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.

7.23.2012

Well this sucks.

I think we've said that statement a few times in the past year, but about a hundred or more times in the past weekend.

This sucks pretty much sums up the emotions and feelings and everything that the past weekend has brought us. Sometimes I paint an image for you of where we were, the emotions that we felt, but it's hard to relive this past weekend without a huge amount of dizziness and world spinning type feelings.

When I didn't know by Thursday the results of the MRI's (heart and head) for Gabe, I was becoming a little interested in what was taking so long, since they had told us that it would be the next day, and it had been two days at that point.

The Neurology team wanted to schedule a meeting for Friday afternoon at 2pm, and something about that made me wonder aloud to Nick... "Why didn't they just tell us. Don't they usually just tell us his results? Why a meeting, is there something wrong?" And Nick told me he didn't have any feelings about it. I brushed off my fears, and we enjoyed Thursday together, getting mistaken for newlyweds (though I explained a month and a half apart can really rejuvenate a relationship, haha)...

Then the next day came around, I held Gabe for a while and we waited for Neurology (and we thought cardiology too, but they didn't have the availability). Around 2pm, one of the doctors watching over Gabe in cardiology came in to talk to us. She was talking to us about his mitral valve news, that it was too small after all of this, and needed to be replaced on Tuesday (too soon!, I had thought) About his bleeding and their concerns that one of his lungs had been punctured in the cath lab causing some of his issues. Then, in her last sentence, my whole world changed. "And with the extensive damage to his brain." I'm not sure where that sentence was headed, but I'm sure the blood drained from my face at that moment.

"Wait, what?" Either Nick or I asked, though I'm not sure which one of us now.

"How much do you know?" She asked us...

"Nothing. We don't know anything." Nick said.

Then, as she explained what she was talking about, I felt the sudden feeling that I hadn't felt before, that I would surely pass out at any moment. The room was spinning around my face, my adrenaline was rushing, my heart pounding, and her sentences made no sense to me. I was practically certain my body was about to give in and leave me in a pile on the floor.

I stared at her, not at Gabe, and I was both angry that this was the way we found out, and relieved that we were slightly prepared for the meeting. I didn't cry, and I resolved very much at that moment not to cry.

Then, the neurologists came in at 3pm.

They told us that on his scan he had suffered severe cerebral atrophy, globally- and they didn't know entirely what this meant for Gabe. Some babies, they said, still remain mildly unchanged.... and the ones they knew of (which were very few) typically didn't do 'a lot' for themselves. Including walk, talk, communicate...

I thought of the signs Judah and I have been learning for Gabe. We watch signing time every night before bed.. Judah signs a lot of things... But the world around us still failed to stop spinning for those moments.

The doctor chimed in after the neurologists gave their small and limited information. "This doesn't change who Gabe was 2 days ago." I choked a little as I said. "I haven't seen him awake since he was 7 months old. I don't really know who he was 2 days ago." and they all looked at me with a very sympathetic look... and I began to sob. Between sobs I apologized for sobbing, they apologized for the news, I told them not to apologize, I told them they had the worst job on the planet and I felt really bad for them... and then I asked them "What are we supposed to do with this information?"

"That's a tough question. Some parents choose to ignore it, based on the variable that it holds, that it could mean nothing for your family, or it could change the way you proceed." Quality of life, compassionate care... were mentioned for the second time in his life.

I sobbed some more. "I never thought we would be here again." I said. Then I described for the doctor his entrance to the world and the moments we were given a 1 percent chance at him surviving... Nevertheless surviving to be here- once again... staring at an option that didn't seem like much of an option.

Nick's parents had surprised us with a hotel room that night. We went to the hotel room and I cried. And I asked for hope on facebook until I realized that I had posted in a group that was visible to everyone. And then the cat fell out of the bag.

"I would take Downs Syndrome any day. It's nothing." I recall saying at one point. Which I do believe. And then I said other things... like "I wish I had one more day with him before all of Boston happened. One more day with the Gabe we brought into this."

So many questions arose in our minds.

Mostly fears.

And then the beautiful part happened for me.

God put me up high enough to see from a distance the fight we have been in for the past year. And it was beautiful.

"We have gotten to actually fight for something, Nicholas. How many people get to pour their whole heart into something and fight for it? And we had three months of complete time with Gabe, with Judah... our family. It was worth it, we always said it was worth it, for one day, for one week, for one month. We always said it was worth the fight for even one day."

But nothing was clear to us. To stop treatments now, what would that even mean for Gabe? To stop repairing his heart?

Today, walking into our meeting with Dr. Del Nido, we didn't know what we were going to say, or do, but we had been praying... Praying that God would direct us one way or the other, because we could not make the choice to let our son suffer in either direction.

