Fear Not

I remember when I was younger and I would be visiting my Nana and Poppop…as it was time to go I would often say “ok, so I will see you at this or that” and my Nana would reply “Lord Willing”. Now as a young adult I would just smile and feel how cool it was that they really thought that way. They never seemed to plan much but would always believe if it was in their plan then they would be there. I never really appreciated the truth to their words until I got older and realized that there are no givens in life. Planning is great yet sometimes the plan will take a different form than the one you had in your mind.

Today I learned that my mom will not be going to Milan with me. It was sad to hear this yet I know it is for good reasons so I have to just go with the flow. My mom needs surgery ASAP to fix an obstructive hernia (post whipple). All the planning she did for the last two months to prepare is now unnecessary. The lists for the lists and the phone calls to make sure she has the right things for Milan mean nothing now. There is another plan…not the one we thought but if we can believe there is a BIG plan then there is something else at work. Thankfully I have the best Mother-In-law who is ready to go…no questions asked.
Ultimately everything that happens in life has a plan surrounding it and I know at the moment it is hard to see but somehow, some way we eventually can look back and see it unfold.

As I started 8th grade it was also the start of school number 8. I remember the fear and anxiety that came with it and the idea of meeting new friends again seemed a daunting task. I think at this point in my life I was my own worst enemy. Only now can I have compassion for that young girl who beat herself up daily not thinking she was good enough to make new friends or not believing she was worthy. It is amazing how I never thought I could get through those tough times and yet somehow I did. Thank God I did not believe the things I told myself and just kept going. There had to be a reason and a plan for me.

When I felt the pain in my chest and my heart racing like I just ran a race I knew something was wrong…after a trip to the ER I learned I had a panic attack. NOT FUN and not something I would wish on my worst enemy. After spending the next 6 months trying to figure out how to get through this nightmare (without drugs) I finally figured it out. I once again was torturing myself. I had beat myself up and told myself I could never get through this and that I was so messed up (putting it kindly) . All negative self-talk…and to anyone who has had anxiety they know EXACTLY what I am talking about. I did not want to go through this…it was not fair and I did not know how I would ever come out of it. 18 months later Eric was born and my SLOW journey to believing something good would come out of this started to unfold.

Almost 15 years since Eric was born and probably 7 since conquering my anxiety on my own…problems come and go lessons are learned and self-acceptance is becoming more a part of my life. The older I get the more I see that all of my life is un-plan able. Flash back to Jan of 2012…finding out my dad had lung cancer and losing him a month later. Just as I am dealing with losing my dad, the biggest blow of my life is right around the corner…Sept 2012 Eli was diagnosed and we were told he will not live long. I vividly remember thinking “there is no way I am going to get through this” This is every parent’s worst nightmare …and me “I’m not strong “ I would tell myself. “There is no way I can do this… I’ll just quit” “Yeah right. How could there possibly be a plan in all of this”

All I can say today… a year and almost four months into this journey… is I truly believe that there IS a reason and a plan for all of this. For everything good that has come from this and everything that is not so good coming from this situation… there is something in the works that we just might not see today. We might not realize it until much later on but I believe the good things will far outweigh the bad and continue longer than I realize. The only reason I believe this is because I know God has a plan for me.

I have been given a gift of raising four awesome kids. It may not be the plan that I had thought of when I was a young mom but I am going to try to learn not to question it. It is a true blessing to not be so set on what I thought my life should be like but to be open to what might lie ahead.

Posted in Diagnosed

Have you ever thought that life is a set of choices? I don’t mean choices about college, love, where to work and so on. I mean choices about either choosing the high road or the low road…the wide or the narrow way. I think many if not all of us go through life and barely give it a second thought because we just REACT.

Picture this… Everything in life happens for a reason…every person you meet, place you go, or situation that arises is meant for you. You are given so many different opportunities to see what you are made of and who you are. How will you choose or respond? What road will you take? I am not going to sit here and say we all need to be perfect because there is no such thing. What I am saying is have you ever contemplated life and how the decisions you make affect others? Have you ever thought that the typical way we respond to people most of the time comes from our ego…from our fear of being vulnerable?

