12.12.2012

Patient Advocating

Nick and I have a huge desire to create a pamphlet for hospitals to give to parents who have children with high risk conditions and complex situations.

That's because, when we walked into the role of these parents of a very high risk medically complex child- we didn't know who to turn to or how to turn. We had thought all along that our advocates would be our doctors, but it turned out that WE were our main advocates. Over time, we found that there were other advocates available too, other options and many avenues to pursue... But when you are in a critical life and death situation, it's hard to research those avenues- nevertheless find someone to help you proceed in the direction that you want to go.

Our pamphlet wouldn't have to be completely chalked full of our own experiences, because that's not what we want. We are very aware that there are many MANY options to choose from when it comes to caring for a complex child... Compassionate care being one, and surgical intervention often being another- but there are so many choices thrown at you in such a little time and unless you build yourself a backbone instantly- you don't know that it's within your rights to speak up LOUDLY on behalf of your little one.

Compassionate Care doesn't mean giving up on your child- which was hard for us at first to realize. It's a choice that families seriously need to consider when it comes to prolonging the life of their child or allowing them to be at peace.

Compassionate Care means one of two things.

1. Taking your child home and making them as comfortable as you can while you spend as much time with them before their condition deteriorates and they pass away.

2. Taking them home might not be an option, so making them as comfortable as you can in the hospital while also allowing them to spend their last moments in the way that you as the parent want to see them spent.

It is not giving up, it's choosing quality time over quantity. It's definitely not a wrong decision when your child is born with a complex medical condition. There is no right or wrong here. Some parents do not want to put their child through surgeries and possible pain knowing that they have low odds of survival or poor quality of life.

I do not advocate strongly for this position, but at the same time, I completely understand the choice. There were times I had wished that we had chosen this in the beginning, watching Gabe be intubated and remain very ill and knowing I couldn't take him home and just love on him while we had him was very hard. He could have not survived his first surgery, and I would have wished we hadn't put him through it at all if we would have lost him. So in complete understanding of that position, I have no judgement towards parents who choose it.

The second route can be the most challenging and most draining choice, but it's in the hope and belief that fighting for your child's life is important to your family, despite what the odds or percentages say.

This is the route we obviously took for Gabe.

It comes with a lot of push back, especially if your child has Down Syndrome (in hospitals where they do not understand the quality of life for a child with Down Syndrome, especially  where there will be more resistance for treatment) or other chromosomal conditions.

The first thing you should know when choosing this route is that there is no point where it is not okay to change your mind. If you decide that your child has been through enough, that your family cannot endure more surgeries or more traveling- it is okay for you to choose compassionate care at any time. That is something you must know. It does not make you a bad parent to choose that for your child, and it can become an option at any point that your child is not doing well and the road does not look promising.

The second thing you should know is that there are people who will listen and advocate for you. Many major hospitals now have incorporated teams called PACT teams. Patient Advocate Care Teams. These people will not judge you. What they do (and often times there is a hospital pastor of some sort on the team) is get together with you and your family and get to know you- they get to know your child and they find out the wants/needs/hopes you have for your child. Then, at any time, you can call them into a conference with your doctor.

The PACT team will take notes of what the doctors say and they will ask questions on your behalf that you yourself may have forgotten to ask. They advocate from your perspective and they help unite yourself and your child's care team's thoughts. You can have these conferences as often as you need them.

PACT was INVALUABLE to us both in Seattle and in Boston. We didn't call on them in Boston until towards the end of our stay, but they helped Nick make the choices that he needed to make when it was apparent that Gabe was not going to get better. They do not push their beliefs on you, which is very important, but they will honestly fight with you for what you believe is best for your child.

PACT will help you talk to your doctors and push when your doctors don't seem to be understanding you and your child's needs. Every time we worked with PACT, we found ourselves more at ease with the care of our child and more understood with how we wanted him cared for.

I cannot stress enough, if PACT is available, ask for a meeting with them. Get to know them, and utilize them at every chance you can.

If PACT is not available, there are also social workers. It sounds scary the first time you hear the social worker wants to speak with you, but almost all of the time, they want to talk to you about your family and how you are doing. They will work with your insurance to help you find housing, they can help out with food expenses at times, and they often times will drop by a bag of snacks or goodies. They can help you get on state assistance programs, find housing (shared, even) and even help with transportation needs.

12.08.2012

She could be my daughter...

It's amazing how God works on our hearts throughout our lives. Somewhat mysteriously, at times. You know the times I'm talking about- where you are holding on but waiting for something (anything) to make sense.

Nick started a job at a care facility as a CNA recently. He comes home and talks to me about all his residents and the funny things they say and the scary things that happen- and some of their stories... And I am subdued by each of them- like I know them personally after a week of these stories- so much so that I cry for them and I ache for their families.

We've seen a lot of this kind of care with our family recently, people getting older and families having no choice but to put them in full time care because they can no longer care for them alone. It's the most difficult part of life, almost so that I told Nick I don't ever want to go through it and I hope lethal injection is available by then. It's so hard on families to do it, and so hard on the people in the care.

One of the residents is a woman, about 30 years old. She is severely disabled, blind and cannot communicate. Her story will make you cringe, as it could happen to anyone.

She was left in her bathtub alone around three years old for too long. Who knows how long too long was, long enough for her to suffocate and have severe brain damage. She had no issues up until that day when her life and her families life was drastically altered forever.

Now, she cries most of the time- except when her family comes to see her. On that day, they brush her hair, they braid it, they talk to her, they make sure she is clean... and she knows she is loved on that day. She doesn't cry that day. Her family doesn't know this- that every day they don't come is full of her tears.

A girl who cannot communicate can communicate in the language that we all speak. Love.

On that day, she feels loved.

"That could be our daughter." I told Nick, tears in my eyes. "That could be anyone's daughter- in the blink of an eye."

Then, I pictured in my head a woman we met in Boston with a disabled child who she cared for at home- she said he didn't communicate but that she knew that he knew they were there. He knew he was loved. She kept him at home and had home care come for 10 hours a day to let them attend to their other child and other activities. They took him bike riding, they took him to the park and let him go through the fountains, and though he couldn't say it, they knew when he had a good day and when he had a bad day.

As I've reflected on that moment with Nick- that moment where that woman was my daughter- I realized how important God's love is in our lives. How important loving each other is.

We communicate love. Those words you say every day, mean nothing, if you aren't taking the time to communicate love in a tangible way to those around you. Nothing can thrive, no one can thrive, deprived of love.

This has been hard for me recently. Living a life focused around survival and feeling that my purpose was to my son's and no one else left my love language and my marriage both oddly worn down.

My love language, once so much more developed, has taken a beating over the years- and my heart has accepted that I cannot love everyone as much as I wish I could. I push and push with words and they get me no where unless I commit to loving someone where they are at.

Today, your love towards someone around them is going to make an impact on them that will not be visible to you. Accept that, and love them anyway. Make an effort to prove to someone that they are valuable and worthy of tremendous amounts of love. And if they don't respond, if you don't see it, it's not a failure.

The failure is when we stop trying to love- and we don't see the impact that has on those around us.

The people who go home without receiving or communicating love are like this girl on the days her family isn't there. She can't say love, she can't know why it is she feels so deprived of it... But without love, hope can't grow. Destiny can't be fulfilled. Promise can't be understood. Healing can't begin.

12.02.2012

Down Syndrome

There's a lot out there on the internet regarding Down Syndrome.

A lot of it is Mothers or Fathers who have children with Down Syndrome describing their fears and the loss of their dreams and how their lives have changed in a positive manner because of their unexpected blessings in a unique new life.

Some of them are people making fun of Down Syndrome and "Retarded" Children and laughing at how their intelligence compares to their own (a sad ego boost for people who need to justify their own self worth by putting others down)...

And then some of them are people who are trying to justify their choice to terminate their pregnancy because of a Down Syndrome diagnosis.

All of them share the same context, Down Syndrome starts out as a scary mystery.

At first it's mortifying, to realize how little you know about Down Syndrome when it is such a common occurance among young and old and rich and poor.

Somewhere along the road of fears and confusion, playing the blame game (or having people in your family play the blame game... "Well there's nothing like that in OUR family.") happens. Stop that.

