9.27.2011

Dear Jesus, when did I become a judgemental, coldhearted, ninnymuggins?

When I was 5, almost all my imaginary friends where crippled in some way. I kid you not. They were in wheelchairs and had crutches and all sorts of silly things related to illness.

I never considered them 'sick'. They were just my imaginary friends who were in a wheelchair.

I had one of those hearts where I loved like Jesus. (I like to think...)

So when in heavens name did I become a judgemental, coldhearted, ninnymuggins? When did I start feeling awkward around people with disabilities? When did I start pulling away from them in crowded places? Was it taught, or is it in my nature?

When did I start thinking "Thank God that's not my child?"

When did my Jesus eyes go out the window?

The past few days I have noticed some people in the hallways of the hospital and out and about who are disabled. One man was mildly disabled, and two of them were severely and painstakinly visibly disabled. They were in mobile chairs, a woman with only the use of her feet and obviously unable to verbally communicate. She was writing with her feet while sitting in a wheelchair. The man was in a large wheelchair as well, he was just sitting there, looking at the ground, unable to lift his head. I found myself looking away- trying not to stare- stuck in that mentality that I didn't want him to catch me staring.

Today I was talking to God and I was asking him to help me see people through his eyes. I wasn't talking about the disabled, but as I sat down to write about that I realized that these were the few people that I remembered throughout the day. These were the people I had a hard time seeing through Jesus' eyes.

Don't get me wrong, I don't have 'judgement' towards them, but I do have an 'attitude'. The attitude was to go around them, to avoid them, to be almost mildly afraid of what they would say if they could tell me what a ridiculous jerk I was for treating them that way.

Jesus sees their hearts. He knows what they are feeling, what they think. He knows how they felt when I stared at the ground in fear of making eye contact with them and realizing that they caught me looking at them.

My son has Downs Syndrome. It could be severe or mild, who knows. Who cares? My son is beautiful and I fought for him- we fought for him. God formed all these people in his image and with his purpose in mind.

I imagine they are the people who see reality in a way that I cannot grasp. They know the truth- the raw truth. There's no covering up what issues they have with makeup or lies- there's no hiding.

If everyone could see my issues on the outside... I'm sure they would be awkwardly staring at the ground and fumbling by- trying not to make eye contact.

Its the people who see past my flaws and know my heart- those are the people who love like Jesus.

It's the people who can see past the external and the issues who love like Jesus. Imagine that.

:)

I hope I can be more like that person.

9.26.2011

Homesick but moving forward

I don't think I had any idea what I was getting myself into when I told my husband that I thought it would be great to have 3 children while I was young, so that I had little friends to hang out with. Okay, maybe I did. Maybe I would do it all over again.

I would. I definitely would.

But I imagined it a little differently. I imagined my 2 boys and 1 girl (Yes, it was all worked out) running together, playing together, dancing, singing, going to church. I would be super mom (as I remembered my Mom being) and we would have all sorts of fun family memories together, imagining, playing.

1 year ago today, I wasn't sure if Judah would ever get off of a feeding tube. I wasn't sure if he would ever stop aspirating liquids into his lungs. I wasn't sure if people would always be asking me 'what's wrong with him?'.

Then, God made a way. I know it was God because it was a chance happening that Sky mentioned that Judah's frenulum (tongue-cord, as I referred to it) seemed 'quite tight' and needed to be clipped. This little tiny tongue cord, this silly little thing- it was the key to Judah's difficulties. We think it was what caused him trouble in the beginning, although his laryngomalacia (floppy larynx) and stridor were scary- it might have not been surgical had someone just noticed this little thing.

Judah- he is thriving. More than thriving, really. He looks small still- and he is- but he is thriving. He eats well, plays constantly... nonstop- all day- and he is brilliant. I'm not just saying he is brilliant from a silly Mom view (okay, maybe a little)... But he truly is incredibly intelligent and percieves so much that it baffles me. He is adorable in every way. It's easy to fall in love with him- just like the day he was born. It is so easy.

Gabe is the one facing the challenges at this moment. The question today is- "will he need to be reintubated?" His life- we take it one day at a time. We learned a lot from Judah's experiences. We were ready for the hospital. We learned that much of what you see in a hospital looks scarier than it is (we hope)- and that you cannot kill yourself with worry.

I am so blessed to know a Father who loves me. I know that God has Gabe in the palm of his hand.

A few weeks ago Pastor Susie told me that God was squeezing Gabe's little heart- she saw Him doing it in a vision she had. Suddenly, shortly after she told me this, Gabe qualified for surgery. His heart that had not been squeezing adequately before... It began to squeeze marvelously. His leaky valve all but stopped leaking... He amazed all who saw him.

Our friend Ricy said that he could not stop hearing the words "Gabriel's Hope" in his head when he was thinking of Gabe. Suddenly, it was in my head too. God put it there.

Hope- Gabe- Hope- Gabe- Hope.