If God allows certain things to happen to us or certain situations into our life it may not always be about “us” it may partly be about all the other people surrounding us. How will they respond? What if with every situation we have 10 different ways to react…1 being the most selfishly and 10 being the most “Christ like”. What if this time here on earth is truly a school to learn lessons and do the best we can…how will you fare? Now that is not for me to judge but what I want to share is this…It is OK to be vulnerable, it is o.k. to say I am sorry, it is o.k. to be wrong and it is o.k. to express these things. What are we hiding behind? How many times have you done something where you think you may have reacted too quickly…then you feel bad or act like “oh well it was their fault anyway” then blow it off. Why oh why is it so easy for so many of us to keep that guard up…the guard of “well I am not giving in, or it’s not all me so I am not worrying about it” I wonder this so often … I also wonder if every one of us had one day where we could see how our actions or reactions to people affected others. If you could see how the quick smart comment you just spewed out of your mouth (or in this day and age a txt or email) changed that other persons day would you still say it? Or would you think how you could have approached it differently? Go back to yesterday or the day before and find something that you are not happy about how you reacted…how do you think that may have affected the other person? Maybe your reaction was a 4 out of 10 and you learned something from the issue but if you would have chosen a different reaction you could have learned even more. We all have so many opportunities to act more “Christ like” and let that guard down, forgive, or maybe just to think before we act.

I have to say it is not much fun needing people…I never thought in a million years that I would have to rely on people or need people for help as much as I do. Although if I look at it differently, instead of being sad about all the help we need maybe I should look at it like this. Our crazy, unique and sad situation has brought out so much good in so many people that we know and even more that we don’t know …and maybe just maybe that is all part of the plan. Maybe it’s not just about MLD and Milan… there is so much more and I witness it every day! The amazing things that people have done for us, the love that so many show toward us and the people that are there through it all.

I hope not one of you ever feels helpless like we have…I hope not one of you needs the support from people that we have needed and if you have made it through life so far without needing others count yourself blessed.

As I was on the phone yesterday, I was speaking of a sadness that is deep inside of me…a sadness that just seems to come from the sensitive, emotional person that I am. I was focused on all the wrong things at that moment …just then there was a knock at my door. It was my friend Laura…she knows I love her cookies and she stopped by with a card and cookies just to brighten our day. To me that was a big slap in the face from God…”look Becky, don’t focus on the ones who miss the opportunities, who fail to see life outside of their own little box” “focus on the ones that are right in front of you and have been from the beginning.” I learned a valuable lesson yesterday and it has changed my thinking. The thing with lessons is you have to be open to them… try it…it just may change your life…or maybe you can change someone else’s life.

Posted in Diagnosed

The excitement in Eli seemed to mirror the excitement I was feeling. As I watched him with a Little Smiles Stars Ball book opening it to the page with his picture, getting ready to sign his first autograph of the evening I watched as he opened his sharpie and put a big E over his picture. I watched him and fought back the tears that wanted to flow freely about so many things but at this particular moment it was from watching his little hand shake as he held the pen. The whole reason I/we believed something was not right in the beginning has now become even more prominent and a reminder of this horrible disease that we are fighting. IT SUCKS!!!!

As we finished a wonderful evening to honor some amazing children we knew we had to get some sleep for the MAW walk this morning. What a wonderful showing by some of our amazing family and friends. To be there to walk with us as we try to give something back to a wonderful organization that has given us so much…so many memories that hopefully will live on for a very long time. A young adult wish recipient spoke about what MAW means to her and her family…how she is so grateful and how she will work volunteering for MAW as long as she can! I really hope someday Eli AND Ella can share their experience of what their wish was and how MAW made that come true. The truth is we just don’t know and we might never know so it is just another opportunity to live in the present moment and try not to think of the future.

While I try to live in the present moment there are many reminders in the present moment of things Eli just can’t do like kids his age. After the walk I dropped Evan at baseball practice. When I pulled in we went past Elis age group and I can’t help but wish he was out there playing. Fact is, he is just not strong enough…truth again is I don’t know if he will ever play again. Maybe he will be the kid that parents feel sorry for …maybe he will think he is better than he is because he gets treated differently or maybe he will realize that he just can’t keep up with everyone else. Sometimes he asks me but mostly Hut “Will I be on the All Star Team like Eric and Evan” What we both say is “work hard and keep getting stronger” …we have to believe WITH him…no matter how hard of a stretch it is TO believe.