For those of you who are dealing with that... Down Syndrome, 98 percent of the time, has NOTHING to do with inheritance or family history. It just happens. No one knows exactly why, though lots of people tend to guess, but it just happens. It has no pattern, it happens the same among the poor and rich and young and old.

And it's one of those mysterious things that you don't need justify or blame.

I try to be sympathetic to those who go into the depths of despair, because I myself have been known to go there from time to time- but it's important to realize that a diagnosis of Down Syndrome does not change who your child is.

Your child will still look like you and your spouse. Your child will still have a personality all of their own. Your child will also have traits related to their Down Syndrome diagnosis.

Some of these traits are breathtaking. Like the brush-fields spots in the eyes- speckles of white stars throughout the eye color turning the eyes into a star system all their own. Toes that are perfect peas in a row.

Some of them are just funny. Shorter arms that make it harder to grab toys at first... (Gabe couldn't reach his hands to the top of his head when he was newborn... But got there over time.

Your child is a miracle.

70 percent of pregnancies with Trisomy 21 abort themselves in utero. Your baby had a thirty percent chance of surviving to birth, and they did it!

50 percent of babies have heart issues, usually an issue known as an AV Canal Defect- but sometimes as simple as a hole in the heart that goes away on its own, and sometimes more complex.

30 percent of children with Trisomy 21 will develop Leukemia.

Staring at these odds, looking at your little one who has beat them (or is surviving despite illnesses related to Trisomy 21...

You are lucky you ever met them.

I was lucky I ever met my son, Gabe.

Mr. 1 percent chance of survival past his first operation... Well, take that statistics!

You can't have a rainbow without a little rain.

So this is for you people out there holding miracles or waiting on them.

Check out "Trip to Holland" and be thankful for your chance to meet your little one tonight.

I know I am.

11.27.2012

3 months. honesty.

I try to remember that somewhere, someone wishes they had the things that I have. Not the loss, truly, but what came before.

Sometimes it feels silly to say that. Someone wishes they had a tiny baby boy who they barely got to touch before he was taken away and then intubated and filled with drugs to keep him alive... Only to have his eyelids flip inside out for no reason and not be able to see those little features you saw for a millisecond when he was born for another month... and then to be told surgery was for nothing and you should let this baby who you barely touched die... And then to fight...

Nobody wishes for that. It makes me sick to think about all the times I wished so hard I could rip out tubes and run with my baby as far as possible from the mess that medical facilities made of my small boy.

But for the moments when he smiled, stretched out on the bed... inbetween colds and hospital visits and medicines and feeding pumps and g-tube changes and crying and surgeries... People wish they could have it.

I wish I could have it one more time. Just those peaceful moments staring in awe at the little boy that we fought so hard for.

The last four months of Gabe's life were my worst nightmare come true.

I can be honest about it. I am not grateful for those moments. I felt like four months of his life were stolen- watching my son be still- and then wake up so drugged that he couldn't lock eyes on anything... not me, nothing.

Then finding out that his brain suffered atrophy, and that he might not return to us again in that same baby way... and then after all that fighting- to find a stupid infection was taking over his body... to have to make the choice to let our son die as peacefully as possible instead of letting him die a long drawn out death.

I hated that hospital room. I hated being there, helpless to do anything. Feeling nothing in return of my hand on his. Watching his oxygen saturations drop to those of a dead child and then have them fixed only to watch it happen again... To watch him die over and over and over.

It was close to torture. To long so badly for him and to not be able to hold him against my skin or to feel his body against mine. To wish to only see his eyes open and look at me and to be continually denied that... to be denied his smiles and giggles for the rest of my life.

It was torture.

And I had to keep reminding myself that it would all be worth it when he was whole and he was complete... But I didn't know if he would be 'Gabe' when it was all over or if he had forever lost that spinny sweet baby in my pictures.

Judah didn't do well in Boston. Maybe he could feel what I was feeling- but his tantrums were so often and so bizarre that I felt like I was failing as a mother.

I felt like I was failing as a mother to two boys, not just one- and I felt like I was losing faith that God's hand was going to move and rescue my son.

But I hoped, and I clung to the belief that we had chosen what was right for Gabe... Hope.

Boston was beautiful, and that is what I was most thankful for. Though my world felt like it was falling around me to pieces, to walk around Boston was to take a walk around peace and beauty and love... Painters on the street, every building looking like the architect who built it fell in love with it.

But then the sting of empty arms.

Watching Judah sleep was the most peaceful time for me, knowing he was safe and I was doing my best to be a good mother to him.

But he needed more, which is why I took him to Boise. I needed him to know everything would be okay. I needed to know everything would be okay.

Boise held no answers for me. I slipped into a numbness that could also have been self preservation. I kept on trying, kept on trying... But everything felt like it took so much of me to do. Getting up, showering... I was in an emotional coma.

I felt God, but his whispers were always only a gentle breeze of love to me... Not a gust of hope or of promise like I had felt when Gabe was born.

I felt worthless in those moments... Knowing that as a mother I could not save my son or make him well.

We had moved Heaven and Earth with our insurance company trying to get Gabe to Boston, went through every route... been turned down and rejected and then started from scratch.. Only to find that this route would lead to the loss of my son.

After watching Gabe slip in and out for four months, never completely coherent or himself... Five months rolled around and we had grieved Gabe's presence. We had not grieved the hope that he would return... But we no longer had a baby at home.

We bought him little outfits with a great amount of promise and hope attached to them. We were told of visions of Gabe as a bigger boy... and I saw them too in my heart. I saw my baby toddling around.

So when Gabe died, packing up those outfits was the most painful moment of my life.

Those hopes and dreams were gone... and grieving for them was more than a moment.

Grieving for them would be for a lifetime.

Every baby with Down Syndrome is Gabe to me. I want to run up, to hold them, to kiss them, to get to know them like I would have gotten to know Gabe. I want what I will never have- the boy who we fought for.

But moving on has proven difficult. A part of my mind is still in that self preservation mode, and breaking out of it is not only exhausting but impossible.

Relationships were taken off the table for us for a long time. Our sole focus was Gabe and Judah and keeping Gabe healthy and Judah happy. We spent very little time with other people, and we forgot how to have healthy relationships with others.

So distancing myself has become so much easier than trying, and I know breaking out of the cycle will be difficult beyond measure.

To break through the toll that the past year and a half had on us will take a miracle on it's own.

So heres to miracles. and honesty.

11.09.2012

Dearest little Gabe

Oh my little love, little sunshine, tomato faced boy.

How I miss you so very much and wish and hope for the moment I get to see your sparkly eyes again. Photos just couldn't capture them... not the way they really were. Not the way you were. I look at the photos but they don't hold you for me. You were touchable, soft and mushy- not like a photo- so still and so without life.

I remember the first time I heard your heartbeat. I was only 7 weeks along! They said it was probably impossible to hear it yet, but there it was, strong, steady, galloping. It always sounded like you were riding a horse in there.

Did you know your heart started beating when you were only 21 days old? All the cells that would make your heart began to dance in a beat, a dance, even though they hadn't formed your heart fully, they knew the beat already. You danced into existence.

How amazing is it, that cells that were laying there, doing not so much but waiting, suddenly jolted into life, sprung into action and knew the dance they had to do- even though they were not connected yet, they all danced together. It amazes me, perplexes me, how it all works.

Some  people think that because your heart formed imperfectly, because your cells formed imperfectly with an extra chromosome in each, you were a throw back, a throw out... a mistake of nature.

If only they could see the way I see, and their hearts would bleed for even thinking such a thing. Your life was of more value than I can even begin to imagine.

Because of you, I know what a blessing it is to hold a baby and know that they will be okay if they fall asleep without oxygen- and that they probably won't get sick tomorrow with the flu and need to be hospitalized. I know, because of you, that it's okay to count someone elses blessings for them, even though I wouldn't tell them that.

On Reeces Rainbow there are a few baby boys born the same month as you. I see them and I want to meet them, to see what they are doing and what they are like. To see what you might be like- what you might be doing had you never been born with a half of a heart.

The pain of missing you is still an ache that will never leave- but I am not in shock when I wake up anymore- I am not in shock that you will not be here- you will not be coming home.

