Thursday, December 4, 2014

A hard week and a faithful God

Monday 1st December. Brendon having his turn at being the play gym. :-) Giving me a bit of free time to get some more work done with the older girls. Last week and this week have seen me very busy with them. They both needed some extra one-on-one help with their History and Science (and Math for Rachel). I have enjoyed working through their lessons with them and have learnt much myself. :-) I am so pleased I have gotten to help them so much. I know it's going to be much easier for them in the months ahead. I also know that I am going to have to spend more time with Ruth on those two subjects on a permanent basis. It seems to be that she is an audio learner. So although her reading is excellent - she does better having someone read the lesson to her.
I helped Ruth create a "summary" of her last Science unit. I then went through that summary with her before the final test for that unit. She got 100% for her test. We were both very pleased. It's nice to know I have quickly worked out what is helping her.

Unfortunately on Thursday morning - just as I put Asher into her high chair for breakfast - she had a Tonic seizure. It was only about 2 minutes but this time her breathing wasn't as great as her lips when white. For those who are wondering - it's very easy to see these and the vacant seizures. They often start with little jerks (like this one did) or one big shock like an electric shock. If she is sleeping she will even wake up and lift her head up (how I have noticed vacant seizures through the nights before). Also - her eyes normally go up and often to one or the other side. With a Tonic seizure her neck is arched back and her limbs are very stiff. Even Hezekiah recognises the seizures now. They know to not get too close to her, but they do come and sit around her and I talk to her about everyone who is there with her. Hezekiah will also say "good breath" with me when we hear a nice big breath.
Children's photo taken on Tuesday. The middle three loved how Asher had her hands on her legs - so they copied her.
Asher was rather grumpy through the morning and then had a good sleep (in my arms). So I was not surprised when she was not tired after lunch (when she normally naps). I had really struggled in the morning though. I was glad I asked for prayer on facebook as I could feel how I was lifted on those prayers through the day. I was especially glad for that when she had another seizure, this time a 1 1/2 minute vacant seizure, at 2pm, causing her to go purple around her mouth.
These were my fb updates through the day:
12:30pm I would appreciate your prayers. I am having a very hard day.
Asher had a seizure this morning. That's the 4th one in the last 3 weeks. Today it just all feels too much. I know next week the doc will decide on a new AED to start. The reality is that I just hate this all.
BUT when I am weak then He is strong.
I know that the Lord will never give me more than what HE can handle. I sure can't handle this - and have not been able to for the last year. He however is my ROCK and I know I can hold onto Him through this all.
I need His help, every minute of every day. Today - even more so.

I really appreciated what Elke wrote:
Ah Belinda...bless you for being so candid about how you are Christians people think we are meant to always 'have it together', and be able to just cope, cos if we don't then our faith cannot be that strong...but I have learnt over time that, actually, we are allowed to be "weak" and feel overwhelmed and scared and worried, and sad and tired of handling what we have been given....and feel all the emotional things other people do. It is ok to feel all this - God can handle it.... And He can handle our anger and our questions... You are an amazing woman of faith, and encourage so many people daily...feel encouraged now in knowing that others are carrying you in prayer....I truly believe Asher will outgrow this - and if not outgrow it, God will heal her of it....we know He is more than able to do that....Thinking of you and praying for you, Brendon and Asher....xx
And then my update at 2pm: She just had another one. I am thankful for the prayers, I am feeling less teary now. I am also thankful that my precious Ruth is making me some lunch.
"Thank you Lord that your peace truly does surpass understanding."
7pm: Thanks for all the prayers. I am feeling so much better. I thank the Lord for His peace.
Yes, Jeanie - we really do pray that she can get the meds needed to help these stop. The AEDs still really scare me though. The first one she had this year had such a bad reaction. Causing myoclonic jerks and atonic head drops. Even the two that she is on now have their side effects on her. So it's just a scary thing to know we are going to have to start on a new med journey again.
I know God loves and cares for Asher even more than I do. So I pray that He would guide us and the doctors and I know that He has a good and perfect plan for her life.
God is so faithful. Even through these hard days He showed Himself so very faithful. As the verse says that Kerry shared: '..when my heart is overwhelmed: lead me to the Rock that is higher than I.' Psalm 61v2b.

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