Thursday, December 27, 2012

Heavy Load .. Apologize in advance


I honestly delight in knowing my positive outlook helps others. I am filled when others say “you give me perspective”. I live with the mission of taking what we get and seeing the good in it and sharing that good. We've been through a lot. Not anymore than anybody else, we all have trials, but I think it is safe to say we've been through our trials. And I am not even saying I am an optimistic person, because I am not. I am a realist. My husband says pessimist, but I totally disagree and call it realism. I think when your heart has been broken more times than you can count; you are always waiting for the other shoe to drop. At least I do. But even as a realist, I still am able to find the good and share the good. I don’t think I would survive without it. I know the light is from God and I am just glad I have figured out how to find it. I know without that light I’d be a wino living in a dumpster. I have that tendency to find a place where my troubles won’t find me and I am so glad I found a light that keeps me from that dark.

But with all that said, last night sucked. I honestly went to bed last night wondering if Lily would wake up today. I think I knew she would, but it didn't keep me from waking up constantly and going into her room to check on her and basically annoy her by waking her up, touching her making sure she was breathing. Her seizures were so bad last night they surprised me. And that is not easy to do after 10+ years of dealing with seizures. After they settled we just sat on the couch, I held her while I watched Parenthood on Netflix while Oliver ran amuck. Andrew and Andi Jane headed up to Greer early so it was just us three at home last night. But my mind started racing, and no good was being found. Yes I was able to snuggle my 10 year old on the couch while she slept. Who gets to do that? But I couldn't help but think she should be up north with her dad and sister planning on going snowboarding. Not sleeping in her mom’s arms because the seizures have been relentless on her body and she is so exhausted a loud 3 year old doesn't even jostle her. Yes I was loving the cuddles, but she is so passed out it probably didn't matter if she was in my arms or in her bed. I had to think about Lily and this disorder that had completely changed our entire beings. So much to be thankful to Lily and who she is, but so much to feel angry towards as well, and I know anger is secondary and it is secondary to my sadness that yes I know life isn't fair, but does it have to be this unfair?

I think about the kids with cdkl5, rett, cerebal palsy, md, ms, angelmans, etc and I just say, really?
I think about the majority of kids with rett and other disabilities and those who have passed away mostly do it in their sleep. Or in a hospice. And I think is this what we are waiting for? A morning she doesn't wake or a long drawn out awful process in hospice. And I think again. How is this fair?

I think about how on Dec 20th we went to meet a Palliative home care team and social work team. I know they are for our good and will help us make choices that only benefit Lily, but I think about the meetings we have coming up where we make decisions that we will place on a virtual shelf and pray we never have to bring it off the shelf and actually put these choices we made during sound mind to action in a time of chaos. I know we are doing the “right” things, the “responsible” things, but then my breath hitches at the thought that we are making decisions no parents should ever need to even remotely think about. These are things you talk about regarding your grandparents or parents. Not good things, not happy things, but in the true cycle of how life is supposed to go, things that are of this life.

So last night after a really crappy night and followed up with a pretty crappy morning, I am not seeing or feeling the light. I am sad. I am overwhelmed and I desire to drink mai tai's on a beach somewhere far away. But because I am a woman of God who knows and truly believes all things work together for the good of those who love him, I know that even these times that I am not shiny and happy, I am still loved and grieved with. And understood for not faking it and maybe even loved a little more for being honest about it all.
It’s hard leaving a post like this. I realize the darkness of it. I realize I am saying things that are only thought about and I am sorry for that. I know that my outlook seems grim, but my heart also knows that we love Lily with a ferocity that is undeniable and we will love her for as long as we get. I will love all my children as long as I get to. No days are promised. Nothing is promised here on earth. We see tragedy happen when innocent kids are sent to school. Life is not fair. Loving others can be the most painful experience we will ever have the pleasure of experiencing. I'm just sharing my heart today as it is fresh right now and things have been brought up to us recently I have been happily blind to. I am sure I can get back to my place of oblivion, if we could get these seizures to chill out. Lily is so healthy. I'd dare to say healthier than anyone else in our house, she kicks a cold faster than any of us. She is a strong little girl. I have to say it's the seizures that keep me in fear. So my praying friends please remember her in your prayers. 

I know people will want to share words with me of love and support and I appreciate them so much, I relish in them. But know I am ok. I am just having a bad day. My heart hurts and it needs to heal, again. My heart is always healing and I’m glad it is able to do that. I get another evening with just my two kiddos and it will be what I need.  If you are a praying person, pray for Lily to find relief. We are used to seizures but when they attack her one after the other it is a lot on her and it is a lot on us who love her.
Thanks for reading and thanks for loving.


Friday, December 21, 2012

Another Year Older... Wiser?

