I Miss Him

I miss him...

When I listen to a love song.

When I watch a sad movie.

When I see other babies, and now toddlers, and well...pretty much any children.

When I see his picture.

When I play the piano.

When I go to church. (This is a hard one.)

When I'm in love with my husband. (This might sound weird, but I didn't want to put "when I love my husband" because then it sounds like there are times when I don't love him--which may or may not be true--but as far as the love thing goes...I think all you BLM's know what I'm talking about.)

When I go on walks. (Now an everyday occurrence in my life...maybe...)

When I do genealogy work. (Okay, so besides scrap booking and journal writing--ya know, my own personal genealogy work--I just barely started indexing, but hey--I gotta start somewhere.)

When I see a beautiful painting. (Or pretty much anything beautiful.)

When I go to the temple. (I always pray that I will see him there because I'd much rather see him there than in my home...that would just freak me out.)

Headstone #1

We'll call this "Headstone #1" because this is actually a MESS-UP. Yup. They made it wrong. The wording is correct, but the color of granite and polishing is all wrong. I asked for the darker granite, and also that the entire marker be un-polished or "rough". I know. I'm weird. I didn't want pictures or borders, or shiny granite. (I also was the one to wear a short wedding dress and get sealed at 7:30 at night...really weird, right?) Plus, it's very different in the way that we wrote out the dates. I guess you could say that I don't like commas or something. I really do like how the wording came out (even though I'm not a fan of the bottom font, but it was the only way to fit it on 3 lines--so I went with it.) And I'm very happy that I listened to my mother, the genealogist, and added the last line that reads, "First born of Kaci Goodrich & Salesi Uipi". (It needs to be hosed down and cleaned off, but I will make sure I do that with the new one coming next week.)

(Oh...and why the heck did we wait over a year to get a headstone for  Joshua?  I don't know--we just got around to it finally I guess you could say. Lame excuse, but true. Besides, Salesi wanted to wait a while for the ground to settle... It's a Tongan tradition or something??)

Still Hard

It's still hard...

Getting on Facebook to find someone who had a baby around Joshua's birthday, now announce they are pregnant with their 2nd baby.

Looking at pictures of Joshua at home--healthy--and trying to figure out exactly what went wrong, and WHEN did it go wrong?

Telling people we don't have any kids and hearing them say it's now probably a good time to start, since we've been married 4 years.

Never knowing what Joshua would look like and sound like right now, today.

Telling people about Joshua, but then having them not ask any questions about him, like--"what was his name, and what was he like"--Basically acting like he wasn't a real person.

(On a side note--Salesi told me that I say the word "basically" WAY too much. Can you count how many times I said it on here?)

I Look Stressed Out

Who likes to hear somebody tell you that "you look stressed out"? Ummm anybody? Salesi got a new calling and so now he's able to come and hear me teach Sunday School. (Well, when he has time...) So I guess today he came in my class for the last 20 minutes or so, and after church he told me that it's obvious that "I'm stressed and crying out for help up there..." Seriously? Do I really look like that up there? (It is 10 in the morning after all, and I'm not a morning person.)

Of course I did finish my lesson by showing the Mormon Message video titled, "Hope Ya Know, We Had A Hard Time." (Go here to watch it.) Before I played it I mentioned, "I really like this video because I feel like that a lot." WELL I DO! I AM HAVING A HARD TIME!

It seems like I always get in these talks with Salesi about how "sucky my life is" and how "I have no friends". Anyway, so we go back and forth and back and forth and he always tells me that "people are scared to be my friend because I look sad and stressed out"... Hmm, doesn't seem like there's an end to this one. Well, I actually do end it every time. (I mean--for the night at least.) It seems like I always remember a very important point: I don't need friends! I don't even have time for friends! (How would I have time for friends when I don't even have time to do the laundry?) And besides, I like doing things by myself!

It's probably better anyway that I don't spend time with other people--I'm just way too emotional right now...and stressed out of course. I mean, it would be pretty embarrassing if some of my emotions got the best of me while hanging out with other people. (I might never find out for sure, but it's probably better if I never do.)

The B Word

Of course I think about the "B Word" a lot. (Salesi asks me about it pretty much everyday.) All the time I read on people's blogs about how a "new baby is very healing..." Well, to tell you the truth (as if I need to remind you I'm going to be honest on this blog), I just don't know if I believe that... Or, at least believe it could be true for me. It seems like part of it just comes down to image. NO--I'm not saying that this is how it is for everyone else--but for me, this is how I feel. Let me explain...

If I had a new baby, it would seem like I've moved on, or at least taken a step in that direction, right? Not just that, but us women (especially us Mormon Women), like to "do it all", right? Of course the thought of me getting older is always in the back of my head (or front?)... Questions like: "If I have a baby in a year, how old will I be when they get married?" Or thoughts like, "How much cuter would our next Christmas Card look to have a baby in the picture?"

The truth is this: Not only do I not feel emotionally ready to have another baby right now, it stresses me out seeing other BLM's continuing down the path of bringing more children into this world, while I'm still indecisive about this whole CGD/IVF stuff.

Yes, yes, yes... I understand everyone is different, and this kind of stuff shouldn't stress me out, but that's only ANOTHER reason why I have a lot of (emotional) problems! (I will need counseling the rest of my life...as if I didn't go to enough sessions already.)

Alone

By Kaci Goodrich Uipi

I have felt very alone these past few days. I did a lot of crying today and I haven't really cried in a while. Today it hit me that I'm still "not over" all the pain, hurt and resentments that I feel and that I've only been masking these feelings with being busy or just holding in my emotions. I always feel tired, sick, angry and--to be honest--I just don't like the person I am.