There is a song by Pink…Beam Me Up… I am sure most people have heard of it. It is a great song that I love but there are a few lines that really move me. “Beam me up, let me be lighter, I’m tired of being a fighter, I think a minute’s enough, just beam me up” This line particularly speaks volumes. It can be so tiring being a fighter…fighting the disease, fighting my emotions, more importantly fighting to try to find peace, joy and light on the days when darkness seems to overpower everything. Maybe that minute…if it could ever happen, would be enough to recharge to just keep on keeping on…or as my brothers and I used to say as my dad was dying …Just keep swimming (in our best Dory voice)

So today we got really great news…finding out when Ella will be treated!! We also found out that Elis marrow looks good and the enzyme that he was lacking is now in his body at almost 3x the amount of normal! Simply wonderful news!! It is just so nice to have a plan. As I have had the day now to think about the news and feel everything that comes with it I can honestly say that the feelings are so mixed. There are good and bad things about knowing what to expect when we go back …I think they both are obvious what they are but some are worse than others. The thought of Ella turning into a semi monster from anti-seizure drugs just makes me sick to my stomach and the picture that is in my mind of her little bald head is just something I almost can’t fathom. Sometimes I beat myself up thinking these things are trivial but I will acknowledge how I feel and try not to fight it.

Maybe one day God will beam me up, give me a minute and I will ask him why…then maybe he will give me the strength I need to keep going because I am sure I could never understand his answer anyway. Until that day I will just have faith that SOMEDAY …YES SOMEDAY I will know why and this will all make sense.

Elisabeth Kubler-Ross …”People are like stained – glass windows. They sparkle and shine when the sun is out, but when the darkness sets in; their true beauty is revealed only if there is a light from within.”

Posted in Diagnosed

It seems like yesterday when I called home to tell Eli’s dad and brothers that he was “the best one yet!” As he was laying across me as calm as could be and nursed like it was nothing new I truly felt like the world was his. I remember calling Aunt Jennifer and Nana saying “He is so pretty…not cute or handsome but such a pretty baby” These blissful feelings did not last long because before I knew it we were home and he was a handful (putting it nicely) “I wonder if there is something wrong with him”

You may have heard this before but Eli and I did not seem to “like” each other much in the beginning months. He always seemed to be uncomfortable or just not happy. Now of course I loved him but boy oh boy did my friends and family hear my every complaint about him. Thank God for him, most of them were on his side;) It’s funny because out of all the moms I knew, I never really heard them complain like this but I guess you could say wearing my feelings on my sleeve has always been my way of living. I always thought to embrace it all. Whether the truth was not the “typical” thing or not… it was what it was. I remember many different times running into people in random places like the grocery store, or a restaurant and as they would say how is Eli doing I would lose it! I would completely understand if people would walk the other way when they saw me because I would have too…maybe. “ I really think something is just not right but what could it be?”

As Eli turned three, things really turned around for us. We started to have this cool bond and we both seemed to really love each other:) He did not seem as frustrated as he once did but nonetheless that feeling of questioning grew and I could never quite pinpoint why. “I know something is wrong…this is crazy!”

After many doctor visits and more questions about why he could not figure out how to ride a bike or why things seemed so challenging to him we finally got our answer…MLD. Now obviously a lot more happened in between the age of three and diagnosis but the most important thing is we finally had an answer. I finally felt that everything I had felt for all those years, all the questions I had asked myself over and over were finally answered. Not quite in the way that I had hoped but at least there was an answer.

As I have been thinking of Eli’s upcoming Birthday during the last week my emotions have been a bit more intense than normal. Any picture PRE-MLD has almost torn me apart. The kids that I see in Target or really anywhere who are the same age of Eli or Ella just throw me into sadness. Although the only difference is I know that I don’t know their story I only know what I think I know. Meaning I don’t judge that this is a “healthy” child anymore because you just don’t know. I try to remember that and move on.

There are times I wish Eli was older so he could understand the depths of my love for him and how he truly is my hero. It’s a great thing that he cannot fully grasp the severity of MLD but some days I wish he understood how truly amazing he is. Someday maybe he can look back and see how he changed me and my view of what a TRUE HERO really is.

Eli…As our journey together seemed to start a bit on the challenging side the love was always there. Somehow God gave me the ability to be intuitive to you, your body and some of the things that were going on with you. I have cried many times in the last 8 years for different reasons about you but today I am thankful for those tears. Those tears led me to trust in myself, trust in you and to push for where we are today. Every time I start to think of the last year and what you have been through I have to stop and fight away the tears. No child should have to go through what you have gone through yet someday you will understand how lucky you are to have had this opportunity.

