LIFE ISNT FAIR!!!!!

*this is a blog that has taken me a few months to write so it may seem a little jumbled. men you may not be interested in the aftermath of pregnancy skip the first paragraph.

I was inspired to write when I woke up in the middle of the night last night with a major bleeding, I had gone to bed cramping real bad. After being awake for over an hour trying to contact the nurse to make sure everything was normal I was informed that I have probably started my period! What?! I am only four weeks out from having Jude and I am pumping why the heck am I starting my period already?! Now don’t get me wrong I am pumping because it is good for Jude but I do have to admit not having a period for a while sounded like a nice idea too! All I could think was “of course, of course I would be that small percentage of woman who start their periods back ridiculously early” “of course I would start my period before I even stopped my bleeding from the delivery.” When I told my mom she said well nothing else in your pregnancy has been “normal” I cant help but to think nothing else in my life has been “normal”

I’ve always wanted to have children. When I was growing up everyone wanted to be a doctor, ballerina, nurse, businessman or whatever I wanted to get married and be a stay at home mom. I have always wanted to have children, even though I want to be a social worker that has always come secondary by far distance from being a mom. I would have and do anything to be a mom and even more to stay at home with them. I would read Family Circle when I wasn’t even married while my friends would sit and read US Weekly (haha becky) I thought about how I would do all these things in preparation for my baby to come how I would enjoy being pregnant and proudly show off my belly. Well we know how my pregnancy really went.

The starting of this blog was back in February, I would like to say I have my heart in check now everything in God’s plan makes sense and life is great but of course that is not the case.

Last year my sister, Cassy, got engaged! Cassy wanted a destination wedding and I very eagerly encouraged that, an excuse to go to the beach? Yes please! I also very much supported her asking one of my best friends to go as the photographer(maybe for my benefit J ). Chris and I knew this would be a crazy trip for us, pinching pennies to afford to go and having a 3 month old in Mexico, I even went and picked up passport info to fill out for Jude ahead of time, the thought of missing my baby sister’s wedding was clearly not an option! I mean the besides your wedding the most exciting is your sister’s wedding. It’s that once in a life time moment to share in the celebration. But tonight I sit here in bed with Jude while my family is in Mexico preparing for my sister’s wedding tomorrow. It breaks my heart to know that going to my sister’s wedding is no longer an option, that this will be a time that I will never get to share with her. But of course it doesn’t stop there, at the end of June my other sister, Natalie, is getting married in Alaska, this is also not an option for me to go. My two sisters and I have to miss out on two of the biggest days of their lives….. Yes, life is not fair!!

I feel at times my life is a constant battle, today we were at Jude’s doctors appointment and he was really wanting to be held but if I held him then he couldn’t eat. This was not a problem for other mom’s in the waiting room.  I cant carry Jude around the house with me, he cant go in the swimming pool, we cant leave the house for more then 4 hours, I cant just put him to bed when he is tired; his cares take almost an hour at night, I cant run to the store with him; it takes at least 30min to load him up w multiple people helping, I cant leave him alone for more than a minute or two, I cant breast feed him, I cant leave him with just any babysitter(actually besides Chris & I only my mom can watch him); they must know all trach cares, I cant hear him talk accept for less then an hour a day when his cuff is down,

Note this is now my third time trying to finish this blog and I now have it all figure out! Ok maybe that last part is not true. Well both of my sister’s are married and to add to the fun Jude had a shunt placed in his brain on Monday. He now has four foreign objects in his body and in a few months when he gets tubes for his ears it will make five! I am afraid to ask what else could he have placed in him?!

Well it is August almost September and Jude is still on his vent, he was only supposed to go home trached. I feel like him and I live in the living room. Although we are making progress I feel that we/he should be farther along. There are so many things I want to do with him and place to take him, he’s my little baby I want to show him off proudly.  we have had a few realization talks of where Jude is at and what that means in our near future. We had planned (maybe naively) to travel with Jude to the NorthWest, this wont be happening for the first few years of his life.

OK this is my fourth and final time writing this blog and as you can tell there are still many things that I find not to be fair & maybe you agree or maybe you don’t.

