1.30.2013

Global Cerebral Atrophy.

"And if he has no arms or legs we'll hang him on the wall and call him Art."

For a second it was morbid, then it was eye opening, then a little morbid still. But it was true.

Months ago, we thought it had become reality.

"We don't know entirely what this means. He might never walk, talk, communicate. He might be closer to normal function than that." Tears poured down my face uncontrollably. I had resolved not to cry, but as a mother- there's no way you can't cry when your worst fears (second to worst fears) become reality.

"You have the worst job ever." I said to her through a teary, shaky voice. Her face was kind, compassionate, she almost seemed like an old friend. It wasn't a hateful statement, it was me feeling empathy for her while watching me listen to this news.

I looked at my son and I kissed his very sick little head.

Had I lost the boy that had come in here?

I don't think we did, now. But then, I didn't know. I didn't know at all if he was going to know me, if he was going to be completely unable to communicate, to smile even.

Would I ever see his smile again?

Nick and I felt like the world had collapsed. To fight for four months to get this 'news'. Did it change how much we loved our son?

No.

It only changed our circumstances, it would never change how much we loved him or how hard we would work to take care of him. If he survived this, if he got better... We planned.

We planned for a wheelchair. We talked about 24 hour care for him, homecare, suctioning. We talked about one thing that meant the most to us, that we would love him and take care of him the best out of any parent that ever had to deal with that.

Like we always had done, we would love him the best we could, even if he couldn't say he felt it.

And the phrase came into my head that Nick's Dad had said months and months ago.

"If he had no legs or arms, we would hang him on the wall and call him art."

And suddenly the phrase that followed came into my head.

"And we would love him all the more."

1.29.2013

The only thing I am truly proud of as a Mom.

It is absolutely impossible to say if I would choose the same things for Gabe now as we did then. Would we want to put another little one through all that? Certainly not the last 5 months of his life... But let me say at least this.

I am proud.

I am proud of my husbands choices and my own choices in our last pregnancy. We didn't know anything about what we were thrown into in those moments.

I'd never had to consider risking my child's life to test for chromosomal abnormalities. I'd never even had to think about chromosomal abnormalities. I'd never heard of babies dying right after birth, wouldn't they die before they were born if it was that bad? No. They don't always.

But 2 years ago, Nick and I had to face choices that we never knew we would have to face. As parents, it was terrifying. We knew one thing.

Our child's life was precious, no matter what they had. We would fight for the moments we had with them, and we would make the best choices we could without bias. Including high risk clinic biases (which trust me, are pretty hard to get away from).

There is nothing more heartbreaking than finding out your baby is ill before they are even born. Being faced with the choices they give you in those moments is like being taken from a small town in Idaho and thrown into downtown New York City and being told to choose between working your way up the corporate ladder starting out as a secretary or packing your bags and going home.

There is nothing glamorous about having a child be born with a severe and complex issue of any kind. It's not fun.

You focus all your energy on those moments where you can love them the best you can and the best God can help you to.

Their whole life is choices. From the second they are born you have to decide between option 1 or 2 and option 2 is letting them die and option one is putting them through the thick of it in the hopes that they want to fight and they want to live.

No one can tell you what is right or what is wrong. Not even I can.

But I can tell you this much.

Love them for as long as you can.

Let nature take it's course. (What I mean by this, is that if they will live, they will live, and if they will die, they will die. Fast forwarding it and putting the end of their life in your hands will only leave you with questions that you can never answer for the rest of your life.)

Meet them, greet them, and choose what you and your spouse and your God think is best for them. Do not choose because someone told you what is right or wrong. Search your heart.

This is YOUR child. They would grow up listening to you and you would help form their opinions and beliefs. What would they want for their lives?

Crying is not a weakness, and saying goodbye will hurt. It will more than hurt. It will leave a void where they were born into your heart.

Let them be born into your heart, and the rest of the choices will follow that.

Whether they are here yet, or they are still growing... They were born the second you knew you were expecting and you began imagining their spot in your world.

Those of us with good imaginations are a little better at this, I've found. But imagine the perfect moment.

If they are so ill that they may not survive one surgery, what would you rather have with them?

One peaceful moment with no tubes, no wires, no surgeries and just love?

Or a surgery that might leave you without that moment?

That, my friends, is the most difficult first decision I have ever made as a parent.

But I am still proud. I'm proud I chose love and life and hope. :)

And I'm proud of my son, most of all, that he chose us. He put his hope in us.

1.28.2013

The leftover fears and ocean of memories.

I knew, 16 months ago, that soon my son would be born and I would probably not have much time with him. I didn't know if he would live or die.

Then he was born, in three pushes, at 2:20 in the morning. I saw him and he was mine! He was so sweet, so small, so uniquely my son! But immediately, he had to be taken away and I couldn't see him until they had looked him over and done tests and scans and put an IV in his belly button.

The emotions of having a newborn baby are so intense, the love so intense. I was exhausted, but I couldn't sleep. I was waiting to see him, to see him one more time.