It's been crazy. Like I haven't rested this week until my butt was in my bed by 10pm each night and up and at em at 7am each morning.
This week I became another year older and I pray wiser. I was a lucky girl to celebrate that event with very important people in my life. I also celebrated Christmas with some moms I never would have survived Lily's "condition" without, they have been with us from the very beginning. We got our passports ordered and hopefully will be here by February so the Make a Wish trip will really happen. We watched Andi Jane delight us as she played Mary in our church play. We had a pretty important Dr. appointment for Lily, meeting a new team in an effort, we pray, that will make the future easier for all of us. I am pretty sure we could have used this team a long time ago, but so glad to have this now. I will go into further details later. I just recently got this kick butt computer for my birthday and so I can now solomonly swear that updating this blog will come back to a priority. Even if no soul reads it, I need this for my sanity and I like to look back at this crazy life we live and see the seasons we have all weathered. I feel that 33 was a blessed year for me. A solid relationship with my husband, new friendships and amazing old, a family that I know I am so lucky to have and no drama and I owe all that to my relationship with Christ that I have continued to deepen and feel so amazing about. I spent so many years "knowing" God and am inspired to spend the rest of my years Loving God. Living for God. I know I have many friends from all walks of life and I know not everyone agrees, but the important thing is I am not that insecure 17 year old girl that withheld anything from others if it made me look less cool. I am now a 34 year old woman who is cool by the standards that matter to me. But I will never be that judgy christian so many nonbelievers think we are. I have walked a pretty muddy path, I have many things I wish I chose not to do, I don't live with regret, I am thankful for that mud that got all over me because with out it I would never know what it feels to be clean. I desire to live like Jesus. I want to invite everyone to my table. I want the unloved, the sad, the sick, the dirty to know they are more worth than gold. I want my life to be a reflection of the one who first loved me.
This has been a great year, and no matter what this next year brings, it will be a great year as well. I am learning life isn't about what is dropped on our door step, it is what we do with it once it is in our home.
This upcoming year will be a year with vacations of a lifetime! A trip to NYC with my mama to see all my CDKL5 mamas "sisters"! A Disney Cruise with my most awesome hubby and kids. And maybe something else, who knows. I love the anticipation we have with each new year. Wondering how it will be. Our baby will be 4 soon and it feels like we are embarking on a new world of parenting. Our baby is 4. I have gone 10 years always with a baby under 4 it seems. Now there are no more babies. It's weird. Sad, but happy. But isn't life just like that. Happy with one thing, but it makes you sad on the very same hand. New things make us sad for the old. At least me anyway, I am an old sap.
So anyway, cheers to a new year! Merry Christmas from us! The crazy households of the Nordy family!



Friday, December 14, 2012

Praying for many today


This morning was a little different from the others. For starters I woke up to Oliver’s cute face. Oliver has been having a really hard time falling asleep in his new room and last night fatigue won out for me so when he came into our room and asked to cuddle I said “come here” and rubbed his sweetness until he fell fast asleep.  I woke up, saw his face and kissed it lightly before I rolled out of bed with 2 hungry, so excited she finally woke up so we can eat, dogs following me downstairs.
I catch Andrew before he leaves for work bright and early I gave him a big long hug and told him I am praying for him. We got real backed up at work and he is putting out a lot of fires are trying to manage to finish these jobs in half the time. He said thank you and kissed me goodbye.
Then on to getting Lily ready. She is always the first I get up, dressed and fed before I wake the others. This morning I sat on her bed with her. Her mood was gentle and sweet. She wasn’t whiny or sad. A lot of times in the morning she is a bit on the grumpy side, but not today.  I asked her how she slept and if she approved of the outfit I picked out. She was quiet which I took as I did well. I sat her up to change her shirt and she leaned into me. I took that as hug time and there we sat, I’d say for a couple minutes. Lily doesn’t generally hug. She will cuddle on your lap but body to body hugging typically leaves her squirming. But there we sat, her cheek against my shoulder and my hands rubbing her back. I decided to pray with her for her day and rubbed and kissed her some more. Then I said Lily we better get you ready for school and went about our morning in the usual way.
Next I holler up to Andi Jane if she is up, she was and was getting dressed. She came down stairs and I, in the mood for hugs, tackled her with a big hug that she wasn’t necessarily ready for or wanting. I said we always have time for hugs and smiled at her. She giggled. I walked her a few houses down to school and when we parted ways she hugged me hard and gave me a big kiss.
Then I woke up Oliver and he was the grumpiest of us all today, but in true Oliver fashion a couple tickles and he is over it before he remembered why he was grumpy in the first place. He got in the bath, dressed, ate a little and we were out the door. While standing at the front door of Ms. Nancy’s house we knock and Oliver squeezes my neck so hard. Like a hug that cures all type of hug and held tight til she opened to door and we parted ways.
I drove off to work thinking, I held each one that is my world tight today and if anything happened I can say I had a special moment with each and every one of them.
Then I got to work and saw a breaking news email. Said approx. 20 kids killed in school shooting (it was early, not a final report) and I said that can’t be right and read. And cried. And prayed. And I prayed that those parents had that kind of morning I had today. If nothing else I prayed they hugged their precious child that they assumed was safe in their school as they said goodbye. Please God, don’t let their morning be like some of mine where you just want to do it all over again the next day. Please God don’t let it be because they won’t have that next day.
Oh God my heart is broken. Empathy is crushing me today. Your ways are not always known and finding good amongst this much pain seems impossible. I have no words to say if I could to these families. I just pray that your will is good and you are near the brokenhearted and crushed in spirit, please let these families know you and see you in these days that the thought of leaves me breathless.

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