Tuesday, July 12, 2011

Milk Free

Recently we have become a milk free household. The road to finding out Henry was lactose intolerant was a long one. I'll spare everyone the gross details but we figured out pretty quickly that whenever henry had dairy he had blood in his stools.

Henry nursed until he was 18 months old and because he refused to drink milk or cheese I didn't think anything of it because he was getting enough calcium and vitamin D from nursing. However as soon as he stopped nursing his blood work showed a huge vitamin D deficiency. Not only was Henry not eating any dairy but he was starting to refuse to eat meat as well. So we put Henry on vitamin d supplements and really tried to push the dairy on him and well mayhem arose.

As a mom I just had this feeling and knew that dairy was the culprit so I took the milk and cheese out of his diet and made an appointment with the doctor. Henry was tested and although he didn't have a milk protein allergy the doctor is 99% sure he is lactose intolerant. I was glad to finally have a diagnosis but it brought up a whole slew of issues. Now that I knew he was lactose intolerant I had to figure out just how sensitive he was to dairy.

Most lactose intolerant children just have to avoid dairy like mik, cheese and ice cream. They can have foods like hard cheese and yogurt though. However with Henry once the main culprits were out of his diet I found he would still have 'episodes'. We had a cookout and henry ate a hotdog on a bun. The next day was just awful and I couldn't figure out why. My friend did some googling and then I found out a slew of products contain lactose in order to help perserve them better. Bread, hotdogs, luncheon meats, shortening, salad dressings along with lots of processed foods.

It has become quite a frustrating task. Although once Henry has had a true non-dairy day I have realized what his diapers should look like. I do feel lucky that he is not deathly allergic and the most severe we have to deal with is gas, diaper rash and a very sore bottom.

The most difficult thing now is that everything should really be made from scratch. I've been in the kitchen experimenting and have made dairy free bread as well as muffins. I think I have checked out just about every vegan and non dairy cook book available at the Library. The good news is I have lots more recipes just waiting to be shared here. The best part being that they are all dairy free and Henry approved!

Friday, July 8, 2011

Curry Rice

I consider Henry a fairly adventurous eater. He'll typically try anything and has always been one of those kids who likes 'non' kids food. Some of his favorites being avocados and guacamole, hummus, beans, fish tacos, cobb salad and now curry rice. My mother in law introduced me to a curry rice that you can get in the freezer section at trader joes. Henry loved it so much that I figured I would save some money and just make my own version at home.

This is one of those recipes that just worked from the getgo. I do a lot of experimenting in our kitchen and often I have to tweak something after the first try or my husband will kindly ask me to never make a dish again (like my disastrous greek orzo pasta salad). I have to say I am not a curry fan at all but this rice is off the charts delicious. It's also super easy and fast to make.

Here are the ingredients:

3 cups Cooked Jasmine Rice
1 cup frozen Peas
1 cup frozen Corn
1/2 cup raisens
1/2 cup Yellow Curry Sauce (I got mine from Trader Joe's)

The Directions:

1. Follow the directions on your package of rice to allow for 3 full cups of cooked rice. (I buy my rice in bulk so I simply measured out the amount of rice and water needed to make 3 cups. I boiled the water and then added in the rice and simmered for 12 minutes.)
2. Once the rice is done cooking remove the pot from the heat and set the rice aside.
3. Place an empty pan on the stove over medium heat. Add 1 TBS of oil.
4. When the oil is heated through add the frozen peas and frozen corn to the pan.
5. Sauté the pees and corn together for about 5 minutes until they are cooked through.
6. Next add in the raisens, curry and rice to the veggies.
7. Thoroughly mix everything together and let it all cook for another 5 minutes or so to make sure everything is heated through.
7. Serve and enjoy!!

I absolutely love this super simple rice dish and trust me it is also super yummy as well. I served mine alongside a roaseted chicken. Here is what the rice looks like when its done:

Wednesday, July 6, 2011

A Baking Adventure


As Henry gets older I am really starting to enjoy all the things we are able to do together now. I love to bake and I'm hoping Henry will also share that love with me. Henry has always been fascinated with me cooking in the kitchen. When he was an infant I would sit him in his high chair and do a cooking show for him each night as I made dinner. Now that he is almost two I thought it was time for me to start letting him help out a little in kitchen and get involved. Up until now though I hadn't found a recipe or food that I thought was a good introduction.