Soon, I saw him again, and even sooner, he was taken to another hospital and Nick went with him and I was left alone.

I was in my room, alone, with facebook and a blog and introducing the boy to this internet world... my pride and joy! But I could hear all the other babies with their families. Babies crying and being taken in and out to nurse and cuddle.. Something I hadn't really gotten to experience with either of my kiddos.

The pain of those moments fed by the fears of what might not happen after them... I was lucky to get out of that hospital quickly and over to see my little boy for a moment before he was intubated.

They don't disappear, those feelings of fear and helplessness and intense emotions, and they breed more fears and more feelings of being out of control. I have no control over what happens this time! I am going to do this again, have a baby, and I don't know what will happen! I've never had 'normal' yet, will this be it?

Will I get to have the baby and then hold them and not give them back? Will I get to nurse them and bond with them and stare at them, those moments I have longed for so desperately? Those first moments, that I will never, for one second take for granted.

There is so much beauty in this journey we are on again, but so many fears are hard to push aside. So I have to keep reminding myself beyond my own self doubts...

"You are capable of handling anything that happens... But I think that God knows the desires of your heart more than you can imagine... and I think he is whispering a gentle and life changing experience... the one you haven't gotten."

I know God loves me!

I know he loves my daughter!

(How strange to say such a thing!)

So I am trusting in him to give me these desires of my heart and to protect me from these fears!

1.26.2013

Hello, I'm a Christian.


Your disbelief or hatred for my beliefs doesn't effect my beliefs. It doesn't upset me if you don't believe as I do, because I don't need you to. It's not a requirement of my faith that I force you to believe what I believe. It's a requirement of my faith that I love you despite our differences. I believe, I have faith in Jesus, in God. If that bothers  you, if you feel the need to tell me what my beliefs entail, you feel free. But don't do it without understanding the entire context of the beliefs you are quoting. Instead of going in looking for a fight for what I believe, why don't you just ask what I believe?

I believe that your life has as much value as mine, no matter how you choose to live it. I believe that you are loved deeply by a God that I feel and know in my heart. I believe that you were forgiven the same as I was for all the sins that you may or may not have committed. I believe our sins are equally painful for the one who died for them, no matter what 'degree' you think they hold.

I don't believe that I can look at you with hatred or disgust if I am looking at you through the eyes of my God. I don't think I can look at you without a love that even I myself may not understand if I am seeing you through the heart of God. That's called Agapi love. It is hard to describe to those who haven't felt it. Irrational love for people who you would otherwise not glance twice at, for people that would otherwise make you uncomfortable.

When you love someone irrationally, it's a God kind of love. You love them despite their beliefs and despite their differences, because you know they were created by someone who adores them.

Hatred has no place in the Agapi love of God.

This is my belief, because I believe what God says. He says you are beautiful and worthwhile, you are imperfectly perfect and I am no closer to perfection than any other person.

Do I live up to my own beliefs? No. I find myself looking at someone with irritation, annoyance, disgust, even, from time to time. It humbles me to know that God is not proud of me in those moments.

What my beliefs mean:

POLITICAL PARTY

Politically, I do not fit with either party, not democratic and not republican. This is really hard for voting purposes. I do not believe in forcing my beliefs on others, but I also do not believe in inhibiting others rights to fight for their beliefs, no matter if I agree with them or I do not.

ABORTIONS

I do not believe in abortion, but I do not believe in outlawing it for the reasons that I have developed from personal stories and experiences. These reasons include the fact that someone in our family is suspected to have hurt themselves in order to end an unwanted pregnancy and in the process could have killed themselves over the issue. I cannot judge this. I also cannot judge someone who has chosen to terminate for medical reasons because they believe their baby is in pain in utero.

I, personally, would never have an abortion. I value life and I believe that my child should live as long as I am capable of supporting them and as long as they fight. I value a pregnant before I even know I am certainly pregnant. I dream of a life that has yet to be born, before I know it is even there.

I believe in counseling and fighting for life, and talking to people about the effects of abortion, the facts of abortion, the loss of life that abortion does certainly cause. I believe abortion is wrong, based on my feelings and experiences. But I also believe that killing yourself to end a pregnancy is horrifying.

Someone once told me that the babies aborted in utero are instantly in heaven, and knowing that gives me some sort of comfort, but does not change my feelings on the issue.

This does not mean that I do not hold a great amount of compassion for those who choose it. My heart bleeds for them, for their baby, that they would think ending a life would be the only way to keep living. Medical Abortions bring a lot more complex and complicated beliefs, and I could talk about it for a long time.. but I suppose you have gotten the jist of my personal beliefs on this matter.

GUNS AND GUN CONTROL

I, personally, do not like guns. My husband loves them, most of my family do not have issues with them. I feel sick and nauseous and dizzy when holding a gun. It's not one of those things that I want to do, which is pretty surprising to myself considering how much I like other things that give you a lot of power.

I do not believe that guns should be banned or taken away from families. I believe families should be able to protect themselves and their children, go shooting at shooting ranges, hunt. I believe it is a right in the constitution for many reasons, and I do not believe it is outdated.