I know I need to go to counseling. Actually, I was going to finally call the counselor today to make an appointment, but then I got too scared that I might start crying over the phone...so I didn't.

I know I still have resentments towards our new ward. The bishop has been great. However, it bothers me that I don't have visiting teachers (I don't even know who they are). Also, we finally just got a home teacher, or at least a home teacher who wants to actually visit us now. I mean, I know this is all normal, nothing too weird to "not know who your home teachers are for 6 months"...right? It's just hard moving into a new ward 7 months after your baby dies, and then not even the relief society president mentions anything to you the whole time while you are in the ward. I don't know what would make it better... Maybe just a, "When is Joshua's birthday?" or "How old would Joshua be?" Well, of course, it might be nice to first ask, "So, what was your son's name?" I just feel like he isn't a real person to anyone, and it makes coping with my loss a little difficult. 

Did He Know

Did Joshua know he would only be staying here a very short time? Did God Tell him that his Earthly Mission would last only a few weeks?

As we were making the decision in the PICU to take him off Life Support, my sister asserted, "Right before Joshua was born, God said to him, 'Now Joshua, I am only sending you down there for a little while, and then I need you right back up here where you belong'..." 

Whether or not that really happened, I suppose that Heaven is definitely the place where Joshua belongs right now.

The Beginning Of The End

Joshua at 9 days old waiting in the ER for a more permanent room in the Pediatric Ward at St. Joe's Hospital in Phoenix.

If you look closely at this picture, you will notice a 9 day-old baby with perfect olive skin, a perfect shaped head, and the perfect ability to sleep and breathe on his own.

If you look much closer at this picture, you will notice a large bruise on Joshua's left hand. This was from the IV line he had in him during his 3 day stay in the NICU following his birth, hence the IV line stuck in his head this time around.

If you look really close at this picture, you will notice a beautiful little baby who is about to leave his mommy and daddy and end his mortal existence on this Earth.

Did you see it?

Joshua was so perfect in every way...yet he wasn't. I didn't know it at the time, but this really was the beginning of the end for Little Joshua. This is the very last picture we have of him where he still looks healthy and normal. (Besides having that stupid thing sticking out of his head, of course.)

I miss him. I've been thinking about potentially bringing another little one into this world but, it scares me. It really scares me. After pondering the last couple of weeks about whether or not we should conceive a baby naturally, I've realized that it scares me too much to consider that option. A 1 in 4 chance is way too risky for me, no matter what others say or think.

And right now I still have so many feelings locked inside of me, that I'm not sure when the time will come to make that final decision.

Done With Kids

Sometimes I feel like we are done having kids. It's as if we already raised our kids and now it's back to just the two of us doing our own thing because our kids have moved out of the house. Weird. Or, maybe I don't want to think about having kids right now because I'm finally enjoying my life just a little.

Well I can't do anything anyway until I have a followup appointment with my Pulmonologist about my Valley Fever blood test. Weird again. He wanted me to wait to get pregnant until he knew that my Valley Fever status hadn't changed in 3 months. (Man, I sure am personal on this blog.)

I'm still not even sure about the whole kid thing. (I can think of a million excuses as to why I would be a bad candidate to bearing and raising children, by the way.) Why is it when you want kids you can't have them? And when you don't want kids it's as if you know you should have them?

Painting of Joshua

Can you tell what my favorite Christmas gift was last year?

My sister Kelley made this for me. (Pretty good eh?)

Why Don't You Have 10 Kids Yet

By Kaci Goodrich Uipi

Here's a little something funny... or maybe not. (At least I'm now laughing about it.)

While in Utah my sister Kelley decided we should go to the beauty college to be pampered (or something like that). So as we were sitting there getting manicures (which BTW don't EVER get manicures at a beauty school. TRUST ME.) Kelley's student kept going on and on about how she has 7 kids and her life is so busy. She then made a comment about "not being that old" and "only being a few years older than this girl over there". (She said this while pointing her finger in my direction.) She then added, "Yeah, where are your 10 kids!?" Trying to be polite I responded with, "Oh, well I didn't get married till I was about 28."

Now here comes the funny part... When we got home later that day, I reminded my sister of the rude remark her student said to me. Kelley exclaimed, "Kaci! She wasn't even talking to you! I was so shocked when you answered her because she was talking to the girl behind you!" I still didn't believe that her student was talking to someone other than me, but I finally decided to move on and just go with it. 

Let me just add one more thing... I was SO close to saying to her, "Why don't I have 10 kids yet!? Well it's a little hard to have 10 kids when you don't get married until you are 28 and then your first baby dies!!" Yeah...that would have shown her!

(PS--I have never thought that 28 is an old age for marriage. I know people that do, which is another story for another time.)

How Many Kids Do You Have

By Kaci Goodrich Uipi

I've been so busy this past month that I haven't had any time to write on my blog. I've also been so busy this past month that I have worried that maybe I wasn't thinking about Joshua enough. I even tricked myself into thinking that maybe I was done feeling sad about Joshua not being here. Oh, why do I always play that mean joke on myself? Even though I don't feel nearly as sad as I did six months ago, the sadness is still lingering on the surface just waiting to spill over.

I do much better with babies and pregnant women now. Nevertheless, I sill get nervous when I meet someone new for the first time and I just know the "how many kids do you have" question is going to arise at any moment. I honestly don't know if I will ever be able to feel okay answering that question.

We were in Utah over the holidays and it seemed like we were constantly running into people Salesi knew. If they didn't ask us "how many kids do you have", they would instead say, "you guys don't have kids yet?" If the latter of the 2 questions came up, I would automatically move my head back and forth and with a gloomy look in my eyes respond with, "No, not yet." I must have been too tired (and too cold) to actually take the time to tell the truth (especially to all the young Tongan couples who already had too many kids themselves to even count).