We grieved your presence in the months you were in the hospital unable to look at us and smile... but we didn't grieve you as a loss. We knew you could get better, that you could come home.

So now we have grieved that, and now we know that you aren't coming home- our subconscious knows that you are home somewhere else, but you aren't coming to our arms here on this earth.

I learned a lot from you.

1. Give without saying.
The Bible taught me this a while ago, but as we went through this journey we had a couple people who gave to us, and expected us to never forget and to kiss their feet from then on. Receiving has never been a specialty of mine, and when this happened I realized something. I should give without boasting, in silence, and without expecting anything in return. Not love, not money, not loyalty. How could I burden someone else through giving? So I gave to several people throughout the process of learning this, and I will never say why or how much or who. And I don't care if they never thank me or speak to me again, because it's not my money to give, and it's not my heart to give with take in mind. Giving should be gracious, as Jesus gave with no expectations, but only hope. Hope that love would be seen in it, and only love.

2. Be gentle with your words.
Some people said things that were hurtful, harsh, and not always to us, but to other families we know too. Someone said "It's for the best." When you died. A few someones. I don't believe that your death was for the best for us, but I also know that they meant it not to be hurtful... but words need to be gentle. Gentle touches. You cannot love someone with logic. You love someone with humility, grace, and with listening. Logic is beyond all things when grief is present. Only love can conquer the pain of grieving, humbled, gentle love.

3. Forgive, lots. Don't be bitter.
And when these things happen, forgive. Forgive the people who hurt you when you are hurting. Forgive the people who say something they shouldn't have, or something that they didn't intend to hurt. Most people only mean kindness with their words during grief, they are looking for a way to relate. So put yourself in their shoes, if you can. Try to see from their view, and assume- as much as you can- that their hearts are in a good spot.

4. Don't be afraid to hope for the future.
In moments when I feel strong, where I feel ready for what should come after losing you- a look or a sentence brings me back down to the point where I feel hopeless and fearful of the future and the 'mights and maybes' of what could happen. Especially when I think about another baby- though doctors and nurses say it won't happen again, I can't help but get pushed over by fear occasionally... but then God reminds me.
Fear is a liar.
Evil is in fear, fear is in evil. It's meant to stop us from moving forward, to freeze us, to choke us into standing still. But we are not given that spirit by God, and we are made to conquer it.

5. Faith doesn't mean always understanding.
I don't need to understand anymore, why you died and why you had half a heart and why you didn't get better. Because I am not meant to decode that. I am meant to love you, and I can't love you if I spend my life asking why you had to die. You aren't gone forever, and that's enough for me. I don't understand why some get better and some die, and that's okay. I understand one thing. 1 percent is pretty bad odds. And you got better from that 1 percent. You came into my arms and you stared at me and you and I fell in love as a Mother and baby can. And my faith tells me that the miracle was there. My selfishness desires more, but my heart knows those months were a gift.

6. It's okay to feel the pain, and it's good to write it down until you can't write anymore.
I hope that everyone who goes on a painful journey writes it down. I hope they write it down for themselves, and then they share it with others so people can see that pain IS beauty. It's beautiful to fall to pieces, because thats when you find out what's really been under your hood your entire life. I know who I am, and I know I am breakable and also put back together able. I am no humpty dumpty. I was made to endure, and you were made to teach me I could. I hope that someone can relate to something I've written here, and I hope they can use it to inspire them to write. To say what's in their heart. To share.

7. Love.
Love love love.
Grace Grace Grace.
Love love love.

I am convinced that this recipe is what will make your life full. Having grace enough to see others with love, even when you ought not to. Having love enough to give someone grace when they don't deserve it. Falling in love with someone so much that your relationship shows grace where ever you go.

I miss you so much, little boy. I love you more than words can describe.

I am so thankful for you.

And I will always always always be so.

10.01.2012

The last page.

In some moments every fiber of my being aches to hold Gabe.
Some, I am able to move without a thought of the aches.

This is our story, and we are writing it.

I have to remind myself of that for many reasons.

When something so helpless happens, that you have no control over... When you watch the ventilator be removed from your son and suddenly remember that his nurse forgot to suction him, like you had planned... and you hear him choke on flem... and you cry out "We forgot to suction him!" and look at the nurse... expecting her to come running... but then you see the look on her face.

She's looking at you with a look you have never seen before.

The end of Gabe's story on earth was happening, and there was no reason to suction. He was suffocating, he couldn't breathe on his own, and it didn't matter how clear his airway was... he was going to die.

I felt so helpless, looking at her, pleading with my eyes for her to come and suction him- thinking that... maybe he would be okay? I don't know precisely what I was thinking.

I wish it would have been longer. I wish he would have breathed on his own for a while, but it would only draw out the final pages of his book to say that I wish it was never. I wish it was never.

Gabe's pages were filled with every feeling I have ever felt, the whole spectrum.

Love, pain, fear, hate, hope, violence, purity, passion, honesty, brutality, lies, fight... Fighting.

If I had written the story of Gabe's life, it would have ended quite differently.

Gabe and I would be outside now, playing together in the dirt, learning about grass and sign language and just smiling at each other. We would be home together, with Judah and Nick, and we wouldn't be starting over from what felt like scratch... because we would have won.

But we lost the battle we were fighting... though we won the ultimate battle- we lost the battle we wagered one year ago in Seattle.

I will tell you one thing, having a baby... Meeting them for the first time, is the most beautiful- undeserved beautiful feeling in the world. The whole world stops for a moment because something incredible has happened. A life has been born that has impacted someone so much that it completely alters the chemicals in their mind.

I suppose that's why we would die for our children. Because their lives have such a profound impact from that first moment... before that first moment, really.

I dreamt of Gabe last night. Well, it wasn't Gabe, really.

It was a strange, sci-fi like dream... Where somehow Gabe had been copied and made to live again out of clay- but it looked like Gabe, played like Gabe, sat like Gabe... but it wasn't him.

At the end of the day, I had to make a choice. To keep the baby who looked like Gabe, or to let him go.

I pushed a button that said 'nevermind', but not before I had spent the whole day trying to decide if I could love this little one like I had loved Gabe.

Strange dream, yet again (common in my world)... but I woke up and wished to hold even the fake Gabe for a moment.

The final pages of Gabe's book look like this to me.

Gabe is laying on a bed at the Devon Nicole House in Boston. Judah is sitting next to him, smiling at his baby and asking to hold him. I put them up together and I tell Nick "take some pictures of them!" while I make sure that Judah is careful.

He does so, and then I take my sweet baby in my arms and lay him on my chest.

It was the last time I would do so- but I didn't know that.

It was the last time I would feel him breathe on his own accord, but I was unaware.

It was the last day I would see his smile.

And I wish so badly I had known then, so I could have sucked those moments in more deeply.

I wish I hadn't ever set him down, at times.

Today is the last day I will post on this blog.

The four of us, our adventures have ended for now.

New adventures will arise in new ways, but the grand adventure has ended for the moment.

I'm sorry I didn't hold you a little longer, Gabe.

See you, someday, my sweetest friend.

And we can have adventures in Heaven.

9.28.2012

Goodbye you silly lies.

I've had a melody stuck in my head this morning.

"Goodbye you silly lies,
Hello to the truth."

I don't know what put it there, but I think I'm beginning to understand why it's there.

The past months have been filled with so many lies I can't begin to count them.

It's time to focus on the truths that I know.

I would have done anything to save Gabe.
My marriage is going to survive all of the things it has been through recently (and is going through now).
There are people who genuinely care for our family.
God did not turn his head the other way while Gabe died.
We are loved by our heavenly father.
Gabe's blood still pumps in my veins, even though his spirit is no longer here.
Love is certainly not lost.

Blossoms

Five months ago, I had you in my arms. Just before Judah's birthday, I had you in my arms.

And cherry blossoms were all over the city then.

I was all over the city then.

You were in your stroller, or in my wrap.

You went with me to the doctor to take out Daddy's fake tumor.

I wish I could have breathed you in deeply enough that I could still feel you, whenever I wanted to.

Boston was so beautiful, not because it was just so beautiful (which it was) but because you were there with me.

Now you are in the blossoms, everywhere. You are in the air, because every breath I breathe tastes the bitterness that your sweetness left behind when it left for now.

For now.