I do believe that there is nothing wrong with having to register your guns or weapons, so long as the government does not try to use that information to infringe upon rights to protect yourself and own a weapon.

My Aunt was murdered by a psycho with a gun. But I am fully aware that it was because he was a psycho and not because the gun was evil. He shouldn't have owned a gun, given his history, and he was clearly mentally unstable, but the fact is that I believe he would have murdered her with or without a gun. He was psychotic. Anyone who is willing to murder people, who wants to murder people, will find a way. Especially if they are the level of psycho that they are planning it out.

The best way to prevent this from happening, in my opinion, is to provide counseling, places to check in if you are having feelings like harming yourself or others, and having many more resources for families with children who have mental disabilities. Right now, there is not nearly enough available to help these people with severe mental issues. Parents have to basically lock themselves away with their child and hope for the best.. and pray that their kid gets arrested before they snap and kill someone. Hospitals will not keep mentally ill patients for long, they medicate them heavily and send them back to their families.

The way to help the mentally ill not commit horrific crimes is to be there for them as a community. It will still happen, evil will always exist, but taking away guns from people who abide by the law will only leave us more defenseless and turn America into another Europe... and I'm sorry, psychos live in Europe too. (Or did you already forget subway bombings and anything else on the news that you didn't want to remember due to your agenda).

BEING PERFECT

Haha, this is sort of a joke. I kind of covered it already, but I want to point out how flawed some of us can begin seeing our own beliefs. In striving to be good and holy, some of us tend to forget we are incapable of it and then start feeling like everyone else should at least be trying too, and if they aren't we start getting all judgy and mean and forget our first rule. Love each other.

Yes, I believe in trying to kill each other with kindness and forgiveness and love and caring. I also believe in being human and completely screwing it up and apologizing and trying all over.. and then sometimes our egos get in the way and we end up screwing that up too.

Honestly, I believe in forgiveness and in love, and those two go hand in hand. Over and over and over and over again. Until you feel sick. Until you think "My gosh, how can anyone forgive me, or how can I forgive them again?" And then I also believe that we will screw that up.

I guess I believe in screwing up. :)

All in all, this post has been to clarify a little of what I believe as a God fearing, Jesus believing kind of a person.

But that doesn't mean I didn't screw it up! :)

Pray for Gabby... Urgent.

Gabby was born with the same heart defects as Gabe (an even rarer combination than HLHS, HLHS and an AV Canal Defect) and has been struggling for the past few months.

She came down with Pneumonia, ended up being intubated and then finally unintubated last month, and now she is doing even worse. Her cardiac and pulmonary function is deteriorating, her kidneys seem to be starting to have issues making urine... (from what I've gathered from her updates)...

Her family now feels like they are facing the inevitable end of their journey with little Gabby, and we know all too familiar that hopelessness.

God is the God of hopeless situations. I believe that, even though our hopeless situation did not improve, that doesn't make me question the power and abilities of prayer and petition.

Please, pray with us for Gabby. Petition with us on her behalf.

https://www.facebook.com/TeamGabbyHlhs?fref=ts


Videos

The following video is the blue sock video. The videos after that are very personal to me. I took them with no makeup on (lol) with INSANELY crazy morning hair. I don't know why, but I did. :) They were only supposed to be for me... but I feel compelled to post them for those who feel a connection to Gabe.

































Little blessings in big ways.


The day before yesterday, I was filling out a list of joyful things, three things blue... and for some reason I suddenly felt as if the final blue thing I was thankful for was a blue sock.

What was this blue sock? I really didn't know. I know many things of Gabes were blue, I knew that his photos were tinted blue from our last 'photoshoot' together... But a blue sock? But for some reason it was what I felt I was thankful for.

The next day, I picked up my old computer off of a shelf (it needs a new battery and only works if plugged in) and plugged it in.

I was planning on getting photos of the little ones I had taken photos of in Seattle to edit with my new photoshop actions that I am having fun with... But I started looking through the photos and noticed I had deleted a lot of them to clear hard-drive space.

One folder was incredibly messy, three folders within one and not very many photos in each one... I went through them and then saw a video of Gabe. I figured I had probably seen it months ago and it was just a quick one with no noises from Gabe... and sat there trying to resize it so I could play it (it was huge on the screen since it was taken with my T3i camera). Finally, I got it to the right size to play.

It started and I held my breath.

Little Gabe, so clear and so sweet- just being a little baby boy.

I watched and then heard the noise I had been trying to imagine for the past year. Yes, for the past year. I hadn't heard Gabe's voice for nearly a year until yesterday. (minus one or two months).

But there he was, quiet, sweet. I handed him a blue sock, I remember the sock, getting it out of the clean laundry- why would I give him a sock to play with? I don't know... but this blue sock was there, in this video.

He was grabbing it and then dropped it. In frustration, he let out a tiny frustrated noise. So quiet, so sweet. Then he went on to talk a bit, then get excited...

To hear his voice again, not try to imagine it... was so nice.