I had picked up some vegan cookbooks at our weekly trip to the library and saw a banana muffin recipe that sounded delicious. We found out Henry is lactose intolerant (That blog post is coming soon) so in an effort to broaden my culinary skills I figure vegan cookbooks were the best route to go since I know there will be no dairy in those recipes.

While I was thumbing through the cookbook it dawned on me that a vegan muffin or cookie wouldn't have any eggs in it either thus making it the perfect batter for Henry to play with. Henry had so much fun pouring all the ingredients in and mixing it all together. I enjoyed not having to worry about him tasting the batter or ingredients.

I wanted to amp up the banana muffins with some blueberries and well lets just say it all went downhill from there. Henry didn't agree with me that blueberries would taste oh so good in the muffins and stirring turned into flinging which ended up with a little time out session. Meltdown 2 happened when the stirring was over. Apparantly pouring batter into muffin pans is traumatic for an almost two year old. So I popped the muffins into the oven and attempted to rectify the toddler situation.

Over an hour later Henry was happy and fine but my poor muffins were not. I had completely forgotten to set the timer and then just flat out forgot I put muffins in the oven. I actual thought my neighbor was cooking something on the grill because there was this faint burning smell and it was then that I realized what I had done or forgotten to do.

So unfortunately I can't share my Banana Blueberry Muffin Recipe because I never got to try them. However I can share some pictures of Henry's first time baking. I'm hoping to retry this muffin recipe soon and I'll be sure to share the recipe and finished product with all of you.



Wednesday, June 29, 2011

4.5 months

It's been 4 and a half months since I've last written a blog post. Ohh my poor and neglected blog. I have to tell the truth (don't I always). I was so honest on my last blog post entitled Hope. Bare bones honest. I dug deep into a part of me that was dark and hurt. The response I got from friends, family and strangers was over whelming. Yet as much as I tried to appreciate all the kind words, phone calls and e-mails I couldn't help but want to scream at the top of my lungs 'I'm OK'.

This blog is therapeutic for me. It's a chance for me to share the good, bad and ugly that comes along with having a child with ARPKD. I get to share my love of cooking and all the daily little things that weave themselves in and out of this disease. I promise I am a happy person. I cherish every moment I have with my son and regardless of my doubts am committed to having a positive outlook for my sons life. With that being said any person who has a child with a terminal disease understands those moments where you feel as if the walls are closing in on you. Where your mind goes towards that darkness and for that moment you fall apart.

I take those moments and I share them. I blog whats on my mind and I feel better. I haven't blogged whats on my mind in a long time and boy have I had a million moments and things I've wanted to share. Yet I've been afraid. Afraid of putting everything out into the online world and having people judge me. It's scary being so honest but I truly believe that by sharing my life, my joys and my heartaches I am giving some mom, somewhere the comfort of knowing they're not in this alone.

So if you've just stumbled upon this blog for the first time, have known me my whole life or are somewhere across the world just looking for answers I thank you. I thank you for reading my blog, for keeping an open mind and for understanding. This disease isn't easy, it isn't fair and it doesn't make sense but I'm going to keep blogging regardless of how scary it may be.

Wednesday, February 16, 2011


I've spent the past two weeks thinking of how to write this post. Going back and forth on what to say. Each time I come up with a million things I want to say but then they just don't feel right.

I started this blog to give people hope, to put my story out there in hopes that parents with children who have arpkd somehow find there way here and maybe find some peace of mind, some inspiration, some hope, some acceptance and validation. I occasionally am contacted by people who have been affected by this disease. Most recently I was contacted by a mom who had high hopes for her baby, who was diagnosed in utero with arpkd. I shared my experience and passed on my hopes that the doctors were right and the baby would make it. The baby did not make it and I have no words to describe how that made me feel the moment I found out.

She is not the first person to contact me who has lost a child to arpkd but with each e-mail and each devastation I find myself closer and closer to questioning my faith and hope. I can not help but feel guilty for having a child who is doing so well. I write so many posts gloating about him and his success but am I giving people false hope? Am I giving myself false hope?

When I hold Henry close to me my heart just aches for those parents who will never experience that. Its just not fair. My whole life is based around the fact that I believe everything happens for a reason but I can not accept the death of a newborn baby. There is no reason for that.

And so I am torn. How can I make a post about a blueberry smoothie and henry's latest funny thing when the dark side of arpkd rears its ugly head over and over again. Unfortunately this disease is full of highs and lows and I try as hard as I can to live in the moment but every once and a while I get hit with something that shakes my core and I retreat until I can find the words to heal.