Around this same time last year I joked that we would have a 11-11-11 baby. And when that goal became unattainable, I then said that maybe we would have a 12-12-12 baby. Hmmmm, not sure about that one either now. Our bishop has told us to not rush into anything. (I will admit to liking his advice because it gives me more time for myself; On the other hand, however--I am turning 32 this year!) 

Gratitude

By Kaci Goodrich Uipi

So this month I have felt an overwhelming feeling of gratitude. Which, by the way, goes perfectly with this month being November and all. And as cheesy as it is (especially for me), I thought I would actually make a list of everything I'm thankful for when it comes to the loss of my son...

1. Friends who continually call to say they are thinking about us.
2. All the hundreds of friends (yes, there was a lot), and family that came to the funeral service.
3. The friend that sent me a plant on Joshua's birthday.
4. The friend that took me out to dinner for his 1 year angelversary.
5. The friend that texted me on his birthday.
6. The friends who called to ask if they could leave flowers on his grave for Memorial Day.
7. The friend who left something on his grave for his 1 year angelversary. (I still haven't gotten around to going there yet!)
8. Those friends that continue to talk about Joshua and never forget that he was a real person.
9. All of the dozens of pictures I have to look at of his short life.
10. A stake president who introduced us to other parents who had lost children immediately following the funeral.
11. A stake president who visited us in the hospital and gave me and Joshua a blessing.
12. A husband who continues to let me cry and deal with my loss as I see best.
13. All of those that gave us cards and flowers for his death and funeral.
14. The friend that donated all of the gorgeous flowers for his funeral service free of charge.
15. Those that let out-of-town family stay in their home for the funeral service.
16.Those who cooked a nice lunch for our friends and family after the burial.
17. Those that put flowers on his grave, just because.
18. My family who brought me flowers for his 1st birthday.
19. A bishop who visited us in the hospital.
20. All the friends who brought us food in the hospital.
21. The friends who sent us a card on his 1 year angelversary.
22. The friend who sent me an email on his 1 year angelversary.
23. The friend that took me out to dinner on his 1st birthday.
24. The friend who gave me a beautiful picture of Christ holding an infant, just because.
25.Those that have remained my friend even when I have offended them during my grieving process.
26. Those friends that came to visit us in the hospital.
27. Good hometeachers who came to sing to Joshua in the hospital.
28. The entire stake presidency who came to give us the sacrament in the hospital. (That was amazing.)
29. Everyone who has and is still praying for us.
30. All the hundreds (and even thousands, as my stake president quoted) people who fasted for Joshua the Sunday before he died.
31. All the people that have put Joshua's (and I'm sure mine also) name on the prayer roll.
32. My mother who wrote and published an obituary for Joshua.
33. All 3 sisters (2 from out of town) who traveled here for the funeral.
34. All those who gave us money for the funeral.
35. A friend who sewed Joshua a blanket for the hospital.
36. Friends who provided a breakfast for family on the morning of the funeral.
37. My mother who shopped for and bought Joshua's burial clothes.
38. Salesi's family who traveled from northern California and Utah to attend the funeral.
39. Salesi's family who brought Tongan blankets and tapa cloths to wrap around Joshua's coffin for burial.
40. Salesi's family who sang beautiful Tongan hymns as we burried Joshua.
41. All the men who actually took turns shoveling dirt onto Joshua's grave. (Again, another amazing experience to watch.)
42. Friends that made a beautiful display of Joshua's photos for the funeral service.
43. Friends who gave me books to read about grief and loss.
44. The short 6 days I did get to spend with Joshua at home.
45. All of the doctors and nurses who took care of us.
46. Everyone else that has done anything for my family or Joshua's behalf that I have forgotten to mention.

Alright, as you can see, it's pretty hard to be mad when I am able to count my blessings.

I Lost My Child Today

Exactly 1 year ago... just minutes before we unplugged all of the machines. Not exactly one of my brighter days.

I Lost My Child Today

I lost my child today.

People came to weep and cry,

As I just sat and stared dry eyed.

They struggled to find words to say,

To try and make the pain go away.

I walked the floor in disbelief,

I lost my child today

  

I lost my child last month.

Most of the people went away.

Some still call and some still stay.

I wait to wake up from this dream,

This can't be real--I want to scream.

Yet everything is locked inside,

God, help me, I want to cry.

I lost my child last month.

I lost my child last year.

Now people who had come, have gone.

I sit and struggle all day long,

To bear the pain so deep inside.

And now my friends just question, Why?

Why does this mother not move on?

Just sits and sings the same old song.

Good heavens, it has been so long.

I lost my child last year.

Time has not moved on for me.

The numbness it has disappeared.

My eyes have now cried many tears.

I see the look upon your face,

"She must move on and leave this place."

Yet I am trapped right here in time.

The songs the same, as is the rhyme,

I lost my child......Today.

-Netta Wilson

This Is What Joshua Is Doing

I thought I'd answer my own question, and tell you exactly what Joshua is doing...

He's very busy at appointments--teaching eager investigators. (He also has some that aren't quite so eager to learn, but hey--that's life.)

He occasionally spies on me. (I think most of the time he approves.)

He's meeting a lot of interesting people. Of course they're all good. Of course some of them are girls. (Now, I know you think I'm crazy to think that there's any chance he could possibly have any type of "feelings" for anybody... uhh hello--he's still a male.) 

He likes finding other people who were also hooked up to tons of tubes and ended up dying in a hospital. Ya know, they talk about how annoying it was to have all those tubes in them and especially the one down their throat, constantly gagging them. (But out of respect to their mothers, they don't laugh about it--even if now they think it's funny.)