I am going to post that video in a different post, since the blogger site won't allow me to post it at the bottom of this post. :)




1.23.2013

Bonding through loss.

Today was a prenatal checkup for me. My Grandma, Grandpa and cousin watched Judah (he did great, he loves their house!) and Nick and I went to my appointment hoping that we would miraculously score an ultrasound and find out what we were having. (No, didn't happen this time, hehe).

Our clinic is really tiny, one doctor and one nurse. It was full of people in the waiting room today while we were waiting (apparently Wednesdays are 'ultrasound day!')

I've seen our nurse a few times now- she is a petite little lady, probably close to my age, and hasn't really had much to say to us any of the times we've been in.

Today she walked us in and had to ask me some questions for paperwork. She filled out a worksheet with questions like "Any history of neural tube defects?" "Is this a donated Egg?" and then "Any history of Down Syndrome?"

I said yes and she hesitated a moment.

I always wonder what people are thinking when they hear this, if they have heard a lot of medical jargon (which mostly refers to the issues related to Down Syndrome and none of the positive aspects, of course)... or if they just are surprised since I am still young (which is actually common.)

She hesitated and then asked "One of your relatives, Aunt, Uncle, brother?"

"No." I said, "My son had Down Syndrome. He passed away a few months ago." I said, trying to be tactful and not shocking.

"You're making me tear up." She said, pausing her writing for a moment.

"Oh, I'm sorry." I paused. "We are just really glad we had him while we did." I said, trying to bring a light to the joy aspect.

She started taking my blood pressure and she paused for a moment, deciding something.

"I lost a son too." She said. "His name was Bear." She pulled up her sleeve on her left arm to reveal a tattoo for her son of a bear claw in green.

"Wow!" I said. I wanted to ask her how she'd lost him and other questions, but I wanted to also be careful not to pry. "I have one too!" I pulled up my left sleeve to show my tattoo in the same spot as hers, positioned very similarly.

We both looked kind of shocked at each other, and suddenly we knew each other a lot better.

We shared something, and we recognized each other in that way.

It's incredible, at times, how pain brings us together with people who we would never suspect. My face doesn't read 'I'm grieving!" and no one would recognize the look in my eyes when I feel pain over how much I miss my son... but when you know that someone has been where you have been...

You recognize that pain in each other and feel somehow connected, even if it's someone you might not have been able to connect with otherwise.

We were both Mommies, and we both lost our babies.

And somehow, that bond is deeper than a lot I have seen or felt before.

1.20.2013

My boys :)





"I'd rather heal than move on."

A quote I read today about dealing with grief.

Whatever you are grieving for, ignoring it and moving away from it without recognizing it's effect on your life will not let you heal.

1.19.2013

scars

I think I've found in these recent months that pain changes as it grows. It starts out raw, and then scabs and turns into a scar- but not just any scar... the kind that hurts forever, the kind of scar the very nerves in your skin are forever changed by. You touch the scar and the ache is there, different and even more painful in some ways because you know it won't go away. It will heal more over time, maybe the nerves will ache less, maybe not, but it won't leave.

I will never stop missing my son, and that's okay, because he will never stop being my son.

1.16.2013

Grief Journal: 4 months, 24 days. 20 weeks.

The past 4 months have been a roller coaster, though not as bizarre as I thought it would be. In fact, the pain of missing Gabe is just now getting worse. Searing, some nights.

The week before his funeral, the day of his funeral, my emotions were paused and though pain was there, it didn't translate into emotion- into tears or into reality half the time.

Though the world had changed suddenly, the change was small- since the boy I had lost I had lost slowly, for 5 months. Maybe it was better for us to let go so slowly of him... Maybe it was worse. We never let go until that moment. You know the moment- the moment his life force left his body and I felt him go from my arms.

I have talked a lot on here about the emotions surrounding this loss- but loss doesn't always have emotions that make sense. When they do, it's almost a celebration that what you are feeling is somewhat normal.

Today, I literally ache for my son, Gabriel. Worse than it's ever been, because I know how he can never be replaced.

I follow a lot of blogs of little ones with Down Syndrome, I have a lot of friends on Facebook who have little ones with Down Syndrome... So I see Gabe in a few of them often.

Ryder has so much that reminds me of Gabe in his face, his mannerisms... It's like I get to see a glimpse of what might have been had Gabe thrived like he is thriving.

If Heaven would only give me my hopes and dreams for one day, I would have three little people in my home this summer.

I would have two boys in my arms now... two brothers beaming at each other.

If imagining that is worse, then so be it. I have to imagine it because it is my hearts true joy to imagine what I imagined for so long that I would have again.

I can't describe the spirit of Gabe on here, but I would try. Gabe was sweet, gentle, but determined. He had delays, but he was so smart. He knew something about you when he stared into your face. Something you could see reflecting through him back into yourself. He knew your goodness.

Have you ever missed the one who could shine a light into your soul and give you faith in the goodness of all things?

It is a difficult thing to miss, the purity in that little soul of his.

