next part a bit out of character, but I also need to nail them to the cross.  So here goes:

I'm a bit scared.
Ok, I'm actually very scared.
I'm scared of not knowing how Maddy's breathing is going to be.
I'm scared of not knowing how to deal with Maddy's skeletal issues.
I'm scared that I can't control things.
I'm scared that I don't hold my destiny in my own hands.
As a daddy, I just want my little girl to be ok.

Lindsey also mentioned a Scripture in her blog which really spoke to me:

When I am afraid,
I will trust in you,
In God, whose Word I praise,
In God I trust, I will not be afraid.

                    ~ Psalm 56:3

So yes - I'm afraid.  The little girl whose medical condition frightened me 6 months ago is the same little girl I can't bear to lose now.  I'm afraid that my little girl will slip through my hands like a vapour in the wind...

But I'm so grateful that someone greater than I is holding my little girl in His hands.  Someone greater knows how it's all going to turn out.  Someone greater is the author of my little Maddy's destiny.  So while I'm scared that my hands are enough, I have a blessed assurance that His hands are larger than mine, and that He'll look after Maddy and my family.  Isaiah 59:1 says this about my God: "Behold, the LORD'S hand is not shortened, that it cannot save; neither his ear heavy, that it cannot hear."

So yes - I'm afraid.  But when I am afraid, I will trust in the Lord.  I will trust in Him and not be afraid.

Please continue to pray for Maddy that she'll breathe strongly and independently (without the need for any assistance), and that her breathing will stabilize very quickly.

Thank you all for the support you've been over this period.

Lots of love,
Bernard and Nicole (and Lana)