Joshua always makes good decisions. He's one of those super-valiant-obedient-types. (I know what your'e thinking, but it's not always that simple--he still has to make decisions.) 

He's learning a lot about Tonga. (Hmm, I think he even goes to visit every so often.)

He runs into famous people all the time, but doesn't think anything of it. (I mean, he still acts impressed.)

The Spirit World

As I mentioned in my last post, I am very intrigued by the world in which is all around us but that we can't see... aka Joshua's home. I recently found this article about the spirit world that you can read here. Trust me, it's really good and will answer a lot of questions.   

What Do You Think Joshua Is Doing

By Kaci Goodrich Uipi

Sometimes while I'm lying in bed at night, waiting to fall asleep, I'll ask Salesi, "What do you think Joshua is doing right now?" He then responds with the same answer every time, "He's sleeping of course." Then I always go off about how he can't be sleeping because he doesn't get tired because he doesn't have a body and who knows if there's even a such thing as light and dark where he is!

That's the difference between my husband and me: I like to think about the world in which we can't see, and he likes to think that we don't need to think about it at all.

For example, did Joshua automatically become a missionary as soon as he died? He didn't live long enough to learn about the gospel here on Earth, so will he first have to go to a training center? Or since he died before the age of accountability, will he automattically remember the things he learned before this Earthly Life and immediately agree with all of Christ's teachings?

You see, I ponder this type of stuff for a couple of different reasons: (1) because Joshua is my son, and I like to know what he's doing; and (2) because I always wonder what happens to the families that die (especially those  who leave this Earth together) who have never heard of or accepted the gospel of Jesus Christ while here on Earth. Will their kids immediately be accepting of it and then preach it to their parents, even though none of them knew about it or studied it while living? It's just an interesting concept that children who came from a non-gospel home would all of a sudden be telling their parents all about it and the need to be baptized as soon as they enter the Spirit World, don't you think?

To me, I love studying the subject of life after death. It's just so fascinating. For those of you who are not familiar with the concept, here is a discussion from Brent Top who is an author on the subject. I have a couple of his CD's and he is definitely an expert regarding this sometimes confusing topic. 

How To Bring It Up

By Kaci Goodrich Uipi

I sometimes still have trouble letting people know about Joshua. I want people to know about him and  I want them to know that he is a real person! I just sometimes get anxiety over the whole thing. 

Last Sunday we gave talks at church and I thought long and hard whether or not I should say something about Joshua. I recently brought him up in a Sunday School lesson I taught, so there was already a good handful of the adults that knew about him. I definitely didn't want people to think I'm ashamed of him, or fear talking about him, so I decided to go ahead and "introduce Joshua" to the entire congregation. 

I started my talk and said I was going to share a brief introduction to those that don't know us. I shared how Salesi and I met and then said, "And last year we were blessed with a beautiful baby boy named Joshua. Joshua, however, decided that he had better things to do and skipped out a little early on this life...So he is now in heaven waiting for us...But he is a part of our family, so I definitely don't want to leave him out of the story." (I also then said if there's anything else they want to know about us they can come up and ask.)

Right after I brought up Joshua, I felt like it put a slight damper on my talk. I mean, how else do you tell people that you have a son but that he already died? I know the rest of my talk was good and everyone said they felt the spirit very strong, so I guess I shouldn't worry about it. There was a couple of older women who came up to me afterwards to ask about Joshua, and one of them told me that her daughter died of SIDS when she was a baby and would be 26 in November. That is one of the reasons I like bringing him up. I like finding other people who have also lost children.

Later at home I asked Salesi what he thought about me telling people about Joshua. He said, "It was good but you stole my line". Okay, so I did steal his line... "Skipping out on Earth early... Having better things to do"... It makes something so dark seem like no big deal so I used it. (I didn't want to scare all the kids.)

What To Do When Someone You Love Has Lost A Child

By Kaci Goodrich Uipi

This is a post I've been wanting to write for a long time. Since I am quickly approaching the 1 year-mark, I feel like I know just enough about this subject.

Yes, we are all unique individuals, and we might prefer different things, but most of these tips I find to be universal among the grieving mothers. (Or--"BLMs" as I finally found out we are called!)

1. Give a gift. Give SOMETHING. Flowers or a card at the very least. This lets her know that you at least know about the loss and are thinking about her. I LOVED all of the sympathy cards I received. I displayed them like trophies. I didn't get enough! If you CAN--give money! Yes, we really appreciate money because funeral costs are expensive! (Remember--no one plans to bury their baby. Parents--yes. But your child--not exactly.)

2. Try to visit as much as possible AFTER the funeral. Call ahead and ask if you can stop by, especially if it's BEFORE the funeral services. Why? Because the days leading up to the funeral are BUSY! I had clothes to shop for, a plot to pick out, arrangements that had to be made for out-of-towners and so on. I really didn't have time to "visit" with people. I really appreciated a friend who called me each day leading up to the funeral and said, "What can I do for you today?" During that time, it was so much more helpful than sitting on my couch for 2 hours. I appreciated people wanting to stop by, but I really wish they came AFTER the funeral. That's when things really sunk in, and that's when I actually had the time.

3. We need to be PAMPERED. Yes. Anything. We've just experienced something traumatic and it's VERY EXHAUSTING! A friend gave me and Salesi a gift card to a nice restaurant. It was perfect--especially because we had been living in a hospital for 3 weeks. If you don't want to spend money, then offer to watch her other kids so she can take a nap. Come over and give her a massage, or clean her toilet. The best advice I got from an experienced griever during this time was: "Be good to yourself. Go shopping and buy a new outfit! Go out to eat!"