Judah and Gabe definitely looked like brothers, but I have a hard time seeing the 'Gabe' in Judah, and I wish sometimes if I stared hard enough I could see it, but I am afraid they are just too different.

The beauty of their relationship is I knew how good they were for each other. Gabe could teach Judah so much, and Judah could teach Gabe so much too. They complimented each other, as brothers, as friends... I could almost see them as adults when I watched them together.

I could almost see them in high school, and I could almost see Gabe's purpose in every aspect of our lives...

But apparently that was not his entire purpose.

The other day, someone said to me that by missing Gabe I was defying God. They also said that God had determined when Gabe would die, and suddenly something new clicked in my brain.

God didn't pick the moment Gabe died.

We did.

I know God was there, and I know God was with us... but we, with our free will, prayed and listened and heard no voice that told us Gabe's last moments were here. We, flawed as we were, determined that Gabe's fight would not be drawn out any longer as he looked so sick.

We, flawed as it is, chose when our son died.

I'm not silly enough to believe that God couldn't have ordained him to live or not, but I am also very well aware that God did not ordain him to live at that moment, nor did God kill Gabe. God did not take our son away. (And I do not believe God 'takes away, as God told Job that he was wrong in his thinking and that quote is a quote from Job).

He took his hand and led him out of the room when his life ended.

I believe that God's presence is the key in those moments. Does God kill babies? He has to be a pretty hateful guy if he just rips away babies from wanting parents hands, and that's not the God I know. God comforts us, catches us, holds us.

That is my key in this.

Gabe, the boy I miss more than I could ever miss my own lungs, he is experiencing the ultimate peace... and we are the ones who need comforting now.

1.11.2013

Rainbow baby!

I guess I probably should 'officially' announce our news on here, since I sort of casually think I mentioned it rather than posting.

First I will define rainbow baby: A baby conceived after the loss of a pregnancy, infant or child. (signifies hope and promise of a future)

Nick and I talked about when we would have another baby after we lost Gabe... and before the plan was pretty much to avoid that at all costs until Gabe was done with his bi-vent repair.

Well, I suppose we probably shouldn't talk about having babies, or think about it, or wonder about it- because what do you know! We are having a baby in July (I'm guessing the 3rd or the 5th, probably not the fourth because that would just be too sweet!)!

We kept it a secret... Well, okay, I kept it a secret. Nick is terrible at secrets. He feels like secrets are 'lies' and felt like he was going to die if we didn't tell his parents 3 days after we found out... So they knew from the pretty much 'get go', and then before you knew it Pastor Ralph knew... and then everyone at Nick's work (including a random friend of mine from high school)... So anyhow, I kept it a secret. Nick, did not. Haha, I love that man despite his silly ways.

So anyhow, I was incredibly nervous. Mostly about what people would say, because as much as I want to imagine that people (especially my family and my Christian friends) would not have anything to say, you all know that unfortunately, humans talk and say things that are hurtful and then go even beyond that to say things that are just silly.

I was also incredibly nervous because, although I know these talks are silly, we just lost our son to a heart issue and Down Syndrome. Yes, geneticists can sit there and tell me all day about how my odds are less than 1 percent of having anything like that happen again. They can tell me the heart issues were related to Down Syndrome and that Laryngomalacia is the most common issue babies are born with, and has nothing to do with anything you did.. But that little voice in your head, the really naughty one who is terrified constantly of the 'worst', told me "Go on google and look up every possible birth defect on the planet so you are totally prepared this time."

Well little naughty brain section, you are incredibly morbid, first of all, but you also didn't need to look at pictures to 'desensitize yourself' to any possible horrors.

After all that 'preparation' for the worst I awaited January 7th, the day of our ultrasound... and oddly the day we found out that we were pregnant with Gabe two years ago. (Where does the time go?)

Let me tell you something, there is no wifi in those rooms that they make you wait in before your high risk clinic ultrasound. You have to sit there, quietly, with other expecting parents- not talking, because if you start talking to other parents in the high risk clinic you could immediately find yourself sobbing along with them- and you do not want to start that, trust me.

After watching a family walk out sobbing (which I remember oh so clearly..) I was prepared myself to walk in and see a nuchal fold the size of texas, or worse yet hydrops the size of Texas.

Nick let me play some ski-ing game that distracted me slightly from tapping my leg clear off of my body.

Finally, they called our name (I wish we hadn't been so early to our appointment).

We went back and met with the geneticist who talked to us about Gabe's scan results and went over our family history with us to determine our 'low risk' results of genetically inherited abnormalities. These are people that you really don't want to see again, they are not very uplifting, although she did remind us that the odds of anything being wrong were pretty slim to nothing. (What does that even mean, the odds are low? Gabe's odds were pretty much zilch of being how unique he was, odds are total crap).

Anyway, we went in for our ultrasound finally and the lady got the machine going and voila, there is a little, completely formed baby standing on their head. Their head. Yes.

I started laughing because they just looked so funny like that, and then the baby proceeded to show off their Olympian moves. I'm not joking. This one might be more active than Judah (Lord help us).