I am not without faith, I know that you are safe in heavens arms.

But selfishly, I wish you were here in mine. Not with any of the tubes or monitors, but just here smiling once more.

Giggling.

I loved that you were ticklish.

Gosh, the sweetest deep laugh you had.

You are in the rain, the blossoms, sometimes just in the air when it smells a little sweeter than usual. But you aren't here at all... they just remind me of you.

Just like hugging Susie reminds me of you somehow.

Miss you, sweet boy.

9.26.2012

It is easier not to talk to you, lately.

Not because I don't love you, or because I don't think you love me... But because I don't understand.

I am not mad at you. I am sure that there is a reason why the world spins this way and not that way. I am sure that someday it will make sense... Or it won't make sense but there will be an answer as to why...

As to why sometimes miracles happen, and sometimes they don't.

Sometimes you watch a flower wilt before your eyes, and sometimes you watch it bloom and thrive.

As to why a bud of a rose would wilt so quickly before it's time, when it would have grown to be the most beautiful flower of all.

It stings because I wanted to glorify you for Gabe's long years, but instead I only can say thank you for the months we had.

I wanted so badly to be the one who got to boast about my son living when he should have died for a whole, long life.

But I want to boast about his short life too...

I just miss him so.

I know you have him, I watched him leave... But last night I felt you lay him next to me, in-between Judah and I and Daddy, in the spot he should be laying. I lay there and I could almost feel him in my arms again. His mushy little body and his sweet, glowing presence.

Then I saw him looking up at me, tilting his head so far back and talking... with his big "Oooos".

His sparkly eyes see into your heart, they don't let you lie about who you are or what's inside of yourself. They saw with purity.

I will spend the rest of my life loving you, but also wondering why your miracles thwarted my tiny boy in those moments, not because I don't trust your plan or your design... but because as a mother... I don't believe my son should have died. I don't believe he would have brought harm to our home or our world, but joy and peace.

And selfishly, I want him.

But you love me inspite of myself, which is the glory of it all.

I am so flawed that I can barely speak your name... but I know the truth is that you see me in these moments and still love me despite my carnal mind's expectations of you.

I wrote the blog, thankfulness... and I hoped that by being thankful for the hospital and the hope and the bad things, and the good... that I could get my miracle. That my son would be that miracle.

I needed him, you know?

He was my baby.

Nick and I always joked about how Judah was his 'mini-me' and he loved Nick so much, that Judah was 'his baby' and that the baby I was pregnant with would be my baby. I told Nick "I just have a feeling, he will be my baby. He will love me!" and he did. He was my baby.

The day we delivered Gabe, I was so nervous. How could I let him leave the protective shell he was in and enter the world knowing how small of a chance he had at being an adult?

But I did it. I brought him into the world, and I held him, and oh my gosh... I was in love. I knew him, he knew me, we were each others friends... and we were made for each other!

I held him for fifteen seconds.

And then I stayed awake.

I had to wait until he was settled to come see him again, and I was so tired. I'd been in labor stages for weeks and weeks, and they had to force my body to deliver him by breaking my waters.... and I was so tired. Nick fell asleep, and I stayed there, blinking, awake. I wouldn't sleep until I saw him again.

It was 2:20 in the morning when I started waiting.

And 6:30 am when I finally got to go and see him.

Beautiful, breathtakingly beautiful.

Like a little angel, short hands and short legs- but perfect. There was something about him, like he was custom made for me. To fit in my arms and to hold in my heart.

Sometimes, it's not enough to have him in my heart.

I need him in my arms, you know.

My arms ache for him, my heart and my body ache to see him again.

I know I won't be able to move on without him, but I can keep pressing forward. I can keep breathing, with the hope of heaven.

9.22.2012

Sleeping Beauty

The days have been mellow, I haven't spent a lot of time in tears.. But I wish I did sometimes. Sometimes it's worse to not cry.

Today I read a post about someone going home, and my mind still goes to jealousy, the jealousy I felt every time someone went home and you didn't. But now, after that 'mild' jealousy happens- a sinking feeling is there. You aren't coming home to our house.

My days of having my three boys in a room together came and went.. and then you were sleeping beauty.

You laid in that hospital bed like it was your glass case. Not breathing on your own, not eating, not moving... Not getting better and not getting worse for five months.

If I could have kissed you and made it better... But I did kiss you.

You were so beautiful and so perfect the day you went in for surgery. Not like the last surgery where you were so sick and intubated... I was so certain we would have you back, grinning and spinning in circles.

I was so sure you would be in my arms right now.

I hate how final it feels, even though I believe you are in heaven and I will see you again...

Right now, the hope here is gone. There is no hope that I will take you home. There is no hope that you will wake up from your glass case and go on with us.

So now my husband is facing the reality of losing his Mom, and I feel like I can't handle it. How strange, that I think that I can't handle something that isn't really my burden to handle.

Life is so unfair sometimes.

I want miracles to happen, but the day we let you go, I waited for the miracle, the whole day.

And I will never stop waiting for it.

9.19.2012

Mosaics

It feels like your heart went through a meat grinder. Beating, but every beat reminding you of something sharp and real, raw and painful. But it doesn't feel like that all the time, so that's the good news. Right now, it feels like that.

Not just because of the hole left by Gabe, but because of what was ignored the past year and the things that became small potatoes.

Medically complex lifestyles are lifestyles spent where EVERYTHING becomes small potatoes. Jobs, relationships, life.

I felt that anytime I had a conversation in the past year, a real conversation... it was a luxury. Having emails from a friend, was a luxury.

So you can imagine from there the remains of other things were not so unscathed in the process.

I love antiques and victorian type fancy. I love cracked glass creating new objects (Mosaic art)....

So maybe, that's what we are doing now.

Maybe, all the pieces that have been broken- cracked, chewed up and spit out can turn into a beautiful masterpiece that I can put in a window in the house in the end.

But right now, the glass is all over the floor.

The remains must be gone through from here- picking them up might be the hard part... They are sharp, they are bitter and they are very very real.

But I am hoping that since I can't knit, I can glue them onto a window... then cement them together into something new.... beautiful.

Glass is all over the floor right now.

Now lets make something of it.

Because walking all over it in bare-feet and ignoring it would be the best way to bleed it all out- and it will bleed out if we let it.

But I want to make mosaics.

9.15.2012

Miss you.

I hope in heaven, that you are still my baby. Still small and mushy. I hope I get to scoop you up and lay you on my chest finally... I miss that so much.

I hope you look at me with sparkly eyes again.

I miss you so incredibly much.

Can't wait till forever.

9.10.2012

Busy

Needless to say, the last few weeks have been a vast spread of emotions, but the main one I have been hanging around is a mixture of contentedness with what is left at the end of this journey, and anger at nothing in general other than the hole in my stomach that will probably never go away.

However, I have been keeping myself busy. I have had three photoshoots in the past few days... and the  editing process has been keeping me more than busy... But it's a rewarding sort of busy.

Honestly, I keep trying so hard not to teeter over the edge of the balance that I have hold of between 'okay' and 'falling into depression', and it feels like I am swimming upstream... But I am holding steady.

I had a very vivid, wake you up in a cold sweat kind of a dream last night. I was arguing with my Mom while driving, and suddenly we realized that I had hit something, someone was screaming. I got out and somehow it was Judah (even though he wasn't with us)... and his arm was severed while I screamed "Call 9-1-1!" over and over. I woke up with panic, and it was so real to my mind, I couldn't shake it for a while. Judah was in our bed, so he was laying next to me at the time... but I honestly felt such a deep despair that I still couldn't shake it for a while.

So other than that, we are staying afloat.

Afloat, whatever that means.

I have been having more trouble than I imagined with social gatherings, especially church- and I'm afraid to go back. I almost thought "maybe I will just go to a new church where no one knows me or Gabe or anything about this..." But that's not the reality of why I am having a hard time.

It would be just as hard to start somewhere new where no one knew.

Then I dreamt the other day that I was screaming at strangers "My baby died! He DIED!" Wishing for a reaction that would make me finally breathe out, you know... When you tell someone something deep and dark and they have the reaction like "WOW... My life is forever changed and I totally understand where you are coming from."

What a strange dream, but I suppose it had something do do with the intense loneliness that is related to losing your child/infant/spouse, whomever you lose, I'm sure it's still there.