So I decided to write a letter to hope.

Dear Hope,
Webster's dictionary names you a verb and states quite simply that you mean trust. Until recently I clung to you but I'm not sure I trust you anymore. Further more I refuse to put your name and trust in the same sentence ever again. You are the reason I get up in the morning, in hopes for a brighter day. You are the reason I started this blog, in hopes for a brighter future. You are the reason I don't give up on my son, in hopes for a cure.

However with the recent events you have not only let me down but a few moms and dads in particularly who deserved much better than you. You have filled me with all the hopes of tomorrow and I now feel guilty inside because you did not do the same for them.

I used to put you on a pedestal with faith but since faith and I aren't on speaking terms at the moment I'm unfortunately left with despair which ironically means to lose all hope.

So if you ever find your way back to me again all I ask is that you have the strength to face the doubt and the questions head on. And as much as I hate you right now for reducing me to tears, I know that when I see that glimmer of you again I'll smile because as Robert Brault said, "It is the first purpose of hope to make hopelessness bearable."

Tuesday, February 1, 2011

Miracles Do Happen

Back in September Henry had an infant PFT (Pulmonary Function Test). It is a non invasive test where he is orally sedated and a vest is placed on him to control his breathing. His lung capacity and function is then monitored, recorded and eventually interpreted. We had the test done because the results of the test would give us an idea of where Henry was and if there were any issues we needed to worry about.

Last year Henry came down with a cold and ended up in the hospital. He was having a really hard time breathing and couldn't keep his oxygen levels up. He was put on a nebulizer and given steroids. During the winter months this is a common thing for all babies and children so we truly weren't sure if he was acting normally or if this was going to be an underlying issue for us every time he got sick.

I finally was able to get a hold of Henry's pulmonary doctor yesterday to get his PFT results. (The fact that I had to wait 4 months is annoying but at this point the results were so amazing I really don't care). When the doctor called me he apologized because he thought he had already shared the results with me. He said, "I've been bragging about Henry to everyone". He then explained that Henry's results were amazing. He has better lung function then a normal person with fully developed lungs.

Say What?? Are you kidding me?? To put this in perspective when Henry was born we had a NICU nurse tell us that they had never seen a baby on ventilator settings as high as Henry. We were at a point where they had no more options and if his lungs didn't respond to the highest settings then there was nothing else they could do. He even had two holes (pneumothoraces) in his lungs due to the high ventilator settings.

So I am writing this post to say miracles do happen. Kids do beat the odds. No matter how bad it may seem it can get better. I have been to the darkest place and through Henry have seen the light. I feel blessed as a human being to be pushed emotionally, to be forced to look inward and search out the good, to learn faith and belief, to never give up.

The most important lesson I have learned on this journey is one that I can not even put into words. When Henry was born I was humbled, I learned that there are forces greater then the human being out there. I learned that life is very fragile. I was instantly changed as a person. Life became more about the connections, about living, and above all about loving. I learned to be selfless and through that have received more from life then I ever imagined. I am thankfully for the child I have and the journey I have gone on with him. He truly is my little miracle.

"Every moment of light and dark is a miracle."
-Walt Whitman

Sunday, January 23, 2011

Monkey Stuffed French Toast

I decided to experiment in the kitchen and came up with this Monkey Stuffed French Toast. No monkeys were harmed in the making of this recipe. However my little monkey did enjoy this yummy breakfast. Here are the ingredients:

I found this great bread at Trader Joe's and what I love about it is that it is smaller than regular bread and the perfect size for a Henry sandwich. The peanut butter I use is unsweetened with no salt and the butter is unsalted as well.

I started by taking 1/4 cup of peanut butter and 1/2 a banana and mashing them together in a bowl.

Then I spread 1/3 of the mixture on a piece of bread.

Then made a little peanut butter and banana sandwich.

In a separate bowl I combined 2 eggs, a dash of cinnamon and a capful of vanilla extract. Then scrambled it all together.

Now it was time for my sandwich to take a little swim.

I heated up the pan to low and added a pat of unsalted butter. Since this is mini bread I was able to do 2 sandwiches at once and cooked them until golden brown on one side, flipped them over and then cooked that side until it was golden brown as well.