They had their legs straight out and their arms straight out above their head most of the time. Jumping up and down, spinning to their front and back... They looked like they could be preforming in some kind of dance dance revolution game party. It was incredible.

Finally, the baby was still enough (well, sort of) to get the Nuchal fold measurement. 1.2mm (at 13 weeks 4 days measurement of age). Barely any nuchal fold at all, really, compared to Gabe's. The risk of a chromosomal issue after that is pretty much zilch.

Here I am, getting this reassurance that the heart and chromosomes are probably fine, and my heart drops a little in finding out that our odds of having another little one with Down Syndrome are pretty low. (I know, I am a little strange, but all the Mom's in the Down Syndrome community assured me I am not crazy and this is normal). You might not understand this, you might think I'm bizarre beyond all measure, but yes, I was a little teency bit sad that this baby looks so normal. (Besides being an Olympian).

Anyhow, that feeling was also replaced by the joy of the low probability of heart issues (though we know that Gabe's heart issues were more than likely completely associated with his extra chromosome).

Then! They had warned us before the ultrasound that we wouldn't see four chambers because it was just too early. Well, Nick and I saw them before the ultrasound lady even did. We've stared at enough echos to know what they look like, and gosh, those four chambers looked pretty darn great. (Of course that could always change slightly by the next ultrasound at 20 weeks, and we have an echo to confirm with Dr Womack (Gabe's cardiologist in Boise) at 20 weeks as well... But we sighed out a huge sigh of relief. What an amazing thing to be able to see when you can't even see kidneys yet!

We also were able to see the stomach (which she said meant baby has already started swallowing fluid) and the bladder, (which she said meant the kidneys have already begun working, even though we can't see them yet because they are so tiny).

She also tried to get a good look at the 'nub shot' (don't ask if you don't know, lol) and the baby wouldn't cooperate with that, although the baby looked strangely girly to her in the parts area. We will see what comes of that (we have a boy name picked out and ready!), but either way, we are just thrilled that they look so healthy and whole.

So, the little one is due around July 10th, so I'm guessing the third or the 5th...

And of course we will update with ultrasound pictures and health reports.

(another tid bit- our ultrasound tech was the same lady who helped diagnose Gabe's heart issue and possible Down Syndrome, and she was so lovely to us when the doctor tried to pressure us into an amnio, I was so happy I remembered her kind spirit!)

Oh, here is a picture of the little one's face for you people! chin, lips, nose, eyesocket, up top, tiny nuchal fold on the bottom. :)


Outreach to housing for families of children's Hospitals.

Nick and I spent the entirety of Gabe's life living families who all had very, very ill children. Cancer, Heart Issues, Esophagus issues, Tumors, Brain issues (strokes, ect), Liver, Kidney, on and on and on.  Some of the issues were treatable and 'fixable' but most were 'hopeful' treatments. Most of the families were holding on to a string of hope that their child would be better when treatments were over.

Families that were deep into the thick of it often retreated from each other (as we did) because of many reasons- one being the exhaustion of what you are going through compiled with the exhaustion of reaching out to other families time and time again to watch their little ones often NOT get better.

We 'lost' a lot of little ones. The first one and second one are so vividly there that the pain of realizing how easily lost they are is still there. From then on, we were afraid of getting attached, every loss felt so much like 'our' loss. It felt so personal- it's hard to describe when it's so close to you.

These families are going through so much- they are away from their home, they do not have a private kitchen (and many times not even a private bathroom). They might have lost their jobs to be with their family members, they may have to be separate from half of their family to be with the other half. They sacrifice normalcy for hope.

Some of them (many of them) are financially shot. They rely on the hospital (social workers) for a little extra help with food money and even diaper money at times. We remember when the nurses stocked us up on a few packs of extra diapers when Gabe was discharged from time to time, and how thankful we were that those were available.

The Ronald McDonald House had one breast pump for use of mothers who were trying to supply for their little ones in the hospital, and we were so thankful for that, but it wouldn't have worked out if there were more than a few of us using it (It was a hospital grade pump that was fully sanitized after every use).

They often times would have supplies like Milk collection bags or bottles for these Mothers that were often donated by families of the Ronald McDonald house, or even stickers for the labeling and permanent markers.

They supplied meals for us many evenings, all sorts of churches or organizations came in (including the basketball team of 'giants' that Judah was amazed by).

All in all, what I am getting at is that these families have a lot of needs... A lot of needs that are VERY fillable.

Toys for Tots brought in Christmas presents for our little ones that we got to pick out of a big room of presents last Christmas... We had so much fun being able to give Judah (and Gabe!) a few things that we couldn't have provided on our own at the time.

Some Ronald McDonald Houses have closets with clothes for families to go and look at and pick out. Size nb-toddlers.

The Ronald McDonald House relies on donations for dry food storage... Oh can I tell you how wonderful it was when they brought in all the donations of 'toddler friendly' foods and snacks that we could just throw in Judah's diaper bag and run with to the hospital.