Dr. Del Nido made it clear to us. He said that the MRI was such a variable thing. That it could mean nothing, that he's seen kids with worse scans walking around talking... And that he's seen kids with less on their MRI's that were wheelchair bound. He said to stop now, to just stop surgeries, would be a slow and painful thing for Gabe, just waiting for the next thing to 'go wrong', whether it be infection or a sudden turn for the worse, he considered it not an option.

We asked him what he would do if Gabe was his son, and he said with certainty that he would continue forward, and I believe him very much.

We praised God for those answers, which confirmed our hopes and left us with the big risk and big reward scenario.

No matter what the future holds, my hope is in God for whatever he provides. Whether Gabe is here for a day, a month, a year. We will do our best to give him the best of ourselves. Just like we always have. And we will think of our whole family.

Thank you for your love, support and prayers as the new chapter has dawned on us.



7.13.2012

A Life Worth Saving: A Quality of Life Analysis


As a Mom, I clearly am biased when it comes to the value of my child's life. As an observer of life, I have had a lot of respect for it for as long as I can remember. Including the lives of squirrels and kittens, which mean very little to me in the scheme of humanity, of tiny people.

We are from a generation, well I am, of people who were raised in schools with special education classes (what they were referred to as back then, anyway). I was like any other child. It confused me at first why the kid in our class was not like everyone else, but for some reason (good raising, a good heart, I hope)- I saw them as people and not as 'special needs' people. In fact, as I have mentioned on here before, almost all of my friends in my imagination were crippled in some way. There was something about being imperfect on the outside that made all my imaginary friends have very sweet and kind dispositions, and all of them were quite lovely to play with. But it went beyond that, thankfully. I had a heart to befriend those who were not like me, and I almost liked unusual people better than I liked the 'usual' kind. Whether they were disabled, or just plain weird, differences not only made people beautiful to me, but wonderful, intriguing.

What can you learn from a 'normal' person? How to fit the status quo? How to behave in public? Certainly, these things make you typical- but they do not make you better. They do not improve society.

Differences improve society.

Have you ever had to love someone who couldn't talk back? Mothers do this for at least a year or two of their child's lives, and the truth is that it is the most challenging and loving thing you can do. To care for someone, to watch for their needs that they are unable to express with language. To passionately pursue their well being- above your own. A Mother's job is both rewarding and exhausting... It challenges you to be someone that is very hard to be. Someone who looks through the eyes of someone else- who puts someone else's well being above your own. As a Mother, you do a job for a short time that some have the responsibility of doing their whole life.

Not to say that the majority of disabled children and spouses and family members are unable to communicate at all, because many of them are able to express themselves rather clearly, but there are points in their lives where you have to put their well being in front of your own. Because yes, they need help- they are people who need help.

I found myself faced with a few questions recently that made me very uncomfortable.

Many people have suggested to us- or to others who have mentioned it to us- that Gabe's quality of life may not be worth what he is going through. I myself have to ask that question every day. My husband and I have talked about it, but the conversation always comes back to this.

How would we know his quality of life without giving him the chance to fight for it?

Gabe won't remember any of this, due to sedation and pain medications and his age, but we do have to recognize that quality of life is a question, and we have to, as parents, do what we believe is the very best thing for our child.

The question we were faced with recently was not about just Downs Syndrome, because there is no question in my entire mind whether or not Downs Syndrome babies have quality of life, because they do (and if you don't believe me go ahead and send me a message and we can talk about it), but of something quite different.

A question we have wondered and prayed to not be an issue many times was raised. Did Gabriel have a stroke or brain bleed that impaired him?

A nurse asked the question we were always tiptoeing away from, since she had noticed that Gabe had not been crying or reacting in his 'typical' ways.

When Nick called me to talk about this, a lump arose in my throat, in my chest, and in my stomach. A boulder. My son, who will face other challenges do to his hospital stay and his Downs Syndrome diagnosis, might be worse off yet? I couldn't help but let the tears well up in my eyes, while on Skype with my husband.

I looked at him and asked "What would we do?" And I already knew the answer. The fears were what made me ask that question. The fears of the possibility of him being so disabled that I wouldn't be able to have the third baby as we had been dreaming of.

"I don't know." He said.

For a moment, the fear of losing the little personality we had gotten to know before his surgery terrified me. "What if he's not himself anymore?" I asked. More tears welled up as I contemplated 'losing' the Gabe I had known before, to be replaced by a less abled version of himself. What would he be like? Would he be able to do anything?

"I mean, clearly we wouldn't give up on him, his heart is practically repaired anyway... and we love him." I said, trying to sound less pessimistic than I had previously. My mind was running in circles between the fears of what would happen to 'my' vision of our lives, and the hope that he would be okay.

The truth is, Gabe is likely fine, he still has mobility of all of his limbs and he is still weaning off of his medication. He started crying again, which was the sign we were waiting for that his brain was working well.. (He will have an MRI during his Cath on Monday to determine anything else).