3. Do NOT tell her HOW to grieve. Everyone grieves differently. Unless she is physically hurting herself or others, don't tell her how to do it. When she is mad--let her be mad. When she is sad--let her be sad. When she is bitter--let her be bitter. When she wants to cry--let her cry. When she doesn't want to cry--don't make her cry. She needs to experience all of the different emotions that come with grief--but on HER time, not yours. Also, don't tell her what she can and can't handle doing. I didn't like people telling me to "stay busy". In the beginning, I didn't want to "stay busy"! I wanted to lie around, cry, and stare at pictures of Joshua all day long. (And recently, some people assumed I couldn't do certain tasks because of the anniversary of Joshua's birthday approaching.) Sometimes distractions are good; Other times we want to be alone--but let us decide.

4. Do NOT use cliches. Sorry. As good as they sound, we just don't want to hear them. For every cliche you say, we will think of a good comeback. We might not say it out loud, but we are thinking it. For example, don't ever say things like, "You will see your son again... He was too pure for this Earth!" Having a strong testimony of God's eternal plan does NOT take away the pain of losing a child! We would all go mad if we didn't think we should be upset over our loss just because we know we will see our loved one again. Avoid ALL cliches, especially, "I understand how you feel". Instead, simply say, "I'm so sorry". And that's all you have to say!

5. Be sensitive. Everyone is different. She might want visitors; Or she might not. She might want to talk all about it including lots of details; Or she might not. Whatever you do--be sensitive. Don't be pushy! If you have a gift, then call ahead, and if she doesn't answer then assume she would prefer you to leave it at her doorstep. If she has lost an infant don't come over to her house with your new baby. (If your friend lost her job, you wouldn't want to offend her by talking about the great new job you just got.) Don't expect her to show up at your baby shower, or any type of social events. (But still invite her to let her decide.) Be sensitive to her feelings and never assume if and when she has "moved on".

6. Be there! Tell her that you are there if she ever wants to talk about it. (And then actually BE THERE, by continually checking up on her with phone calls, emails etc.) If you are there, she will talk about it when the time is right. Remember--grieving the loss of a child is a process. When the funeral is over, and cards stop coming, and dinners stop coming, THEN she will need somebody. So, if you want to be that somebody, then BE THERE.

Good Bye Facebook

By Kaci Goodrich Uipi

Good bye Facebook. So long. It was nice knowing you but it's time to go our separate ways. We had our ups and downs, and I tried to work things out--I really did--but I just don't need you around anymore.

I thought you were important--always keeping me up to date on all the little details--but now all those details either make me want to puke inside or throw something at you. So instead of getting violent, I've decided to take the higher road and end our 5 year relationship.  

I know, I know. I know this is going to be hard for you--hard because I won't be there to oooh and awe over all those pictures you put in front of my face right when I sign on...and even more hard when I'm not there every 5 minutes to like your status update.

You probably think I'm crazy because of everything I'm going to miss...I won't know about your 3rd ultrasound; I won't be there when your baby sneezes for the first time; I won't know when you are 10 minutes pregnant; I won't know when you fall and crack your toenail; And I won't know when your toddler has gone potty in the toilet for the 5th time in 1 day.

I didn't think I could live without you either--but not having you around is one of the best decisions I've ever made. So adios Facebook. Espero estar lejos de ti para siempre!

This Is Why I Have A Blog

By Kaci Goodrich Uipi

As I read blogs from different "Angel Moms", I don't see them writing so much about the pain, the bitterness, the depression, the anger, the jealousy, and so on. However, when I log onto a private blog to which I belong with these other moms, I do sometimes find them sharing their "true feelings". Is it so bad that I share my "true feelings" on my public blog? That is the reason I have a blog.

I'm not good with showing my feelings. I'm especially not good with speaking. If I have to give a talk (a speech would be the better word), I spend hours and hours writing it, and re-writing it, and then I spend several more hours actually reading it out loud. (I'm not exaggerating either--I just gave a talk 3 days ago, so I know.) I guess I don't want people to think that I'm just "hiding behind my computer screen". My blog is my way to express myself. Before I had this blog, I really felt bottled up inside. 

Now, I know that not everyone is going to agree with me. Usually, it's those that have not lost children who don't agree with my feelings. Or, maybe you people out there that seem to agree with me are just "being nice" as my husband always tells me. (Yes, my husband thinks I need to burn this blog.) If that is the case, then please don't "be nice" anymore.

The real reason I have this blog is to work through my grief. Now, I have plenty of other problems that I also deal with that I don't share on this blog. I am also perfectly aware that there are many other struggling people in this universe. However, this blog is purposely to share feelings about MY LOSS.

For example...

Lately, I've been thinking that I should be "moving on". I mean, it has been 11 months, ya know? Well too bad you can't put a timeline on grieving the loss of a child. Sorry. I will never get over it. I will always be talking about it. It will always hurt me. The pain will lessen (as it has), but as of now, I'm definitely still in a depression/reflection/loneliness stage of grief. (For a good reference: go here.)

I really wish I could move on. Honestly. I do.

Shortly after Joshua died, I mentioned to a friend that seeing other babies made me angry inside. She responded, "I sure hope you can get over that soon."

I sure hope I can "get over it" soon too. But until then, I will just keep writing about it.    

What Is Wrong With You People

By Kaci Goodrich Uipi

Sometimes I feel like maybe I'm a little too harsh on my blog. After all, I have mentioned that there are some ugly babies out there, and that pregnant women are annoying to me. If any of you are offended by this, I will tell you that I, myself was a really ugly baby. (Hey, I'm still not that great-looking.) And as far as all you pregnant people go--well, you know who you are, and YES--you can be annoying! (Yeah, maybe I was one of them, but now I know better. Way better.)