Toddler sealed and non expired, non refrigerated snacks that are helpful:
Those on the go fruit pouches with the twist of lids that they can slurp up (and are healthy, yippee!)
Animal crackers, Honey Graham crackers.
Granola Bars, Pretzels
Dried fruits, chips (as healthy as you can go)
Any other toddler friendly or baby friendly foods and snacks that are sealed, easy to use.
Juice boxes! Greatest thing ever for an on the go tot!
Some 'not so healthy' snacks are good too ;) Like cookies (nabisco).
Little boxes of cereals (those mini ones, or the ones in plastic bowls ready to go)
Sealed fruit cups that do not need to be refrigerated.
ect.
(Also, donating baggies for these to go in, ziplocks are always something they are thankful for)

But these supplies go fast, of course.

Donations of Formula are great too (sealed, unexpired), for families who could use the extra. Baby food, canned foods (soups are great for quick meals for Mommies inbetween the hospital and home).
Teas, sugar packets, hot chocolate packets, creamer packets, instant coffee... There are so many things that were so nice to have available.

Baby wipes would be a great donation, and diapers of various sizes! The main office usually kept this stuff until you asked for it, but it worked out great for families who really needed this stuff.

Anyway, I guess this blog is to remind ourselves what we would like to be able to help out with when the time comes!


1.06.2013

What is a blessing? Does it look like what we think it looks like?

I had a dream last night that I faintly remembered during church today. I was hugging someone and crying telling them I was just really having a hard time. It came rushing back to me when I realized that it was all very true, and I certainly have been having a rough time. I am literally sick over how much I miss Gabe recently. I almost feel like it's a craving to see him, hold him, touch him... and that can be hard to deal with since it is not possible.























I find myself trying to fill that void, staring down blogs of little ones with Down Syndrome, in awe of their little personalities, in awe of their little lives, and soon it turns me into a slightly green color of longing... Which turns into pain for the one little person that I cannot have.

Who knew half a heart and a body full of extra chromosomes would be my greatest joy and greatest loss?

What does a blessing look like?

We, as believers in God and Jesus and mercy, talk about blessings a lot.

A Christmas card I got this year said one line "I pray that you and your family receive blessings this year." Blessings was underlined, and it brought a sick feeling to my stomach.

Was last year not a blessing?

Was I not blessed beyond any measure that humans have to measure with?

When I found out during pregnancy about Gabe's heart, it certainly didn't feel like a blessing. God's blessings are like perfectly wrapped presents, right? They are definable, desirable, easy to see, right?

When God hands you a blessing, do you recognize it immediately? Do you hold it up and wave it around and say "Look how God has blessed me, I must have done something incredible to deserve this!"

Desirable.

God finds me desirable, and his desire has always been to give me the desires of my heart.

What if- bear with me. What if I do not know my own hearts desires?

How silly a thought, to say "I don't know what would bring me the greatest joy." But I didn't.

I didn't know, when half a heart laid before my eyes, that that half a heart would bring me the greatest blessing and the greatest joy on the planet.

Some people looked at what God had given me and said and thought... "Wow, she must have done something wrong to have that happen. It's undesirable, it's sad, it's horrible, it's tragic, it's imperfect... It's not normal."

Some people looked at my blessing and thought "Well sure, he's cute now, but wait until he grows up and he can't take care of himself on his own or have a well paying job."

They thought "If I would have known, I would have aborted him. I can't imagine raising a son who might not ever be capable of talking.. and would require so much care and effort."

Someone said "He wasn't meant to live, they should have let him die when he was born."

Someone looked at my package, no silver string, no wrapping paper, no sparkling tag. They felt that it was worthless, a dollar store present at best, and practically a curse.

I looked at my package and wondered what in heavens God was thinking when he told me I was capable of handling anything.

But I knew that he was mine, and that I would love him, and that my package was my own and no one else had gotten one quite like it.

So we took our package, as some scoffed and some pitied us, and some asked us what we thought we did to deserve such a strange gift... and we began to unwrap it slowly.

It looked different than any blessing I had ever seen. It started out so small, so unusual, and pretty goofy looking at times. It was sick, it was unlikely to live, and it was a lot of work. Our other son looked at our package and he raised an eyebrow..

"Baby." He said. It was his baby, he thought. The one Mommy had talked about. He had a tube in his mouth and his eyelids were swollen and then soon his whole body was swollen as he tried to heal... But it was our baby. It was a baby.

The package was sick, and sometimes I stared at it and I wondered if it would be here for a moment longer or if it was so temporary. "What on earth did you have in mind, God?" I thought as I touched the still baby before my eyes. But I found myself finding that my package was so unique that no one else could quite relate to my gift.

My family stared at our package and they thought "I wonder how God could put our children through so much, watching this happen to their own... How could God give them this package?"

And I felt something begin to bloom inside of myself.

Walking to the hospital to see my tiny, slightly defective, package...I ran into a man. He was in his fifties and he was mentally disabled. He was full of joy, he was loud, he was happy, he was a package I'd never seen before.

