Days 53-57

A kiss from her big brothers!

Really, I don't know whether I am Arthur or Martha these days (although, I'm pretty sure it would be more likely Martha, or I'd have a serious problem!). On Wednesday we moved home, and it's been amazing back home. Miks didn't like the move so much- as she ate terribly on Wednesday- she definately doesn't like too much going on around her. But by Thursday she was settled, and had a great day of feeding. She's definately grown some.... she's got long more than anything else. I just wish she'd also get wider, because then she'd fit into more of her clothes than she currently does. How is it that all the 0-3 months clothes are so differently sized? I guess that's a blessing in some ways- but it can also be terribly frustrating!

We all don't know ourselves with all the space we have. Luke and Josh are in their own rooms, and of course Miks is in hers. We've learnt a new trick: because Miks is so fussy about the temperature with her bottle, we're always having to reheat her bottle, or constantly fill up a cup with boiling water to sit the bottle in to heat it up.... which then gets forgotten about, and ends up too hot, so then we have to cool it down... it's a real dog show! Anyway, Russ figured out that if we put the bottle on the heater while burping her, it keeps the bottle the right temperature, or rather doesn't heat it up too much that we have to cool it down. It's like our own personal little bottle warmer (can't market the idea unfortunately, as it's not terribly practical, since you can't fit a heater in your handbag... and besides, there is such a thing as a bottle warmer... nifty things!). Now I've just got to find a way to keep my tea warm.... I always forget about it and end up having to drink cold tea. Ugh!

Miks has really been up and down most of the week. She definately battles with a certain amount of constipation, which effects her feeds, because she gets desperately hungry, but when you feed her, the minute she starts drinking she fights the bottle, because she is all stuffed already since she hasn't got rid of all the previous feeds (er... pood!). I just feel so sorry for her. I hate feeling so helpless most of the time. Like I cannot really help her that much. Obviously I can help alleviate some things, like occasionally giving her a supository to help with the pooing, but I cannot essentially change her "disease"... cannot help it, make it better... nothing! They say "better the devil you do know than the devil you don't"... and sometimes thats what I feel like with Miks, that this "devil" that courses through her veins in every cell.... this sneaky little disorder which creates havoc amongst her cells ability to function properly... is the devil we don't know. Even the doctors don't know!

Her unhappy face! Mind you, with me dressing her up in all my hats, I am not surprised she was unhappy!

I also try savour all Miks little milestones, but just wish she would also show some of the more normal milestones like kicking her little legs around, smiling, following me with her eyes around the room all the time, turning her head to my voice. All these milestones that I took for granted with the boys, I wish so desperately for Mikayla. I am trying to enjoy her for what she is, rather than what she isn't- but at times, having a comparative view, makes it not terribly easy.

Had a frustrating day today feeling a little "ungraceful".... sometimes I just don't want to hear anyones ignorant advise. When I have the specialists, doctors and geneticists telling me one thing, I find it terribly unhelpful having people's well meaning "professional opinion" on Mikayla's condition. Surely if the layman had things to tell me, the doctors, and other people who have been in my position, would know about these things?! I mean.... I just want to say sometimes "get over yourself!" to these people. But I know that realistically I am the one who has to get over myself. Pull myself towards myself, and just take the "advise" as well meaning rubbish :-)

A lesson I have learnt though, is that sometimes my opinion, or experience, as much as I may think it will help the next person, doesn't actually always help. And perhaps sometimes the most helpful thing we can offer is an ear... NOT a mouth.

"Reckless words pierce like a sword, but the tongue of the wise brings healing" - Prov 12:18

Definition of "reckless": very careless; acting or done without any thought of the consequences

Definition of "wise": Having the ability to discern or judge what is true, right, or lasting; sagacious

Definition of "discernment": The act or process of exhibiting keen insight and good judgment.

So, to elaborate on the Proverbs verse, using the dictionary explanations, we could say:

"Careless words, said without any thought of the consequences, pierce like a sword, but the tongue of someone who has discerned what is true and right, through good judgement, brings healing".

Hopefully I can learn to be more discerning in my well meaning advise to other people, so that I am not inadvertantly hurting them- which I am learning is too easily done!