So if you haven't gasped enough while reading my blog lately, I will make you gasp again. I will ask a question, but this time directly to my family--WHAT IS WRONG WITH YOU PEOPLE??

How come none of my family will be tested for CGD? Is it because they think that "I'm the only one who has bad things happen to them?" Or is it because they really think they aren't carriers? Or is it because they are all in denial? Then there's my mom who completely, utterly, absolutely, REFUSES to be tested. Wow, Mom, how bad could it be? If you knew you were a carrier, would you feel guilty for Joshua's death? If my mom was tested and was negative, then all of my sisters wouldn't have to waste their time being tested.

Okay, so 1 of my 3 sisters did get the test done... but ONLY because she was pregnant with a boy. When the results came back, she acted like it wasn't a big deal because, "of course I wouldn't be a carrier, I mean, bad stuff only happens to Kaci and Salesi, one of MY kid's isn't going to die..." (Okay, so my sister didn't actually say those words, but that's how it felt to me, anyway.)

Of course no one thinks bad stuff is going to happen to them. No one thinks they could possibly lose one of their kids. That kind of stuff only happens to other people, right?

Okay, so maybe you are thinking I should tell this to my family in person. Oh, I have. Many times. I try to convince them that having a CGD baby is serious; That it's a kind of lifestyle that they might not want to have; That just because they know before the baby is born (unlike me), does not mean the baby won't have problems it's whole life, and certainly doesn't mean the child will live a long life. 

Then again, why be tested at all when your child could be born with so many other problems, right? Well, wouldn't you like to have one less problem to deal with? (Especially a very serious, chronic disease that could be fatal.)

Then there's the "percentage issue". Are you going to tell me to "go ahead and take the risk, because there's still a 75% chance my baby won't have it!" What about the other 25% chance that my girl could be a carrier and have to face what I'm facing when she is ready to have kids? 

The bottom line is this: Numbers don't mean much to me. Joshua was born with something that only 1 in a million people have. Why wouldn't it happen again?

Ten Ten Ten

Happy 1st birthday to my Joshua! Yeah, I know what you're thinking... "MAN he's a GOOD LOOKIN' (7 day old) BABY!" I'm sure all the spirit girls are going wild for him in the Spirit World even as we speak. But I just have ONE thing to say to all of them... "Don't even THINK about laying one spirit hand on MY son until I get to know you first. Okay!?"

I'm just too tired and sick to cry today. Late last night I started looking through the hundreds of pictures we took of him, but after a few seconds I stopped and turned off the computer. I started to cry. I wanted to cry. I couldn't help but cry. However, right now I just don't have enough energy to waste it on crying. I will have to put off my sobbing for yet another day. (And besides, I really want to use any endurance I have to make a birthday cake instead.)

Living The Life In Vegas

WARNING: This post contains an overload of photos. Yup. If you were wondering what I really looked like, then now you will know.

For Joshua's 1st birthday, we decided to celebrate it in Las Vegas. I hadn't been back since I lived there, which has been almost 10 years! And boy, has it changed! New hotels crowding the streets, malls on every corner, and naked pictures every where you look. Oh wait, I guess some things are still the same.

I wasn't sure what Salesi would think of Las Vegas. For those of you that don't know him, let's just say that he's the kind of guy that likes to read his scriptures for 10 hours a day. Okay, maybe not that long, but seriously--he will only let me watch PG rated movies. Seriously.

So as far as Salesi goes, I'm not sure if he will be heading back to Sin City anytime soon. As for me, on the other hand--I love the great variety of restaurants and shops, but yeah, there really was a lot of yucky pictures everywhere you looked.

Okay. Now on to the exciting stuff. I'm sure you are all dying to know everything we did while we were there. So, here ya go...

We ate dinner at Thomas Keller's "Bouchon".

(Sorry, really bad picture... I didn't take it!) I actually wrote a really long critique of the restaurant, but then deleted it after realizing that most of you probably won't care. (Shame on you non-foodies, or non-"food snobs" as my sisters call me it.)

We took pictures in front of giant corn ears.

We ate overpriced Chinese food.

We took pictures in front of the Eiffel Tower. (Aka our hotel.)

We took more pictures in front of the Eiffel Tower.

We watched dancing fountains.

We ate french pastries.

We ate some more french pastries. (It was kind of a daily ritual.)

We learned French.

We saw The Lion King.

We found a H & M with more manikins in the store than real people.

Salesi thought about getting some new style.

Salesi marched with protesters.

We stayed in a red room for only 46 bucks a night! (Thank you Priceline, and an even greater thank you to the lady at the front desk who upgraded our room for free!)

We ate some more over-priced food. (Sorry, too tired for hair and makeup.)

We took pictures of ceilings.

We ate at a lousy all-you-can-eat ("french") buffet. (Don't go there! The Bellagio's has got to be better!)

We took more pictures in front of the Eiffel Tower.

We listened to talking trees.

And we helped this old man sweep the Parisian streets.

Besides being extra tired and achy, and having an emotional break down our last night (which now I know is from having battled Valley Fever the past 3 weeks), all in all it was a good trip, and I'm glad I went.

(Now I just have to figure out what I'm actually going to do tomorrow, on Joshua's REAL birthday...)

God Knew What He Was Doing

By Kaci Goodrich Uipi

God must of known what he was doing when he created grief. Well duh. He is God.

There must be divine purpose in the details that make up what we refer to as "grief". For example, there's plenty of good reasons why at first, immediately following the death of your loved one, you usually experience shock or numbness. This is so you can actually make it through the funeral and burial services without being an absolute crazy person. I now sometimes go to the cemetery thinking, "My baby's down there! Someone help me dig him out!"