Maybe this is what steadies my heart on days like today where I can't imagine breaking away from chores and Judah to go to the hospital and be with my other little one. I enjoy greatly my time with Judah- but I have a hole when I am with him, and a hole when I am with Gabe.

Someday, when I have them both in one room- I will lavish them with kisses and bask in the ability to have my boys all together. All three of them.

Gosh I am so blessed.

For those of you who have been blessing us with letters, with love, with support, with words of hope, encouragement... I am listening. I take it all in. I take every piece in. I wish I had a computer in my room that worked adequately to type long- well spoken replies to you.

Thank you for showing God in your words, in your gifts... Just in your love and prayers.

<3

9.22.2011

Peace

I can never seem to finish these stupid bog entries... It's ike I run out of words- and then out of patience with my broken keys.

It's a miracle- the amount of peace Nick and I have felt over the past weeks. I think we dealt with a lot of turmoil when we were diagnosed prenatally. Back when people were praying for healing directly from God- I was preparing myself in case God's plan wasn't in that direction. I was in a giant amount of turmoil through the pregnancy, off and on. Crying and feeling despair at moments... But preparing.

I think perhaps I mourned over my idea of a perfect situation long enough that when the time came- I was as ready as I could ever be. Poor Nick, having to hear me going over and over how hard it was going to be and how I was never going to be ready.

So far, I've had one day where the depths of despair hit me. Day 3. And the rest of this time has been spent in waiting, hoping, praying, begging, and of course with Judah.

The thing that is bugging my head lately is the future- because we have no idea where in heavens name we will be in the months ahead. We come back for the second surgery in March (or earlier) and our lease is up in January.

This has kept me wondering... Why did I get an upstairs apartment? Why? Can I even imagine the appointments (3-4 a week for Gabe)- going up and down stairs with two- and possibly a feeding tube set up, getting them in the car. You can't eave one alone in the car where you can't see them... This is my stress right now. Haha...

Here we are recovering from surgery- the bumps hitting us and my big fear is how I am going to get my boys in the car for appointments. Silly me :).

Nick and I were discussing how much amazement we have that we feel peace right now, when our family members have such turmoil still. We prepared ourselves to fight for our son. We knew that staying awake all night and not resting when we needed to would not change his outcome. We told ourselves that we would take it one minute at a time.

The reality is, after all three surgeries, his expectancy is 15-25 years. He will not qualify fr a heart transplant because of Downs Syndrome (Trisomy 21). HlHS is not a heart defect that can be fixed.

So... We are not waiting for them to fix him. We are enjoying his life as it is. We are thanking God for each minute, each day, each week, each month, each year, and so on.

9.18.2011

Frozen

Yesterday Nick and I went to Kohls. It was incredible- simply because it felt like we were back in Boise for a moment (we went to Kohls quite a bit when they were mailing us 10 dollar gift cards :)). We bought Judah some warmer clothes, and enjoyed each others company.

Judah is spending the weekend with his grumparents. (grumpa and grumma)

Nick and I can't figure out what happened to summer. We lost it somehow in all this craziness. We remember a few warm days, but most of our time was spent inside, keeping Gabe baking away.

It feels kind of like we are stuck in a snow globe- looking out at everything on occasion, but mostly stuck in our own bizarre world. The flakes pick up occasionally, and we forget to look out at the outside world when that happens.

Gabe is doing well. His sats are up a bit, but we are still not entirely in 'recovery' yet. When his swelling goes down and his chest is closed, that's when we expect to be in the recovery stage.

Nick and I prepared quite a bit, you know. We haven't been shocked by most things. We researched, we read, we connected with families who had already been here- and we saw pictures. We knew that he would be covered in wires and tubes and have his chest open. Maybe that's why I wasn't ready for his birth- because I knew the journey we would be on.

It doesn't phase me. Maybe something is wrong, but I don't notice the wires, the tubes. They are the small things. They aren't really there for me. I notice his hands, his eyes, his ears, his toes- his hair.

more to come...

9.09.2011

Hard to Say

I haven't posted in quite a while. This is mostly because of the frustration that comes from having to copy and paste a my o's and l's.

Gabe is more than impressive. His heart function was so bad on his first echo that he did not qualify for surgery. Prayers were sent out, and his heart function improved to near perfection. I am so proud of him.

Judah has grown substantially during our time here. He is earning words, balancing very well- and enjoying a the hospital faces. He brings joy to so many with his high pitched squeeling while running down the halls. He is my sweety boy, I am so proud of him as well.

Gabe is 11 days old today. Nearly two weeks. His first surgery will be on Tuesday, most likely. I can imagine that waiting in the hospital- not knowing- will be the most difficult part...

More later...

9.02.2011

All of Me

Matt Hammitt's song "All of Me" is about his son, Bowen.

Bowen inspired us with such great hope for Gabe.

www.bowensheart.com
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