When I thing back a few short months to our time in Milan I want you to know as your mom that it was the most painful thing I watched you go through. From needles, port needle changes, minor surgeries, heavy dose chemotherapy, the anti-seizure drugs which I won’t even approach the sadness that came from those drugs, all the other meds you had to take, 45 days in the “BOX”…the days of mucositis where you could not eat or swallow and really all you could do was drool. This is a pain I hope you will never remember. Honestly I think that one thing that never caused you any physical pain but caused me pain for you was the fact that you were so compliant! You were so amazing and for the most part never gave the doctors or nurses any problems and you were so sweet that the majority of them really fell in love with you. I remember many moments when your personal privacy was not yours anymore and you just went along with it all so well. During some of these of these moments I would quietly hide a tear or two because, well… I just felt sad for this. That was not the only time that I hid tears as it became quite common as you had to have your needle changed, when you would yell at me that this was my entire fault or when it took me two hours to get you to take your meds. Many tears were hidden but if you caught me crying that compassionate side of you would come out and you might give me a hug or even just a smile would make it all better. Not to mention all the hugs I got from the various amazing doctors and nurses who would come in and tell me that this is all normal and it will all be ok. It will be O.K. Eli…no matter what because you are amazing and I could have never have imagined showing so much bravery in such a challenging situation. You are a true hero!!!

So on the eve of your Birthday as I type this you are snuggled up falling asleep watching Sponge Bob (Sorry Federica…LOL!) counting down the hours of when you turn 8 EXACTLY which makes me smile! This last year has been a true challenge but you rose to the occasion and kept pushing. I have great faith in you Eli that in the next year we will learn how to ride that bike that you have always wanted to ride and swim in the deep end all by yourself but most importantly we will LIVE and live life to the fullest because that is what you taught me!

This is my promise to you Eli… I promise to NEVER forget your struggles, I promise I will try to let the past and what you have been through help shape who I am today but not define what I am about. I promise to strive to not live an angry life or to be envious of others. You have taught me to be true to myself and I promise that I will ALWAYS help you remember to be true to who you are because this is so important. I will smile, laugh, have fun, and enjoy life…not taking many things for granted like I once did. I will pay it forward Eli as much as I can in honor of you and what you have taught me.

These are my promises to you Eli and I hope and pray that one day you will be able to watch me see all these promises through… to remind me of these words that I wrote to you so long ago. So don’t look back Eli…only to see how far you have come…look forward to the future and all you can do with your new life!

Happy Birthday Eli

Posted in Diagnosed

Some days you just want someone to be able to make it all better …you just want that person who really loves you and cares about you to be able to take away all the fear, sadness and most importantly the unknown. I so wish there was that person but as I am learning there is not any one person who can take anything about this journey away yet there are so many people who make it more bearable.

It is amazing to think this but this past week was 8 months since Eli was diagnosed with MLD. I am sure many people can relate with a date that sticks in your head and what you remember from that day. I am not extremely good at remembering what happened yesterday but I can remember everything about that day. The weather…my dream the night before…the wait to get the MRI…the fear when people suddenly started avoiding our gaze in the waiting room as we were wondering what was taking so long…the phone call saying the doctor wants to see you before you leave…seeing my baby laying there waiting to wake up as we were waiting for the doctor and most importantly the walk to the room to hear the diagnosis…I remember it like it happened yesterday….I also remember the slow ride home and the thoughts that went through my head…the barely there conversation with Hut, not knowing what to say…looking at my precious Eli in the backseat , knowing he has no idea what is going on and wondering how long I will have left to snuggle him, say his prayers with him and have him call me Mom.

From the beginning Hut and I used to wonder how people would react…we were now the downer family who had a “sick” kid. How would friends and family react?? I remember feeling bad for them …who knows what to say?? I know I still don’t know what to say!  It’s funny what we thought at the beginning, and it’s interesting to see how differently we think now. These kids are gifts, who are here to teach a lesson …only God knows that lesson and to each person they come in contact it will be a different lesson or it will be for a different purpose. I believe this with all of my heart. I have seen Eli alone touch people who barely know him and I feel blessed to call him my son! WOW! How amazingly far we have come in 8 months!