I remember lying in bed the night after Joshua died, feeling like I should be crying. In truth, I wanted to be crying, but it just wasn't coming out. I told Salesi that I was "upset" and he responded, "What did I do!?" I told him, "No, not at you! I want to cry, but it just won't come out!"

It's now been almost 1 year. And I still can't make it come out when I want it to. I can sometimes try to suppress it. (Sometimes.) However, when it needs to come out--it does, and it will.

Next week is Joshua's Birthday.  I'm not sure what to think of all this.  I feel like I should be crying, but again--it's not coming out. Actually, we are going to Las Vegas to celebrate. So, it's probably better that I don't start crying while I'm livin' it up in Sin City a beautiful city filled with tons of good church members and a gorgeous temple.

If I do start crying on our trip, however, it will most likely be from watching an emotionally stirring performance of the Lion King. (Oh man, it's going to remind me of Joshua isn't it?)

What To Do

By Kaci Goodrich Uipi

So many choices...

We went and saw the IVF doctor again. I think we might go through with it... Or at least continue down this path until something stops us. There is still one big decision to make regarding IVF: To have twins, or not to have twins?

Now, I know there are no guarantees in life. Just because the doctor transfers 2 embryos, doesn't mean both will survive. Just because the doctor transfers only 1 embryo doesn't mean it won't split into 2. And of course, just because the doctor strategically places any embryos at all doesn't mean any of them will continue to grow into a healthy, normal baby.

However, it's up to me to give the number. 1 or 2? There seems to be too many risks involved with carrying twins that I ask myself, "Why in the world would I purposely put my babies in jeopardy?" But then there's the thought of only transferring 1 and it NOT surviving and thinking, "What an idiot! Why didn't we just go for 2 the first time around, and not have to worry about doing the whole thing over again!?" Of course, then there's the idea of having 2 babies NOW and not have to do the whole thing over again in a couple of years anyway.

Supposedly it's more money to have twins because you have to have 2 of everything at the SAME TIME: 2 cribs, 2 car seats, 2 carriers, 2 swings, etc.

There's so many things to think about, and I really don't know what to do. They say that the IVF process can make you mad, angry, and crazy. Well what does it do to people who are already crazy? Could I handle going through the process twice? Or the bigger question is: Could I handle being up all night with 2 babies crying at the exact same time??

On a different subject...What if we forgot the whole IVF thing and went with an egg donor instead?

Now THAT'S a question. What do you think?

I Write The Truth Whether You Like It Or Not

By Kaci Goodrich Uipi

Some people might think I'm just a bitter brat. I beg to differ. I have many days when I count my blessings and am in such awe of what God has given me including talents, friendships, financial well being, physical health, a nice home to live in, a good husband, and many more.  But when life is great, I don't always feel like writing. When life is bad, writing is my therapy and I guess deep down inside, I do it because I long for understanding. Yup, I said it. I long to be loved and understood.

As Joshua's birth date and death date soon approach in the next couple of months, I feel the need to look back and review everything that has happened this past year. It's not a year I would wish upon anyone. Nonetheless, I feel proud of my accomplishments and growth that has taken place. Two Important things I've learned is: "There is no right way to grieve" and "I will never completely get over my loss". With these statements in mind, I feel like I've done pretty good in handling the card that was dealt to me on November 9th of last year.

I might not always write the things people would wish I would write. I might not have as many followers as other blogs because I might not be viewed as an "inspirational" or "motivational person". That's okay. I want people out there to know that losing a baby isn't fun. In very dark moments (and I feel like I can personally say I know what a "dark moment" is), the pain can cut very deep, and feel like it might never go away. So I blog to bluntly let people know that, "No. I'm not OK with my son's death."

I want people to know that I'm a real person with real feelings of anger, sadness, helplessness, frustration, and jealousy. However, I also want people to know that I am striving daily to endure my challenges and struggles, having hope that one day all things will be made right through the atonement of Jesus Christ, and that I WILL see my son again.

I sometimes hold it half a sin; To put in words the grief I feel; For words, like nature, half reveal; And half conceal the Soul within. -Alfred Tennyson

Why Is My Life So Awkward

By Kaci Goodrich Uipi

Why is my life so awkward? If I don't tell people about Joshua, it's awkward. If I do tell people about Joshua, it's even more awkward. Is it me? Or is it them?

My visiting teacher came over on Sunday, and I knew she would ask about Joshua. 1--because I have two framed pictures of him in my living room, one of which is of Salesi and I holding him with my hospital bands still on. And 2--because my visiting teacher likes to talk and ask a lot of questions.

I had thought about putting the pictures away before she arrived (or at least the one of us as a family), but I decided instead, that I would act like it was no big deal if she were to ask me who the baby was. Of course we all know that it isn't just "no big deal".

To make a long story short...after I nervously asked all the questions for a good 15 minutes (while she continued to stare at the picture of Joshua across the room), she then started asking me questions about my wedding. At this point I knew she was staling. And then it came--the dreaded question that I knew was coming--"May I ask you who the baby is??" She said quietly with a hesitant look on her face. "OH, that's our baby. That's Joshua. He was born on 10-10-10 and passed away on November 9th. He'd be 1 in October," I said matter-of-factly like it wasn't a big deal. "Well he's very cute," she said. "Thanks," I responded immediately.

Then, it happened--that super quiet moment where you start twiddling your thumbs hoping that a big plane will crash down outside your apartment to take away the silence and awkwardness of it all.

Instead of the big plane I was hoping for, I turned my head to look way over at the microwave clock and said, "Oh woa! We gotta get going (to church)!"

And that was that.