But I was standing, very helplessly, questioning our entire world over the possibility of going through all of this only to lose the 'essence' of the child we had grown to love.

The truth is, many people have stood here, in my shoes (and worse) and fought for the possibility that their child would be okay, and I had questioned our entire world over the fears of OUR future. Not entirely about Gabe, but a lot about myself. You see, babies are rockstars. Their brains are still forming pathways, and with a stroke that took out half of their brain, they could still function very normally, because their brains heal in ways that ours cannot. They have so much hope, but my focus wasn't on the hope at that moment.

Define for me, Quality of Life.

Is a 'quality life' one that makes a difference in society? One that has a degree in college? One that saves a life? Is a quality life one that is loved? One that is treated gently? One that treats others well? Is a quality life one that effects the world?

This blog that I am about to share with you is of a dear friend of mine who has a daughter named Kayla. When Kayla was born, she was born with 'no chance', due to a stroke which effected half of her brain. This story will bring you to tears, inspire you, and hopefully enlighten you.

Kayla is a very normal girl- she is a person.

She has a very high quality of life.

And the truth is...

I define Quality of Life this way.

My son lived through odds that no one should be able to survive.

90 percent abortion rate of DS babies.
70 percent self abortion rate of DS embryos.
1 in 1,000,000 chance of his heart defects.
50 percent chance of miscarriage do to a hemmorage.
(Later raised to 80 percent)
He is a 1 in a million baby.

His life holds quality because of the following reasons:

1. He is loved.
2. God gave him to me.
3. His heart beats.
4. He is a person.
5. He is someone's child.
6. He is someone's brother.
7. He is someone's inspiration.
8. He is someone's hope.
9. He is someone's angel.
10. He changes the world by being alive.

Please take a look at this blog.

It will inspire you.

http://projectmommy.wordpress.com/dear-kayla/

Kayla's Story





..

To the pregnant woman who just found out her baby has a very difficult diagnosis,

At first, it stares at you- unrealistically shaking your whole world. How could it be true, there must be some mistake? Not MY baby... Not this baby kicking and doing flips right now...

How could anything be wrong?

Take a breath. Breathe. Let the adrenaline happen, let the tears happen, let the fears out. Cry, scream, hold onto your closest friend- sob- drink lots of water to replace that.. and continue to eat healthy. Continue to hold onto hope- because hope does exist.

Now, look up your diagnosis. Find out the best hospital for your baby to be at- join a support group on babycenter- and ask questions. Talk. Cry some more. Prepare yourself for a journey that will be the scariest, most fulfilling, most trying, most loving and most exhausting experience you can go through.

And know this, you are not alone.

Nevermind the people who have been where you are before, because your closest friends will be the parents that you meet at the hospital- the parents who love their children more than life itself- and the parents who talk to you like you are a person, who can relate to you in a way that the general population has a hard time computing. Nevermind your family, who may not know what to say, or may say all the wrong things. The letters you expect to get, may not show up. The support you were expecting may be a lot different than you thought it would be, but the beautiful thing is who will be there when no one else is.

You are going to hurt, and sometimes you are going to see the end of the tunnel only to watch it slip away (over and over again, for most of us). And then you will make friends, and they will lose their little ones. And you will hurt for them in a way so personal, it's going to be almost remarkable how it feels.

Then, you will get up, and you will wonder if you have the strength to make it through one more surgery, one more hospital day, one more cath lab visit, one more IV poke, even. You are going to wonder how you made it through all of that without crumbling (and sometimes you may crumble)..

But your life is going to be changed. Not for the worse. For the better.

You will know the beauty in the value of such a small life. You will see truth in it's rawest, most personal form. You will find God in the middle of the night when hope has left you without a slight trace. And then you will stand up- and keep fighting.

You will form connections to every 'special' child you see, and you find value in the life of every child.

Sometimes, a pang of jealousy will haunt you- at the life you envisioned for your 10 month old. While other babies are learning to walk, your baby may just learning to be a baby again. When you see other babies leave the hospital, you will feel a joy and elation for them, but a pang once again for your time to leave those doors.

And then you WILL leave those doors. You may leave those doors without your little one, because they are still too sick to leave. You may leave those doors without your little one, because they will never leave those doors with you. But it will be the most lifechanging experience you will ever go through- to fight. And to hope. And to know that you did all you could.

Most likely, though, you will walk out those doors with a miracle in your arms. With a smile on your face- with a conquered look. You will walk out with them, and know that they are with you. For three months, for three days, for three years, for thirty. You will stare at them, forever changed by the reward that they will bring to you- by fighting.

So for you, fight like hell. Pray like mad. Cry until there is nothing left in you to cry. Hope until the last moment. Love like you have never loved in your entire life.

It will be nothing like you expected, it will be hard, it will be beautiful. It will be your story to share with the world someday- and you can say how much value a little life can hold. A little, imperfectly perfect life.

Love

A Heart Mom
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