 I cant help but to think life isn’t fair, then my mom’s voice in the back of my head says, “life will never be fair!” ughhh I hated hearing that growing up! Who knew it would be preparing me for my adult life. I find myself often trying to make things fair for people or what I assume to be fair. I don’t want people to miss their chance or not have every opportunity. Truth: I feel bad for the mop that has to stand in the rain because the person has found their new Swiffer (ridiculous I know). My econ professor would always talk about how people being born into certain wealth or life style doesn’t matter because if everyone when born was given the exact same amount of money and aloud to pay whatever to whoever and however much there would still be rich and poor people. He’d always ask the class who would actually willing pay the same amount to a random officer out of their own paycheck as they would to go see a football game. We want fairness but really what we want is a life of no pain. We want our cake and eat it too. I think I have spoken about this before, but I don’t believe God is punishing me or trying to teach me a lesson. I think God cries with us, he felt the pain and cried the day we found out about Jude’s tumor, he cried with each painful moment Jude had. Satan wants us to believe that God did this to us and now we have to face this horrible life but God did not do this to Jude he knew this was going to happen and so he began to set life emotion to help guide Chris and I to be the right parents for Jude. Chris and I always talked about his decision to work as a special Ed teach and mine to be a Social Worker was no coincidence we knew God must be preparing us for something (& not the being poor part). How can I say life is not fair and pout when I clearly can see God preparing so many things and people to help us in this journey with Jude. It’s so easy to be tempted to look at the other side and only see the negative in our lives but the truth is without all this “bad” stuff I wouldn’t have the Jude I have now I would have another baby and all though I am sure I would love them they wouldn’t be my Jude and I cant imagine not having him tubes and all.

I know I don’t have it all figured out and I can say that Satan is constantly tempting me with what I “deserve.” He plays into my shame when I want to scream making me think I dont need to be a whiner but then when I try to be "strong" then I am not fully honest. so maybe this blog is my way of saying life is not fair but that's ok because God is my strength and he will pull us through and has given us all the blessings.  We all have hard things in life I am not saying we just act like they are not there but I have made the decision not to dwell on the bad. We all have three different ways we can see our own lives either written only with the bad and missing what blessings we have, being written only with the good and not really honestly seeing our life, or being able to accept the bad and know the good is a great blessing. I could probably share for pages the things I have learned in regards to what is fair, being truly grateful for what we have, and ultimately trust but I think it can be best summed up in this scripture:

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.

I rejoiced greatly in the Lord that at last you renewed your concern for me. Indeed, you were concerned, but you had no opportunity to show it.  I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do all this through him who gives me strength.

And my God will meet all your needs according to the riches of his glory in Christ Jesus.
Philippians 4:4-13 & 19

Go for Gold!

     It's an exciting time right now in America.  The Olympics has just finished up with the US finishing on top with the most medals and consequently the most gold medals.  The Presidential race is heating up with talks from both camps guaranteeing their candidate for victory in a few short months.  Football, both NFL and NCAA, are rearing up to start while baseball is nearing the end with the World Series in October.  There's quite a lot going on and yet Tracy and I are not very aware of any of it. I myself caught maybe three or four minutes here and there of three or four events in the Olympics.  (To be perfectly honest though, I have never really cared at all about the Olympics).  As far as the Presidential race is concerned all I know about either candidate is what I hear about in commercials for the news shows (again, being perfectly honest, I hold very little stock in who the president is and think neither is worthy of a vote, although that's best saved for another talk that I'll never have).  I suppose my point is that with all that's going on in the world we seem to focus a lot of our daily attention to Jude right now.  It's tough not to.  Not only because he's so cute, which is fact whether it's coming from his dad or not, but also because he is making some exciting progress in his growth.
     As some may have already heard Jude has recently started trialing off his ventilator (as you can see up above he likes to even trial himself off).  What this means is that three or four times a day we unhook him completely from the ventilator for up to five minutes and let him breath completely independently.  So far, it is has gone really well with the exception of his allergies flaring up and getting him a little sick earlier this week.  Even with his allergies, it was an unexplainable feeling to hold him and walk around the house for the first time, completely free from any hoses hanging off of him.  From the look on his face he thought it was pretty neat too.  In addition to trialing off the vent, we recently started him on some solid foods.  Now, to clarify, I mean more taste-testing than eating.  He's not exactly getting a meal out of the foods.  Tracy has fed him some basic baby foods: your strawberry/blueberries, your strained sweet potatoes, etc.  He also tried some condiments which was recommended by his Occupational Therapist.  He seemed to like ranch dressing the most, although if I were choosing from salsa, ketchup, and ranch I think I would choose ranch out of the three as well.
     It's exciting to see Jude at this point along the journey we also know that we have a long way to go.  Many have asked us when Jude will be off the ventilator completely.  I wish I knew that answer or that anyone knew that answer.  That's between Jude and God, I suppose.  We can hope that by around the Holiday season (November to the end of January or so) we can expect him to be off the ventilator during the daytime if things continue to go well.  We will slowly, month by month, increase his time off the vent until he is off for a half an hour or more at a time until he shows that he has no real need to be on it.  He will be on it at night for awhile, however.  Since we slow our breathing down when we sleep, vent-babies are kept on the vent at night even after they are breathing independently during the daytime for a significant period.  Even just imagining him off the ventilator during the daytime hours seems fictitious and a million years away.

     For now, we are excited to see his progress and feel very fortunate for all the support we have been given and continue to get.  We would be far worse off if we did not have so many people by our side and God who provides everything we need, including love and friendship.  I will try to keep those that are interested updated on Jude's progress and hope to post a video soon with his time spent off the vent.