Anyway, I suppose my point is, I will just have to move forward with the gutwrenching heartattack feeling I get every time I see someone who knows, or who doesn't know... Or who I wish I could talk to about it, but I can't because they could never, ever understand. Or the people who do understand who I wish didn't.

The turmoil lives within itself, I suppose. There's no 'good' way to feel about all of this, I'm afraid.

But I suppose I'm glad I feel something.

Whatever it is.

So I'm still moving forward.

We are heading to the coast for a couple days, and I am looking forward to that, at least... To a time away... But then I realized today you can't truly escape it... You can make yourself busy, so busy that you forget, for a moment, the intense loss... But you can't forget.

And from what I understand, it doesn't get easier. You just learn to be busy, always. Always busy, so you don't think for a moment how intensely you miss... Oh gosh here come the tears.

9.08.2012

Re-defining our world

The past year (well, longer than that really) has revolved around two boys in our lives, Judah and Gabe.

Now, down to one boy who is pretty healthy, we are faced with redefining our entire world.

No hospital planning, no staying in random houses with strangers... No figuring out where to eat and who is at the hospital while someone else is with Judah...

It leaves things very openended, because that WAS our life for the past year.

Moving along without that ordeal is something we never thought we would miss (and we don't miss a lot of aspects)... but we miss waiting for Gabe to come home.

Anyway, so we are processing where we go from here right now.

I plan on staying with Judah, because I am not the type of Mom who can stand sending her kid to daycare while working to barely cover the costs of daycare alone... I would rather spend the time with Judah personally... So that is worked out.

Judah has been missing Gabe quite a bit and asking Gabe to come down from the sky to have milk with us...

And I am starting my photography adventures. I have a photoshoot today (building my portfolio) and I want to take a few classes if time permits.

Nick is getting his CNA degree transferred from Washington to Idaho (which will take 2 weeksish) and will be searching for a CNA job while in the process of continuing school (he took this semester off since we lost Gabe at the beginning of it and concentration seemed impossible).

We plan on getting into an apartment in a few months after Nick has a job, and then we will be working on furthering his career a couple steps at a time while I work with Judah and we decide when it's time to introduce our third McAllister to the family...

I only ever planned on having three, so it's kind of weird to have another 'second' child.

Anyway, overall, we are doing pretty badly with the grieving, but still moving along somehow.

We are done with funeral things for the most part... so that's nice.

I never knew how much you could miss someone you only knew for 7 months... but Gabe is missed sorely.

I got my tattoo for Gabe, which was cool, but it's infected. My other tattoo (hummingbird on my back) is fine, thank goodness... But it was really disappointing to have it get infected... and that will mean that it will need a lot of touch up.

Sigh.

So

Other than that, nothing really happening. Just preparing for 'settling down'.

We are basically starting over... with Judah.

And there is a very empty spot in our car... Like our little 'Life' car with the little red and blue dots. We are missing one of our dots quite a bit.

9.07.2012

Sigh

I saw Gabe nearly die so many times that it still doesn't feel real that he is gone.

Unpacking some boxes that arrived from Boston today, I found more of this things, little pants and shirts and stuffed animals... And I still feel like putting it in his drawer.. He still has a drawer.

I found the drawing I did of Gabe in the coffee shop in Boston... and I remember that day I thought we were going to lose him, but we didn't. But I needed him there, so I drew him there.

"He is the most beautiful creature I have ever seen and it's not about his face, but the life force I can see in him. It's the smile and the pure promise of everything he has to offer. Like he's saying, 'Here I am world, are you ready for so much passion and beauty and goodness and love and every other word that should be in the dictionary under the word life?' Except this boy is dead, and the unnaturalness of it makes me want to pull my hair out with Tate and Narnie and Fitz and Jude's grief all combined. It makes me want to yell at the God that I wish I didn't believe in. For hogging him all to himself. I want to say, 'You greedy God. Give him back. I needed him here."


It is a quote I found yesterday... But it felt so true. Of course, I don't think God is greedy, nor do I blame him for our loss of Gabe... But I do believe that he is the God of miracles, and I wish we could have kept our miracle just a little longer, to be quite honest.

But the miracle was what happened when we were 8 week pregnant and told that there was no hope for our little 'dot' of a baby to grow. And then at birth when they said his heart couldn't squeeze well enough to live through even one surgery.

So we were given a miracle, time and time again.

It must be selfish of me to wish so badly to have that miracle longer, when we weren't suppose to meet Gabe at all.



There is something in me that still wants to fight, fists out, for Gabe. To prove he was worth it, to prove to someone, EVERYONE how precious his life was and how much value he had. But it doesn't really matter what anyone thinks, because we know.

We know by the emptiness where his presence used to be, by the hopes that are gone, the dreams of what he would be like that we will never see until heaven.

Gabe was unlike any infant I have ever known.

Gabe was more than any odds could define. He was beautiful, the most beautiful baby I have ever seen. His eyes were so unique, so deep and so willfully drawing you in... it was almost unnatural how beautiful he was sometimes.

He was sweet, but so determined and so gentle, but so strong.

Sweetly he would play with his toys, determined he would roll up on his side and spin himself in circles while chewing on his thumbs.

He defined love for us, rawly.

Raw love. Like when you stop processing what love is SUPPOSED to look like and how it's SUPPOSED to feel.

Love is fighting.

Nick and I are having some struggles with Gabe's last moments.

I am, anyway.

I almost wish we would have waited to lose him on his own time, rather than to make the decision to not let him suffer slowly... But it felt so much like I let him...

Like it was really because I gave up on a miracle. Because we gave up the fight and the hope and the miracles.

And I know we will have to come to terms with it somehow, work through it..

But we always believed in miracles. I believed in miracles.

The what-ifs pile around me lately like stacks of paper that I'm afraid will surround me and steal the good moments we had away with the fears of what happened.

Maybe it's normal, to grieve. I know that people who leave their loved ones on life support in comas for a lifetime are too afraid that they might wake up after they give up... and maybe that's what I am going through.

I wish his body could have woken up and fought off the infection.

But even though we 'knew' he was dying.

It still feels like hell to have been the one holding him, and letting him go. Giving up.

It was giving up.

Prayers needed over here.

9.03.2012

One Thousand Gifts

1. The gallop of hearts on monitors
2. Laughter for no reason at all
3. Joy where sorrow should be.
4. Hope
5. Teary eyes of love and compassion
6. Memories that burn
7. The smell of hand sanitizer
8. The color green in contrast with his blonde hair
9. Perfect toes in a row
10. The hole in my stomach that tells me it isn't a dream
11. Paused time
12. Miracle after miracle that should never have been
13. Brothers... love.
14. Friends who send notes
15. Unexpected flowers
16. Tears that flow freely.
17. Babies breath flowers.
18. The ocean...
19. Memories I can feel on my fingertips.
20. Pain's reminder of a deep love.
21. An easy birth, a pink baby.
22. Strangers who look like friends.
23. Recognition of your baby in others.
24. Breastfeeding, for just a moment.
25. Whipped cream tastes
26. Airplane strangers who want to talk.
27. Big, deep, meaningful hugs.
28. The smell of a spouse.

9.01.2012

Memorial

We had Gabe's memorial today.

I think for the most part, it went well. I don't think I was prepared to see his casket, or how tiny it was... or feel the feelings I felt.

But I knew it would be bad when I woke up this morning with the same feelings that I had the day we knew we were letting him go.

A hole in my stomach and my heart that feels like a spinning blade are the best words I can use.

It was so nice to have people there, supporting us and praying for us and loving us... and our son.

I know that God will continue to use Gabe's life for good things, as he always has...

But it was difficult.

I read three of my blogs and was afraid I wouldn't have the courage to do so...

But what sister Pat said to me last year was in my head the whole time.

"God has not given me a spirit of timidness."

So I tried my best to stand up and share our hearts for Gabe.

It doesn't change the hole, but I do know that I did what I wanted to do...

Shared what a huge impact he had on us.

The whole time, I was touching my heart... feeling the beat. Not to feel mine...

But because that memory, it's so real, so there. Feeling his heart beat on my fingertips. I will always have that memory. Its engraved in me.