That being said I want to explain something to those who may be new to our story or more importantly new to their faith in God or straying from him. Eight months ago after diagnosis we came home and I got on Facebook…I found Amazing Sam who had MLD and had a bone marrow transplant. I emailed his mom and got a response right away. Jolene was an awesome Mom with great advice and was there to answer any question I had. Right away she told me about Amy Price who had 2 precious babies with MLD…she said Amy & Brad got their youngest son treatment in Milan. OK I contact Amy & she was so so helpful…giving me all of Dr. Biffi’s information in Milan. Immediately we contacted her and sent her Eli’s MRI along with blood work results. She replied fairly quick that they could not treat Eli…his MRI looked bad and he had juvenile MLD. SHIT!!!!!!!!!!!!!! Back to the drawing board…After much research we decided against bone marrow transplant. Just our personal decision and everyone has a choice. Ours was not going to be BMT. We got the others tested and the day Ella tested positive was not an easy one at all but after I slept on it I knew we had to contact Dr. Biffi again. I remember almost begging her…please think about it now that Ella was diagnosed. After what seemed like forever she agreed to have a neurologist write a report on both of them to let her know “clinically” how they were doing. We got our appointments and off we went. The neuro was amazed at Eli thinking that due to his MRI he should be in bad shape. Ella had a totally normal neuro exam and Eli was not too far from that. We asked that he write a report so we could send it to Milan. By now it is mid-October. I found out two days before Halloween that the report was done. I was so scared to read it and had to read over & over before realizing it was just what we needed to send to Milan. The next morning Dr. Brogan sent it off. After almost a month of waiting …and let me tell you it was not a great month…we got the email saying that they would see evaluate them both in Feb. OMG…GREAT news but another two months of trying to keep him stable. I am not in control…I can’t change this one way or another… that was one of the hardest things to learn. Feb 8^th came quick and we were off to Milan…The first day of evaluations went great and I think they were very surprised to see how good Eli was. He did great with all the tests except the nerve conduction test and they were a bit disappointed. I was scared…would this affect their decision? We met with the doctors Thursday and learned that we had to wait another two months to see if they would accept him. Once again…more waiting…how could I do this… it’s like a slow torture…and once again it is out of my control. Back home to wait and as you wait you just go through the motions of life waiting for the time to pass because your mind is just not there. I knew anything could happen in the two months we were home but I prayed all would stay the same! April 22^nd came quick and I knew he seemed GREAT! We got to Milan and he did just as well on all his tests as he did in Feb! After a long week of waiting we found out they would treat him. It is still weird to write those words as the past 8 months we have fought so hard and now it is here and he will have a shot at life. UNBELIEVABLE!!!!!

As I started this before I came to Milan… I can now add another amazing thing. Today we had Eli’s neuro appointment and as I watched him run down the hall, hop in a square, touch his finger to his nose (along with many other things) I felt that he seemed exactly the same as Feb! After about a 20 minute check up the doctor said just what I thought…NO CHANGE!!!! I remember thinking as he was running down the hall to grab the elevator how lucky I felt. I can’t explain it and I don’t think the doctors can either…he is just unexplainable. To me he is a gift… a gift that I am so grateful to accept! Thank you God!!

It’s truly incredible how the plan is perfect…even if it doesn’t turn out the way we want, there are many things that come from this perfect plan that can not only change our lives but the lives around us. Be open to the mysteries of life that surround us every day…you never know what you may learn.

Posted in Diagnosed

As last night came to an end I was lying in bed with Eli and I was asking him how his boo boo felt where they took the aspiration (his hip pelvic area) anyway…he was saying he felt fine but did not want to go back to the hospital anymore for any more needles or tests. After that came a slow quiet weep and it was a true cry…a cry that would make any parent cry right along with them. As I tried to hide my face I really couldn’t and when he was my tears he just hugged me. At that point I told him I would be right next to him through all of this and that I was so proud of him. I told him so many people at home are so proud of him and are praying for him to be as brave as he can be. That put a big smile on his face! I have to say, at 7 & ½ I know he understands but I don’t know how much so I feel there is a fine line with what I can say. This is where you just trust your job as a parent and try to do the best you know how at that particular moment! As my dad would always say “kid’s don’t come with instructions” and situations like this definitely don’t come with instructions either. I have always said that my kids will be in therapy for something when they get older but I know it will never be over wondering if they were loved!

As you can imagine there have been a lot of emotions leading up to this trip to Milan. I am trying so hard to just take one moment at a time but sometimes life just gets the best of you and sucks you in to all the emotions that we are made of. We had a Buona Fortuna party for Eli & Ella to say good luck …it was a wonderful party with many people showing up to wish us well. The kids really did not ask too many questions about why we were going for so long they were just happy that they were done school for the year!! Ahhh…what  a nice feeling to be that excited an innocent. I remember a few times breaking down for a minute of two at the party…maybe seeing the kids with one of their friends from school, the photo booth pictures and sometimes just looking at Eric and Evan…noticing how tall they were or looking at the smile on their face. Would they be much taller when I get home?? Would that smile remain for the time I am gone and how can I help them make the best of this situation….so many thoughts running through my head. As we all know the anticipation of life and things we fear is normally much worse in our mind than the actual thing. I had to keep focused on that!