Of course I had to serve this on Henry's monkey plate. I sliced up the left over banana on the side and drizzled it with Honey.

Then a close up of this deliciousness. What I loved the most was that Henry could eat this like a sandwich and unlike traditional french toast that has maple syrup all over it there was no sticky mess to clean up after.

This recipe made 3 mini sandwiches which would have been perfect for Chris, Henry and I. However chris was away so our 2 dogs Jax and Bella scoffed up the third one.

6 slices of small whole grain bread (4 large slices)
1/4 cup unsalted Peanut Butter
1 large Banana
2 Eggs
Dash Cinnamon
Capful of Vanilla Extract
Unsalted Butter
Honey (Optional)

1. Mix 1/2 the banana and 1/4 cup of peanut butter together in a bowl
2. Spread 3 slices of bread with the peanut butter and banana mixture.
3. Use the remaining 3 slices of bread to make 3 peanut butter banana sandwiches.
4. In a separate bowl combine 2 eggs, a dash of cinnamon and a capful of vanilla extract.
5. Dunk in sandwich into the egg mixture and coat both sides.
6. Heat a non stick skillet on medium low and put a pat of butter in the skillet
7. Place a sandwich in the skillet and cook one side till medium brown.
8. Flip the sandwich over and cook the other side to medium brown.
9. Use the remaining banana to garnish the plate.
10. Drizzle the sandwich with Honey (optional)
11. Enjoy

Saturday, January 22, 2011


Yes I'm going there. I'm talking about siblings. 2011 is about tackling things head on and well the prospect of Henry having a brother or sister is something thats been weighing on my mind for well over a year. So prepare yourself for a sneak peak into the craziness that floats around in my head when I think about siblings.

Fact 1: There is a 25% chance that we will have another child with ARPKD. That is if Chris and I actually carry the recessive gene. It cost thousands of dollars for the genetic testing (insurance won't cover it right now) and no matter what the outcome is it won't change Henry's diagnosis. So if we find out that we don't have the recessive gene than we can pro create worry free and that means Henry's ARPKD is a mutation that wasn't inherited. If we do have the gene well then we're back to the 25% chance. However regardless of the outcome even if Henry had a mutation whats to say we wouldn't have another child with it?

Fact 2: Approximately one third of infants with ARPKD don't make it. Yea so lets count our blessings one more time that Henry beat those odds. I would hope that if I was pregnant and got the ARPKD diagnosis that the baby would follow the same pattern that Henry did. Yet Henry is not the norm for an ARPKD child and doesn't follow the typical trend. That being said the idea of having two children with ARPKD is daunting but manageable. I've been there done it and could juggle it if need be. But the thought of losing a baby to ARPKD... well I don't know if I could live with that guilt.

Fact 3: All facts aside am I emotionally ready? I don't know the answer to that question. My heart ache's for another child. Every time I photograph a newborn, or see siblings interacting my ovaries ache. Okay maybe thats too much information but its true. For the past year my husband and I have talked about having more kids. Yet at the end of the day I just can't 100% commit. I don't know if I can emotionally handle the rollar coaster ride of not knowing what could happen.

Fact 4: I'm not a gambling type of girl. I'm a throw caution to the wind, dive head first, don't look back type of girl but when it comes down to it I weigh my options before saying yes. When those people on game shows can walk away with 500,000 dollars or risk it all for 1 million and they choose to risk it all I just about want to smack them. I'd take that money and run. I know a good thing when I have it and we have a good thing. We're a happy family and have a relatively healthy boy so why shake it up?

Fact 5: Henry will need a kidney transplant someday. We're hoping Chris or I will be a match but how do you juggle that with more than one kid in the mix. Tragic things happen all the time to families with more than one child but if you knew ahead of time something would happen would you do anything differently? I want to be there 100 percent for Henry when he'll need us most. Is it unfair to Henry to not get all my attention? Would it be unfair to the other child to not get enough attention? Would having a sibling make the road a little easier for Henry? Is Henry missing out by being an only child?

Fact 6: Thinking too much can make you crazy! Seriously this one topic makes me crazy. Unfortunately there is no right answer. I could debate this subject for hours. There a million more things to consider as well and I pick all those little things a part in my head all the time.

Fact 7: Your damned if you do and your damned if you don't. Ain't that the truth. I'm not sure I will ever be ok with not having more kids if thats the decision Chris and I make. I'll always think about what life would be like with the 3 kids we always thought we'd have. That being said if we had another child and god forbid something tragic happened I don't know how I would ever forgive myself.