I never knew it was possible to miss someone so much.

Gabe, I hope the messenger angel is telling you all about how loved you are. How loved you will always be, by us. The people God trusted you with for a little while.

You are irreplaceable.

Life will never be the same without you.

I will never stop missing you.

This empty spot will always be here.

But so will this memory.

I still feel your heart beating on my fingertips.

I still smell your hair.

I still feel you pulling my hair out.

I hear you talking in baby language.

I watch Judah patting you while I say 'gently'.

I remember swaddling you.. bouncing you, rocking you... Loving you.

I will never forget.

Thank you for picking us. Whether you did or God did, thank you.

I never deserved you.

I never will deserve you.

How great, beautiful, perfect, lovely you were.

How strong, smart, gentle, giant, wonderful, brilliant you were.

It still feels like a dream. I still feel like I will wake up tomorrow and you will be finally coming home from the hospital. I don't know if it will ever feel real.

I miss you... So so so much.

I love you forever.

8.31.2012

I'm sorry

To the person...

I'm sorry that we don't have any huge reaction at this point to send you off with other than, we love you. I think I know who you are, and that's okay... Because we do love you.

No matter what you say, we will still love you.

Nothing can change that. No matter how hurtful your words are, we know the truth of the matter, and none of your words have effected that.

I hope you find the peace you are looking for, and if it means you need to continue badgering us, feel free. We know who we are, what we believe and who we serve.

What you are doing isn't coming from logic, but hurt.

And I'm sorry you are hurting.

8.29.2012

Happy Birthday...

I know I didn't post yesterday.

We were out celebrating the 'almost' one year of life we had with you.

I am so thankful for you, Gabriel.

I wish you were here to celebrate with us.

I wish that this surreal feeling would mean that it really wasn't real, but it is, isn't it.

I know you are in a better place, but we feel very empty without you.

You were, you are, a very important piece of our family.

You have held us together, Gabe.

I think you were like the glue, the icing on the cake. We still feel the benefits from having you in our world, but they are so much less sweet.

My tears are hiding out somewhere... But the empty spot is still here.

I was sick to my stomach yesterday, all day. Between butterflies and emptiness (and forgetting to eat)... I wonder how on earth I expect to make it through Saturday.

But I know that your life was a life built for the glory of God.

You are my Esther, Gabe.

You did things beyond your capabilities with the help of God, and gave us our memories of you, memories that we will always treasure until we meet you again.

I wonder if you will be grown like Dusty.

But either way, I hope there are hugs in heaven, because I want to hug you once more.

I am so sorry I wasn't stronger when we said goodbye. I am sorry if I scared you, but I was afraid to lose you.

I wasn't afraid of where you are now, but I was so afraid to say goodbye too soon. To give up too soon.

That day, was awful.

But today... I just miss your puzzle piece in our world.

If only we could have brought you home just once more, to see all these people who love you.

I hope you see them somehow. I hope Jesus is telling you all about the destiny that you fulfilled in our lives.

You fought hard, well. Better than any soldier I have ever met.

I am so, so proud of you.

And it was totally worth it.

Love forever,

Mommy

8.25.2012

Dear Gabriel,

The day we lost you, our nurse made up your bed and scooted you to the side so that I could climb in next to you. I did, and it was perfect, Gabe. I sang to you, and every time I did you fell into a deep, peaceful sleep. If I took my hand from yours, you woke up, searching for my hand.

And you looked at me with 'those' eyes. My sweet prince, I don't know if you realize how much you were loved...

The day you were born, our hospital room was filled with over 15 doctors and nurses. It was so calm though, so loving. My doctors, all three of them, were so kind, gentle... and you were born into a room of peace, love, and hope.

When we lost you, you were in a room quite similar. It was eerie, almost, how similar it felt to when you came into this world. A room of bittersweet harmony. Love so strong... that if it could have saved you, it would have. If love could have saved you on this earth, I have no doubt you would be here today.

I don't think a dry eye was in that room. No one was ready, least of all me.

But I know today you are somewhere else, and I don't feel you around. I think you left quickly, and Daddy and I wonder if the angel Gabriel came to pick you up and carry you, since you didn't know the way yet.

I wish it wasn't so quickly.

But I know someday I will feel your presence again.

Thank you, Gabe... For kicking butt. You fought so hard, for so long, with so much strength. You lived when all other babies would have died. You went through things that people said you would never survive, and you did. You were more than a conqueror, and you left us with your fighting spirit in us.

I was the most afraid I have ever been in my entire life on Thursday. I was so afraid to let go too soon, to give up when you could get better, but I know your body was no longer healing... The fight was over.

I am so glad you fought, Gabe.

I am so proud of you, more proud than I have been of anything in my entire life.

I believe that God put you here for a very real purpose, but that death and destruction tried to thwart that purpose. I believe that the enemy is trying to use what happened for evil.

He was laughing while we sobbed, but he didn't realize that we were not defeated. That we haven't lost, Gabe. We haven't lost you. We won.

We won because we held you. We won because you made us understand things we never thought we could comprehend.

We won because you changed us, every second of your life from the inside out.

You opened our eyes, you taught us, you showed us what we were so blind to. The innocence that God had intended for all of us... You showed us that.

We love you, forever, and I cannot wait to snuggle you in heaven.

Thank you for our last snuggles. I will never, ever forget them.

8.24.2012

The Perfect Gentleman

Gabe will always be my version of a perfect gentleman.

He was quiet and listened to everything that you said, quite intently.

He was a warrior, he fought so hard....

But he was a gentle spirit, so sweet and so untainted by other people's ideals.

I was talking to Nick tonight about our 'someday' babies... and I said it felt a little odd...

But if we don't have a baby with Downs Syndrome, I'm afraid I will be disappointed.

So someday, just like we promised Gabe, we will adopt a baby with an extra chromosome.

We always told him we would, so he could have someone who looked had those cute little features... Someone who would understand him perfectly, even when we couldn't.


Yesterday, before we lost him... we talked about the time he spun off of his couch into a laundry basket.

Thank goodness the laundry basket was there, we had thought.

To catch our baby when we weren't there.

I know he was caught yesterday.

He might have been scared, because I know we were scared. Scared to let go, scared to hurt so much.

But I know his fears were replaced quickly... by something so amazing.

Love surrounded him in that room, but nothing as great as the love that surrounds him now.



We miss him, but he knows that he is loved.



We are the ones grieving tonight, but not Gabe.

Oh Gabe. I miss you so.

Oh Gabe

I miss you.

Empty Feeling

All day, I prayed for a miracle. That somehow Gabe's white blood cell count would go down... But ever few hours, I made them re-check his bloodwork, waiting for our miracle.

I watched his count rise from 12-14-19-22....

But around 6pm I made Nick call Dr Del Nido, the man who has advocated for Gabe this entire time. I made him call to ask one more time if there was any chance at all that Gabe could recover.

'Surgeons never give up on their patients, ever.' A nurse told us. But Dr Del Nido told us that it was the end. That if we let his infection brew farther, it would be the longest, hardest road we put Gabe through, his kidneys had stopped functioning well.... his body was swelling from retaining fluid... and the infection was cutting off bloodflow to all of his important organs.

In the last moments with him I still hoped that he would be able to breathe on his own... to come off of everything. I was hoping for our miracle even as we said goodbye. But I know we had our miracle in our arms.

Nick's Dad held him around 7pm. Then, Nick held him at 7:25pm. Then I asked his sweet nurse, Dane, who loves him so much if she wanted to hold her 'nugget' as she always called him. I would be his last hold. I brought him into the world, and I wanted to be the one who was holding him. Dane cried over him, as we all did.... and then she looked at me.

"Are you ready?"' She said.

I began sobbing and she did too. "No." I said, through tears...

I couldn't do it, I'd said it all day. I couldn't say goodbye.. I couldn't give up... I couldn't watch his life end. But I knew that it was going to end whether I held him now or not.

I held him in my arms and cried. A photographer showed up from Now I Lay Me Down to Sleep and caught photos of him... and then photographed what happened next.

I didn't understand how Gabe would stop breathing. I couldn't fathom it. I have never seen anyone die before. I asked them what they would do... and they made it sound very simple. They would remove the  breathing tube, and turn off the medications that were helping his blood pressure... and turn off the machine telling us his heartrate and breathing rate.