Tears fell down my cheeks as I wondered if that tiny, wilting package in the hospital would ever grow to be fifty. If he would greet people on the way by and make them smile. If my small, defective package would ever be so lovely as this.

Lovely. I stared at that man, who was clearly imperfect, and I saw him differently suddenly. Could he have been a blessing to this world? Could he have been a blessing just for me?

I held my tiny package in my arms and rocked him and stared at him and wondered over him constantly. Would he live a long life? Would he be two? Would he be one? Would he be able to do thinks like Judah could?

Our package grew sick from time to time as he healed from his heart surgery. He was so slow to get out of the hospital, and we finally were able to take him home into our arms.

I rocked him, I bounced him, I stared at him and I was in awe of him.

Someone was finding out that their child had this today, had Down Syndrome, and would be different. Was it so scary, after all? Was it so scary to imagine your gift being so different than everyone else's?

Our tiny gift turned himself up on his side, spun himself in circles and grabbed his toys. His muscles grew slower than others, his muscle tone was lower... but he was busy, just like his brother. He began to talk, telling us things in "ooohs."

He began to smile, to beam (especially at his brother) and Judah fell in love with him. He was his brother, he was his blessing.

Soon, I was afraid that I would lose him. Soon, it was time to take him in again for another surgery and another risk.

"Why God, would you give us this package... That no one understands, and then let him die?" I wondered, before he even had surgery.

I resented the thought of giving my son up after we'd fought so hard for our tiny, imperfect package.

He smiled at us, he giggled when he was tickled, he was a normal little baby. He was our special package, with eyes so deeply grey that it was hard to even stare at him for how beautiful he had become.

Then our package went away. He went to sleep one day, and that was the last time I saw his smiles, heard his giggles, felt his eyes penetrating mine.

Like a slow goodbye, we watched him fade in and out until we were sure that God had turned a blind eye on our boy. We prayed and hoped and watched and prayed... until we felt that our prayers were falling on deaf ears.

Could God give us such a unique package, and let him fade away so painfully, and take away all hope for his life that we had not only accepted, but fallen deeply in love with... and could it have been the greatest blessing we could have imagined?

Absolutely. Breathtakingly. Assuredly. The best thing that ever happened to us.

1.05.2013

What a strange dream I dreamed.
I feel like this when I look at videos and pictures of my little prince.

Was it all a dream? Did I really hold him and love him and lose him?

Or was it so beyond my comprehension that it feels like a dream.

I am so lucky to have dreamt such a beautiful dream.

1.02.2013

I was born with a gene...

I was born with a gene that made me want to write and draw and take pictures. Maybe it's more than one gene, maybe it's a collection of genes that flew together into a triangle of "I'm sort of creative but not quite Mozart-creative."

My genes also established parts of the way my brain works, my hair color, my eye color... This weird fat roll that grows in the middle of my body even when all the rest of my body is perfectly skinny. I was made incredibly uniquely... I don't really relate to my siblings much...

They are not super artsy, although some of them dabble, none of them use it as an outlet (or writing for that matter)... They are computer geniuses (compared to me, at least) and mechanically marvelous. They could take it apart and put it together without a manual or a youtube video (maybe with a few less parts at times)- but I couldn't do that. I wasn't made that way.

When I was told at 22 weeks pregnant that Gabe might have Down Syndrome because of his short legs, I laughed a little mentally thinking that our son could have anything but short legs given his parents stature... and then I seriously considered it.

I looked it up online, and I fell in love with this little person that might be different. I am different, you see. I don't think like everyone else. I don't communicate like everyone else... I don't see the world like everyone else.

This little person was going to mystify me, if they were so special that they could change the way I had to look at the world to see through their little eyes.

Something in me felt very quietly that perhaps this baby was carrying an extra chromosome in all his little cells. Perhaps this little boy would be different than what people expected. Maybe he wouldn't be mechanically gifted, maybe not artsy... Maybe he wouldn't even say much. But he would have something to offer. Something I needed.

When Gabe was born, people were shocked that we were not in the depths of despair at the chromosomal diagnosis that followed... My husband and his family held onto the hope that maybe, he wouldn't have this extra chromosome that would take his odds down, that would change our world so drastically...

But I'd known, somehow. I'd known the second I laid eyes on him.

Gabe was my blessing, especially his extra chromosomes. Not because of them, but with them. With them, with the whole package.

Gabe did have a talent for something, he spoke a language with his eyes that I completely understood. He spoke love. Literally. I cannot begin to describe what I am trying to say here, but here is what I am getting at.

Gabe didn't need to be healed from his Chromosomes. He didn't need to be changed, he didn't need to be fixed... He didn't need to be anything different than exactly who he was.

He spoke a language to me that was purely soul- there was nothing clouding it. There were no demands around it, there were no expectations.

Down Syndrome is not a disease.

It is a release from the false perfection that many in society believe exists.

Losing Gabe felt like I had lost my blessing. It felt like I had lost this whole new world that I had not only accepted, but I wanted. I wanted Gabe in entirety.

I knew that he was destined for something great- and he could change the views of those around him by speaking this perfect language that God had put into him.
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