These 7 facts just barely scratch the surface of what swirls in my head when I think about siblings. I want so badly to just close my eyes, take a deep breath and take the chance. Yet I can't shake that little voice in my head. That little voice that knows the devastation ARPKD can cause. The voice that gasped when the doctor uttered the words, 'we're taking it minute by minute right now'. The voice that has seen first hand a boy defy the odds. That voice that fully believes in miracles but is not sure a miracle can happen twice.

"What is madness but nobility of soul at odds with circumstance" - Theodore Roethke

Friday, January 21, 2011

Spinach Calzone

I've been wanting to add a new section to this blog for a long time. With all the snow we got this morning and Henry happily napping I figured I would take the jump and create a diet section. I vowed to blog more this year for me and something I love to do is cook. I made Henry's baby food from scratch and continue to dish up home cooked meals for the little man.

With that being said in 2011 I really need to get a handle on our diet. I could stand to lose some weight and although Henry eats pretty healthy I need to kick it up a notch while he's still young. Remember how 2010 was all about denial? Yea well I started to slip on Henry's diet and ours and just treated him like a normal kid. This is not a good idea for tons of reasons.

Henry's kidneys are working well now and our nutritionist encouraged us to feed Henry like any other normal child. However with the kidney issue and high blood pressure I know from reading that we need to minimize salt and cut back on protein.

Protein is one of those things that the kidney has a hard time processing and the average american diet has just way too much of it. So I've made a goal this year to seek out lots of veggie rich recipes full of plant based proteins and nutrients. We still eat animal meat but I try to limit it to one or two meals a day. Plus the healthier we eat the better. So its a win win for all.

So today I made toddler approved spinach calzone (the full recipe is at the bottom of the post). I've never photographed the cooking process and it was interesting to say the least. I had fun doing it and can't wait to share more Henry approved recipes.

Here are the ingredients:

I preheated the oven to 350 degrees and added 1 tbs of extra virgin olive oil to a skillet with the burner set to medium.
Then I chopped up half an onion and placed it in the pan. I let it cook till the onions looked like they do below.

Next I chopped up 3 mushrooms and added those to the onions.

I took the whole 5 oz package of baby spinach and added it to the skillet. It almost overflowed the pan but in less than 5 minutes it cooked down. By now the kitchen was smelling so yummy. I wish I had garlic on hand because that would have definitely made it into the pan as well.

I turned the heat off on the burner and took 1 cup of shredded mozzarella cheese and added it to the onion, mushroom and spinach mixture.

In case your wondering Henry woke up from his nap sometime before I rolled out the pizza dough and was right up under my feet begging to help so how could I not snap a picture of the little man.

Now back to the cooking. I placed 1 tablespoon of flour on a cutting board, flouring the rolling pin as well and rolled out the pizza dough into a rectangular shape. I should say rectangular loosely because as you can tell my rectangle is more of an ameba.

I then transferred the dough to a cookie sheet that was sprayed with non-stick cooking spray. I was supposed to add 1/2 cup of pizza sauce but due to my little helper forgot and had to backtrack. (hence the remnants of spinach in the sauce but that is life with a toddler).


Then I spread the spinach, mushroom, onion and cheese mixture over the sauce. (Next time I do this recipe I will double the filling but live and learn.)

Now onto the jelly roll part of the calzone. I fold 1/3 of the pizza crust over.

Then tuck in the sides and fold over the last third.

I used the egg, scrambled it and put an egg wash over the whole calzone. Then sprinkled the calzone with sesame seeds. Baked it in the oven for 25 minutes and it was done.

When I cut it in half it smelled delicious and was all gooey and cheesy. I love how you can see the steam coming off the calzone.

I cut a few pieces and henry and I dug in. How delicious does this look?

It was so yummy and henry ate it up. Even the spinach and lately green veggies have been on the the "no" list according to henry. So for the full recipe here you go.