They gave him extra pain medication, but I made them not give them too much. I wanted to see him breathe once more.

They removed his breathing tube, and he cried out loud from the tape being removed... Which caused me to break into tears again, looking at his sweet sad face.

They removed the breathing tube and turned off his medications.

He breathed for a while, but it didn't seem real. It seemed so slow, but so fast.

And we watched him breathe for the next few moments, faster and faster.

Oh Gabe.

It only took a couple of minutes before he was gone.

But before he took his last breaths, I knew he was already gone. I felt his presence leave the room, and I knew our Gabe was forever gone. An empty feeling sunk deeply into my heart, and I knew what that meant.

We sobbed, so much. The photographer caught all of it, and I'm not sure if I will ever want to see it.

Afterwards, Nick told him he thought he probably got a lot of really horrible pictures of us crying...

But he said.. "They weren't horrible. It looked like a lot of love." and he began to cry.

Dane and I dressed Gabe in his little tuxedo for the last time. We put on his shoes and the photographer took some pictures. I had a hard time being in them, because I knew Gabe was not there anymore... and he didn't look anything like the boy in my heart.

The boy who is missing from there now.

I know he is a perfect place of love...

But that doesn't change the empty feeling we have now.

His birthday is on Tuesday, you know.

Oh Gabe.

I love you so, so so much.

8.19.2012

Hope for Baby Bennett: Healing a Hurting Marriage: Part 1. The Backstory

Hope for Baby Bennett: Healing a Hurting Marriage: Part 1. The Backstory: Having a medically fragile child, particularly with a diagnosis like Hypoplastic Left Heart Syndrome, involving multiple open heart sur...



Please read this post. Though we haven't reached the 'post hospital' part, it does take a toll.

Nick and I were still newlyweds when we started the parent journey... and now, we haven't had a chance to catch our breath as a family away from hospital land in over a year. It does take a toll.... Something I will probably blog about when it isn't so close to home...

This family is very important to me.

She is a beautiful person, inside and out and her family serves the Lord through all of this. She is also a member of Sisters by Heart, the group who sent us a care package when Gabe was diagnosed.

Please take a look and give her a comment with some kudos for sharing such a personal experience that will help so many... like our family.

Asleep at the wheel.

I will be absent for a little while from the blogging side of things. If you want to keep updated on Gabe, like his facebook page and check there for updates.

I am kind of asleep at the wheel right now and I'm just going to enjoy the small things since the big ones are a mite overwhelming as of present.

Thank you for being so kind with your words, whoever reads these, and the encouragement you have all shown is also greatly appreciated.

8.16.2012

A different kind of plan.

I have spent so much of the past year just waiting for our family's life to start together. Waiting for us all to be whole, complete.

Then, I spent even more time recently wondering when, if ever, it will happen that we will all be together under the same roof, away from the hospital.

"This couldn't be God's plan for me, could it?" I thought today.

Could God let my son go through so much, knowing how difficult it has been... and truly be giving me His best? See, God's best has always been 'better' than what I have, in my mind.

I always think that God's best is perfect health, perfect finances, perfect love.

Perhaps, what I've been missing all along, is that God's best is where I am.

Yesterday on my long plane ride, I began reading a book a friend of mine had sent me from her Mom. One Thousand Gifts.

I have had it for quite a while, and thought about it, but I wasn't ready.

I think it was the right time, yesterday, to begin this book.

One Thousand Gifts starts off with a tear-jerking story... told by a woman who had seen her sister die in front of her and watched her father's faith collapse in the wreckage, and very much lost her own faith in the beauty of life as well.

Then, it moves on to another story that tore a hole in my stomach.

A family, who had lost their first son to a disease- losing their second son to the same at just 6 months old... watching the breath slip from him.

It was almost too much to handle, well it was... I cried, of course, and for a moment shut the book. The father had faith, even in the moments of losing his second innocent son, that God had a plan.

I like to think that I have felt that much of the time, that there was a plan. But I have never thought that THIS, what we are going through, was the plan. The plan, I had always thought, was what was to come. The joy of a healed baby. The hope of a full, complete family. A family, that without Gabe, we will never feel.

The story continues, and the woman writing makes a profound realization that strikes me.

Before every miracle in the bible, there was thanksgiving... There was thankfulness for what was already had.

I can say that I have been thankful for the months we spent out of the hospital with Gabe. But I cannot say that I have been thankful for any moment I have spent over his hospital bed, watching him struggle with the fight to just live. Not even to be happy, but to just live.

In fact, the very thought of what he has had to endure makes me almost angry, at how truly unfair it is. At how such a beautiful baby cannot be a baby.

And today, in the heart-mom world, another baby was lost. I can't help it but cry every single time. It is too close to me still, and I hope one day I can have faith that it will not be us, but right now I still wonder.

Was that the plan God had for that baby? I don't think God has anything to do with death on this level. I think the only thing that caused death, congenital defects of any kind, cancer, pain, loss, exhaustion... Was evil that came into the world in the moment we fell from God's perfect plan.

The book also touches on that, but it's true reflection is the blessings that we do not count in our moments of life.

The blessings that I know of, but I have not thanked God for.

God's true act of love for us, every single blessing that we would not have without his grace.

If God's plan for us is for us to love and be thankful for where we are at, then who are we to call into question what the future should hold... When we cannot be thankful for what we have at this very moment.

So, as in the book, I have started my list. 1,000 blessings. But I don't intend to stop there. I intend, very much, to thank God for the things that I may acknowledge that are good in my life, but I don't thank Him for on a regular basis.

Because, the truth is this. I want my miracle. So I am going to be thankful for where I am at.

Miracles come after thankfulness.

God, give me a thankful heart.

Let me not be a complainer.
Take my heart and refine it that my eyes would be opened to the tremendous blessings you have given our family in the past years.
Let my spirit be a grateful one, that I can finally enter into your courts with a deep thanksgiving in my whole being.

Let me have peace with the world around me, as it is... So that You can be free to mold it to make it what you want it to be.

I'm ready for the plan, if this is it, let my heart be glad.

Let my heart be glad in the moments when others would be bitter.
Let my heart be softened in the times when others would harden.
Let my spirit exalt you in such a way that people would see Your love in my life, even though they may have a tendency to feel pain for our situation, don't let that be what we reflect.

Stir me up and make me new.

8.12.2012

Courage

I bought two bracelets from the hospital gift shop today.

One said 'Hope'. The other said 'Courage'.

Hope was for me, because I have needed to believe that hope exists in the most fractured of moments lately... and Courage was for Gabe. Or was it for me?

I put courage on one wrist and hope on another and wore them around. I have never pictured myself as someone with a lot of courage. Though I like to think I have goodness in me, I also don't picture myself as a very hopeful person at times. I believe in goodness, I think. Not hope, just goodness.

I believe that the sun will shine tomorrow, and that spring will come after winter feels too long.

But I often find myself very much afraid to hope that tomorrow's flaws will be different from today's. Sometimes I feel like me hoping is selfish, for those who hoped and saw their hopes put out like a candle between your fingers. For those who have felt the singe of putting all their hope into something, and yet, to no avail.

It takes something to hope that I also lack. It takes courage to hope.

Courage is rightly esteemed the first of human qualities... because it is the quality which guarantees all others"

Winston Churchill

I can say, honestly, without a hint of exaggerating, that I feel without courage much of the time. Small and meek. I have found that courage doesn't live within me naturally. It comes only from God, who has grace enough to bestow courage upon me in my weakest moments.

I wrapped the bracelet that said courage around Gabe's wrist, but I know that Gabe doesn't need any more courage than he already has.

He has faced so much in his little year long life on this planet.

But I have faced only the task of watching and hoping and praying for him. How much courage does that take? More than I have.

Today, I saw Gabe doing 'Gabe' things once more. I saw him looking at me, at Daddy, at his nurse, Dane... and I felt him grasp my hand with his tiny little fingers again. I hadn't hoped for this as much as I had dreaded the possibility that it would not happen again.

For the past week, I have been praying out loud for everyone I have said I would pray for. That is a huge deal for me, because praying out loud is something I haven't done in months... And now our Gabe is showing himself to not be a vegetable at all, but still his sweet self.