Is it me or is it them? I just don't feel like explaining the whole story to everyone on the planet. Only because we recently moved, it now feels like I'm keeping a big secret from everyone. People don't see us with kids at church, so they have no reason to think that we have any at all. I guess this is how my life is going to be from now on, so I better learn to deal with it.

A New Place

By Kaci Goodrich Uipi

We recently moved to a new town. As we packed up the final boxes at our old place, I became a little sad thinking that we would never be back there. It was the one and only home in which we had Joshua. Even though he never actually slept in the room I decorated for him (all with custom made pillows, crib bumper, bed skirt, and the cutest artwork you've ever seen), it's still sad that we will never again be inside of the only house that smelled and sounded like Joshua. Inside of that house contain the only (good) memories I have of him. (Other than at the pediatrician's office and the hospital--but I don't like to remember those so much.)

When I shared my feelings with Salesi, he said, "That's okay. We'll buy it when the owners foreclose." Awe...gotta love him. And even more--gotta love the fact that he never reads my blog so I can write about him!

Too Big Of Deal

By Kaci Goodrich Uipi

Maybe this death thing is highly overrated. Maybe I've been making too big of deal over it. I mean, why should it bother me so much that my son is in a beautiful, peaceful and joyful paradise, free from pain and woes? Why should his passing cause so much sorrow to my soul and pain in my stomach?

Everyone has to die at some point or another--but for some reason, the actuality of this ordeal continues to create tears.

I smile when I see his picture--he was such a beautiful baby. I even express signs of laughter when I reminisce over his personality. Nonetheless, if I ponder on these happy recollections a little too long--the story evolves--and has the same, unfortunate ending.

The conclusion is simple: It's sad. Joshua's death is a sad, tragic story. It might not be so heartbreaking to others, or even understood in the smallest degree--but it's not something easily imaginable--until that is--it happens to you.

Misconception of the ungrieving world: Okay, so I'm not saying that it isn't getting easier for me. However--there will always be sad moments, shedding of tears, yada yada... Let's face it, though--as of now, my story doesn't exactly have a happy ending.

Gag Me With A Spoon

By Kaci Goodrich Uipi

I don't have many friends. Shocking, right? One of the toughest things for me to do right now is to be happy for somebody else. I mean, my life sucks, so why shouldn't everyone else's?

I get on Facebook and I see pictures of people's sewing projects. Yuck. Gag me with a spoon. I see conversations about activities to which I'm not invited. Gross. And here comes the worse one of all--baby pictures. Disgusting. I mean, I know I posted baby pictures of Joshua on FB, but that was after he passed away. Yes, I'm sure that I myself, will want to show the world pictures of my next adorable baby, but for now, it would be nice if people kept their happy lives to themselves.

Call me what you like--grumpy, grouchy or the grinch. Actually--it's a Ms. Grinch to you.

Lessons Learned

By Kaci Goodrich Uipi

Treat others with kindness. Don't judge. Don't take life for granted. Remember that everyone you meet is facing a hard battle. Love everyone. Remember that life is short. Put your faith in God. Don't ever give up. Put others first. Be patient. Don't lose sight of what is most important.

These are just a few of life's simple lessons that are learned when a loved one dies. But there's got to be something more. Something I'm missing. Or is this it?

You know when you have those a-ha moments? When those moments come to me, I'm usually meditating, such as writing in my journal, praying, or sitting quietly. I think, "wow, this is some good stuff that I don't want to forget!" But as I start jotting it down, I quickly realize how simple and everyday that wisdom really is.

I've come to the conclusion that it's really the Holy Ghost who is teaching. And in that particular moment, is able to strongly penetrate my soul in a way that allows my mind and heart to know and remember what my spirit has known all along.

Death

By Kaci Goodrich Uipi

Death is an interesting thing. For the most part--it scares me. I will always wonder in which way I will die--will it be painful, or will it be peaceful? I will hope, and pray, that it will be as calm as possible. However, I can't take away the agency of another person, nor can I control Mother Nature--and all that she has to offer.

The process of the spirit leaving the physical body is another mystery to me. When exactly it happens, and how, I will probably never know in this life, well--until it happens to me that is.

Watching someone else die is something that most people don't get to experience, and I know I should be grateful for that blessing. Joshua died in a peaceful manner--as peaceful as it could have been, I suppose.

I sometimes imagine that his spirit might have left his little body much sooner than I think it did, or at least before the doctor actually pronounced him "dead". The night before he died, there was a sign that kept appearing to me. I believe that it was telling me of the things to come--or who knows--maybe of the things that had already come to pass.

This can all be summed up in one word: Faith. Faith in God and in his plan. Faith to believe that life does not end in the grave. Faith to endure--and faith to believe that we will see all those who have passed on again some day.

All Things Joshua

This past weekend, we attended the 2011 National Immune Deficiency Foundation Conference. It was IDF's 30th anniversary, and the conference just happened to be here--in Phoenix!

For the very first time, we finally were able to meet other CGD families who traveled from all around the country to be here. Remember--CGD is very rare. Only about 40 people are born with it each year.

We also had the amazing opportunity of meeting 3 doctors who are experts in the subject of CGD, and spend their entire medical career researching and helping families with this unusual disease. One of which, Dr. Stephen Holland, is now Salesi's new hero!

IDF's motto is: "When you hear hoof beats, think zebras, not horses". In medical school, many doctors learn the saying, "when you hear hoof beats, think horses, not zebras" and are taught to focus on the likeliest possibilities when making a diagnosis, not the unusual ones. However, sometimes physicians need to look for a zebra. People with primary immunodeficiency diseases are the zebras of the medical world.

So, if you happen to see us dressed up in zebra wear, a little more than the usual, you will now know why!