1 package of pre-made dough
1/2 cup no salt tomato sauce
1/2 onion finely chopped
3 large mushrooms chopped
1 package of fresh baby spinach (approx 5 oz)
1/2 cup shredded mozzarella cheese
1 egg
1 Tbs extra virgin olive oil
1 Tbs flour
1 tsp sesame seeds

1. Preheat oven to 350 degrees.
2. Heat skillet over medium heat and add in 1 TBS extra virgin olive oil
3. Finely chop 1/2 onion and add it to the skillet. Cook until almost translucent.
4. Chop 3 large mushrooms and add them to the onions. Cook mixture for about 2 minutes.
5. Add the package of baby spinach to the skillet and let cook until spinach has started to wilt.
6. Remove the skillet from the heat and add 1 cup of shredded mozzarella cheese to the skillet and mix everything together.
7. Place 1 Tbs of flour on a surface and roll out the pre-made pizza dough into a rectangle about the size of a half cookie sheet.
8. Spray the cookie sheet with non-stick spray and place rectangular dough on the cookie sheet.
9. Spread 1/2 cup tomato sauce on the dough.
10. Spread the spinach, onion, mushroom and cheese mixture over the sauce.
11. Roll the dough into a calzone shape.
12. Scramble 1 egg in a cup and brush it over the calzone.
13. Sprinkle the calzone with 1 tsp of sesame seeds (optional)
14. Place cookie sheet in center of oven and cook until golden brown around the edges. (approximately 20-30 minutes)
15. Let cool and enjoy!

Monday, January 10, 2011

My Little Drummer Boy

Raising a toddler is hard. Not that you all didn't know that but more often then not I find myself exhausted and not knowing wether to cry or just laugh. When Henry has kicked over the dogs water bowl and submerged himself in a slobbery puddle for the second time before noon, I don't know what else to do but laugh sometimes.

Henry is active, rambunctious and a little sweet hand full. He's curious, inquisitive and into everything. He'll climb on it, under it, knock it over and try to take it a part. I'm not going to lie I get frustrated most days. Yet I'm thankful he is so smart and inquisitive. We 100% prepared ourselves for the day when early intervention would have to come into our home. For the first year we worked with Henry to make sure he would hit all his milestones and watched closely for any signs he may be falling behind. I tried to do everything I could for him to help him along. Miraculously he flew past all his milestones and is right on track.

I took some time this morning to capture Henry enjoying one of his favorite toys. So here is my little drummer boy.




Saturday, January 8, 2011

I'm back

I haven't forgotten about this blog. It's been looming in the back of my mind for the past 5 months. There is so much I want to say but every time I put my fingers to the keyboard I freeze, close the laptop and go about my daily life. I could say I've been busy and life's been crazy but we're always busy and life is always crazy. The truth is I've been in denial. Quite perfectly happy but in denial. While attending the pkd conference in August a woman spoke about denial and how she didn't want to believe her child was sick and it was so much easier to pretend her child was fine. I related to this one thought more than anything else.

I don't want my son to be sick. I don't want my son to suffer. I don't want my son to be different. Unfortunately this is my reality and sooner or later I'll have that conversation with Henry's doctor that I've been dreading. The one where we discuss how much longer Henry has until he needs a transplant.

It is so hard to live your life normally with that looming in the background. So to cope I don't think about it. I give Henry his blood pressure medicine 3 times a day and don't think about it. I take him to his doctors appointments but don't think about it. I've spent too many months not thinking about it. Until now.

We've recently bought our first house and we want to do a photo wall in the living room. In our apartment I had never hung any pictures of Henry up and I never thought about it until now. Tonight I made a plan to look through my hard drive and pick out the pictures for the wall. I found myself looking through all the images of henry in the hospital and throughout his first year and I couldn't keep the tears from streaming down.

I forgot what it was like. Well not really forgot just allowed myself to not think about it until tonight. I only talk about how good he's doing and how far he's come. I don't want to think about the future, the transplant, the sickness, the decline, the reality that is bound to hit me at some point.

2010 was a great year but I'm ready to face 2011 head on. My goal this year is to find some peace with this disease. To not ignore but embrace. I'm taking this blog to a more personal place this year and I hope you all appreciate that and take the year long journey with me.

I'm so sorry for letting this website lay stagnant for so long but I think you all understand. A wonderful NICU nurse once told me that when you have a sick child you go through the 5 stages of grief. She said you need to mourn for the life you thought you would have and accepting the disease and what lies ahead is difficult. She also explained that everyone mourns differently and you can feel a million things all at the same time. I'd like to think I've checked denial off the list but I'm sure at some point I'll come back to it. For now I'll focus on acceptance.

"We must accept life for what it actually is -- a challenge to our quality without which we should never know of what stuff we are made, or grow to our full stature." - Ida R Wylie