So…now the trip…the day and moment we have been waiting for…we have waited 7 months for the possibility of having hope…we have asked thousands to pray and believe with us that this dream would come true…here it is now standing right in front of us…how exciting!!!! Yes I am scared to death and don’t know how it will all work but I am hopeful that I will go home with 2 children that now have a shot at life! When you think about it, it is NUTS!!! A clinical trial where 9 children have gone before (and I thank them all) in another country…this is stuff you read about not stuff that happens to you. Well, it is happening and I am embracing it as best as I can.

It was much more comfortable arriving at the airport this time although the passport line was brutal and the kids were wiped out!!! Hut rented a car this time (crazy us) so after the long wait we found our car (9 person van) and headed out. OMG thank God for GPS even though we had no idea really what we were doing. After getting lost only a couple of times we found our new “home”. Bringing 7 bags up was not the easiest especially in an elevator that fits 4 people maximum! Before we could bring our bags up we had to see our room. Let’s just say that there was no way it would work. It was a room with two floors and a small spiral staircase to go from one to another. It was small enough that no luggage would fit. So…I said we need another room and magically they found a one bedroom apartment for us. They brought two more single beds up and we were now in our new home!

After a few hours of unpacking we decided to venture out. We need to fill our microwave sized refrigerator with whatever we could find that they would like. Thank goodness I packed a whole suitcase of food for them that I knew they would enjoy! In the next two days we found our way around a bit more, were shown the local mall and grocery store thanks to another gene therapy family who was here getting a check up (Thanks Kim) and slowly started to get used to the time change! UGH!! The first three nights the kids did not fall asleep until after midnight!

Monday came quickly and thank goodness our first appointment was not until 11:30. As we did not know what to expect the first day we were just leaving our minds open to whatever. We met with Dr. Biffi and her colleagues (there were many) and it was a great meeting. I think they were very happy to see Eli doing so well! As Hut and I were going over treatment Dr. Biffi and the neurologist took Eli for a quick motor skill check to see how he fared from last visit. He was not gone long when he came back and they said he did great! No changes and he actually improved one point on one of the tests! YAY!!! My heart was singing!!!! This was a good start to the trip! Tuesday was blood-work, EKG and chest X-ray for Eli. Yes Ella cried and even Eli did this time … but I look at it like they will never have to do that one particular thing again:))) Poor Ella did her testing with a fever…don’t know exactly what’s wrong but some kind of virus and cough…poor baby…thank goodness she was done on Tuesday. Eli went back Wed for his bone marrow aspiration and he was not happy with not being able to eat but Hut took him and said he did just fine. I forgot, Tuesday he also had his appointment with his psychologist and he did great! NO CHANGES!!!! YAY!!!! Another good thing!!

So as I write this it is Thursday morning in Milan and we have the day off…tomorrow too. It is Holiday here in Milan and a perfect time as Evan & Mom-Mom just landed and we can now spend the day together…tomorrow too! I need to figure out how to do all of this on my own as Hut is leaving on Sunday. I don’t want to keep the car as this place scares me to drive. All the cars are tiny tiny and ours looks like a monster. (as we found out the first day when Hut swiped the side molding off of the car by swiping a pole) At least it is something I can still laugh about. (not him though).There are really no lights just round abouts (like Jersey circles) and the drivers are a bit on the crazy side! We will venture out to make sure I have the metro down pat and hopefully get the internet set up so I have it when we are in the hospital. (The important things;)

Most importantly I feel good… I feel good knowing we are in the best possible place for us right now and I promised myself that despite any negative feelings I will make this as happy as a time as I can. Lots of goofy dancing, games in the hall, races to the laundry, and plenty of snuggle time:)

Off to the mall where you pay for your cart and grocery store where you pay for your bags (all the little things we are learning about Milan) Going to try to show Evan & Mom-mom around today.

As I finish writing I am feeling grateful and happy today so I am enjoying the moment. Realizing how far we have come on this journey so far and being grateful that the Doctor from Dupont was so grave with her diagnosis. As Hut said if she did not make us think that it was so bad we might not have fought so hard and quickly for where we needed to be! Yes…its true… sometimes when you are going through a situation and it seems so dark and you don’t understand why a particular thing has happened or is happening people say maybe someday you will see the reason…I can now see that God only allows us to see what truly was meant to come from a situation when we can step back and look at it without the emotion that we have when we are going through it.

Posted in Diagnosed