I don't think it's a coincidence. I think that by praying for others, God has given our Gabe grace.

Courage- such a strange thing that courage leads to so many great things. The courage to pray outloud. The courage to hope.

Thank you, God, for giving us courage when we needed it most, and keeping us quiet when we needed to be quiet.

8.10.2012

"I chose to love you."

Early in my marriage, I had my first fight with my husband.

We were still in the 'blissfully happy makes people want to puke' stage of our marriage (which I hope to be at for the rest of our lives, if possible)- and I hadn't come down from the cloud nine of finding my soul mate and how everything felt so incredibly magical.

Actually, I think I only recently came down from that, but luckily I still am very much in love with him, just less dizzy about it :).

The first fight I remember clearly, was about love. I believe in love, in breathtaking, romantic, head over heels, throw away everything you own and backpack to Guadalajara kind of love.

Our joke back then, after we had lost both of our jobs 2 weeks after being married, then became pregnant, was that we were actually "Living on a Prayer." (Oh hindsight is 20/20, isn't it)

Nick and I were talking about love, though the entire conversation is a bit of a blur now, I recall him saying, quite clearly, that he believed love was a choice, and not a feeling."

I was quite up in arms at this point. "So you weren't really in love with me, because you could CHOOSE to love whoever you wanted?" I said, probably loudly, because I am a feisty gung-ho kind of a person.

"No, I fell in love with you, but I chose to love you too. I choose to love you even when the feeling isn't there."

Being a woman I took this as the feeling was indeed not there for him. But now, 3 years down the road, I can look back and see what he meant... and with a little less emotional fragility... Say that love is, indeed, a choice.

Poor Nick, that day I probably slumped into the bed with my angry face on.. and I recall him admitting that love wasn't only a choice (he is such a good husband ;)).

But at the same time, love is very much a choice.

If your relationship was as much as a bonfire in the start, like Nick and mine seemed to be, you don't need that choice, because it seems like less of a choice and more of a 'I can't live without you' feeling. That feeling hasn't gone away, I still feel like I can't live without my spouse...

But I also know that this is only the beginning. There has been moments in the past year where we wished the other person would fly to the other side of the country (and I ended up doing so, but put it mainly on the fact that our toddler needed something more normal... when indeed, it was all of us).

We have betrayed each others feelings, and lied to each other, and been so honest it was a little too much honesty at times... But we have seen the moments where we finally had to admit that we were choosing to love each other, even when the feeling felt like it had been slung into the mud and trampled on by wild horses...

And today, I woke up before him... We are sharing a little dinky room with a cot and another cot sized bed that we try to sleep on together when we are feeling especially needy... And I woke up on my own 'cot' very upset because I wanted a bed that was normal sized for once... so I could not feel so far away.

But there he was, my prince charming, sleeping away, and I woke him up with quiet words, just to see his blue eyes open. He opened them and looked at me, and that sweet half smile filled his sleepy eyes with that day-dreamy look that the boy who fell in love with me has given me over and over again since the day we met.

It's not hard to choose to love Nicholas, because the feelings are always there, even when the overcast is strong.

He cares about me more than anyone else in the world, he loves me enough to say that love isn't really a choice, because he wants me to know that he loves me passionately too.

But in the end, if it all falls apart... I know that we both know that we made a choice.

We choose love. :)

7.31.2012

Gabe, I love you.

Dear Gabe,

I'm not sure what is going to happen. Every day, I wonder if you will recover more today or you will wind up with another complication... a fever, which you seem to get for unknown reasons at strange times... or worse.
I went into this with more faith that it would be a quick(er) process. I thought, six weeks... eight weeks tops... and then we will get a 6 month vacation from the hospital (for heart surgery, at least). I never expected three surgeries later, to be sobbing because I want you to look at me... Just to look at me.

I don't know if you are ever going to know how much you are loved. I don't know if you are going to be able to express love back to us, or if you will not be able to communicate it.. and that's okay. It's scary, it's hard- it feels unreal... But it's okay.

Gabe, I miss you more than I have ever missed anyone before in my life- and I don't know you that well yet. Maybe that's it. Maybe it's because I want so badly to get to know you more. To get to see you spin in circles and smile at Papa while you are swinging... Or to see you giggling in your sleep in Susie's arms.

I would go back to that moment... just to see you so peaceful, so joyful.

When we went into this, we were so scared that we wouldn't know the right things to do for you... Or how to fight for you... Or how to stop when it was time.

But we were so worried about things that we can't control. God controls so much of your world, Gabe. Doctors can help, nurses can love you and care for you, but in the end, only God has your world in his hands.

But what we can do, what we have always done... is love you. We have always loved you- and that's the best we can offer.

That's enough, isn't it?

Love is enough.

At the end of the day, if we lose this fight, if we win this fight, without love, it would mean nothing.

I love you so much, it's incredible.

I wish my memories were clearer, but some of them are finally clear to me again.

Gabe, I don't know if I will get to take you to kindergarten (although I pray and hope I do)... and I don't know if I will be able to sign with you... or just to take care of you.

But I know we spent three months with no hospital together. And you looked at me, and you looked at Shannon, Hannah, Cassie, Ashleigh, Papa, Mugga, Grandma, Grandpa, Aunt Debbie, Aunt Dorrine, Ann, Daddy, Judah, Mommy... and I know you touched all of our hearts.

You are the best listener I have ever met.

The sweetest friend I have ever held.

Stronger than I ever thought you could be.

Greatly Blessed.
Deeply Loved.
Highly Favored.

God made you for a purpose.

I am so lucky he made you for me. :)

7.27.2012

From the hurricane perspective... I will take whiny.

In the off time of the hospital, and of Judah, I have had the luxury from time to time of emailing friends and even visiting some while I was in Boise (thanks to the wonderful helpful parents I have). I have had the joy of visiting with people (3 friends!) and of going to the church I grew up in and was married in... and I have gotten to finally pursue mildly normal relationships.

But they all seem so stunted.

I'm not sure if it's the heartworld that we are in, or just the drama that surrounds our lives (that I would love to stop being a part of too)- but some relationships grow easier than others.... and typically those relationships are with people who have had some kind of trauma in their world too. Whether the trauma is emotional, physical, spiritual (or all three)... We can talk. And talk, and talk.

I want the luxury of being normal- having normal friends with normal problems... But I can't relate at this point.

When someone complains about their kid's whining... I try really hard to put myself in their shoes, but I can't help but roll my inside eyes and tell Nicholas... "I wish Gabe was whiny."

Don't get me wrong, I have heard my fair share of whining- and sighed a big sigh of relief when it turns to laughter... But my world isn't normal and hasn't been for a year and a half, at the very minimum.

I'm still stuck in hurricane Katrina over here, and hearing about someone's funnel cloud that almost touched the ground in their backyard- though is a legitimate worry- doesn't make me as sympathetic to their plight as I wish I could be.

I wish my biggest concern was whether Gabe was formula fed or not. I wish I was wondering if he would start walking soon or next year some-time.

I wish his first birthday was going to be at home, out of the hospital.

So if I seem distant, if I seem mildly disconnected, it's because I am.

There is simply no way of being in the middle of a hurricane to bend down to the ground and really appreciate the small quams of a normal day.. Because a normal day sounds like heaven.

I want colic. I want whiny. I want smiles that come from ten minutes of acting ridiculous (or longer). I want spit up and to be able to change a diaper without ten billion cords getting in the way.

I want a cordless baby- a baby who isn't on morphine, ativan, methadone, epi, heparin, and many other medications....

So if you see me walking by glancing at your baby's first birthday pictures with barely an acknowledgement, it's not because I am not thrilled for you, because I am so thrilled for you. I wouldn't wish anyone to be feeling sorry for me or to be going through what we have been going through... But it stings a little sometimes- to be so far away from real.

Someday we will get there, in time there will be a way. But for now I am going to be doing my best to hold my ear to the ground in the least painful ways I can.

Sometimes that means backing away from the people I care about, just for a time, so I can try to breathe out long enough to come back with a clear head.

I do love everyone, but yes, I am not ready for normal people relationships. Hopefully someday- when the clouds return to earth in an array of dust, I can brush off and start over with a handshake.

Please forgive me in the meantime.
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