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June 8- the real story

posted Jun 8, 2012, 4:00 PM by Sean Molby

First off, I would like to say thank you for everyone who has been praying for us and for all who have been continually supporting Tristan through your prayers. It really does mean so much to our family.

After being recently informed of some things I feel the need to clear the air a bit, even if only for my own piece of mind…

Very few people know of the real struggles we have been facing over the past two years. Tristan has been the most prominent but not by far our only struggle.  

To begin, let me apologize for anyone who feels I have not been the optimal friend or family member lately… I truly do not mean to be rude or appear self involved. But to explain let me start by stating the obvious-In April of 2010 our infant son was born with HALF A HEART, not to be mistaken or confused with a premature baby (although I understand and agree that is truly devastating and scary in its own right, but you eventually take your child home-and most often they go home healthy), or having a child with a scraped knee, a broken bone, or even one with a really bad cold/flu -my child has half a heart, he will always have only half a heart-until he needs a transplant and then he will have a transplanted heart! Unless your child is diagnosed with something that will be life threatening for the REST of their lives, please don’t compare what we are going through. So with that explanation I apologize for not taking the time to make a call to see how anyone’s day is going, again I am not intentionally being discourteous, but when Tristan was brought home I spent nearly every waking (and often even sleeping) hour taking care of him, in addition to taking care of Ella, Bri, and our home..In his first few months of life I had to not only monitor him every minute but he had to be fed hourly;  he also required medicine to be administered every 4 hrs. Then after his second heart surgery and the complications that arose after, I had to do meds every 2 hours plus check vitals along with everything else. Now after his third heart surgery I will admit his medication needs dwindled drastically but then I had to focus on his therapy. Cause at 7 ½ months he was only as advanced as a week old infant-literally. Not only did he get therapy daily (occupational 2x, physical 2x, speech, and nutrition)-and still does; but I did therapy myself with him three-four times a day for at least 30 minutes a day EVERYDAY; on top of that, to prevent yet another surgery, I spoon fed him 40 ounces of formula a day (to break it down - that’s equivalent to FIVE 8 oz glasses of milk, that had to be spooned into his mouth for months until he was able to finally start eating baby foods and we eventually taught him to drink from a straw, he never took a bottle. To accomplish this I had to feed him almost every 30 min and it took about 15 minutes to get him to take the amount of fluids he needed-so as far as how my time was spent, you do the math.  At night, instead of sleeping, I would monitor & watch him sleep and constantly get up just to make sure he was still breathing. I maybe got 3-4 hours of broken sleep a night for well over a year. So to be honest after being eternally exhausted and spending what time I wasn’t taking care of Tristan with either Ella or Bri or picking up the house (if I had enough energy to pick up) I really didn’t have time to make a quick call to see how you were doing. And frankly, now that things are much more calmed down with Tristan I have kind of assumed no one was really interested in talking to me because throughout all we were going through only ONE person called me regularly to check and see how we were doing. And we got a call maybe once a month by one or two others. I understand because we all lead busy lives, but please don’t make me feel guilty or like a bad person simply because I truly didn’t have time to talk but instead remember that obviously neither did you because although my phones receives calls, I never got any. The past two years have been loneliest I have ever had. We were in a new home, with no local friends, no church we belonged to, and a very sick child. I can count the number of visits people have made on two hands-and only 9 people (5 of them only came up once) ever visited us during our 4 hospital stays (which totaled over 110 days) -except for when T was first admitted. So the support hasn’t been rolling in. It has been hard and lonely to do it all ourselves but we have truly appreciated all the prayers so please don’t think we don’t...but it would be nice for someone to come over just to give a hug!

With that cleared up I would like to address something else. I am VERY aware that we live in an extremely nice home in an extremely nice neighborhood. It wasn’t an accident we chose this home. We loved it, we still do but the fact is we signed papers on the house BEFORE Tristan was born, BEFORE we knew about his heart, BEFORE I had to close my business and could no longer work, and BEFORE we realized we would lose close to $3000 per month in income! So when we got this house our being able to afford it was NOT an issue.  We are more aware than ANYONE how devastating our financial circumstances are, as we have struggled daily. I have NEVER discussed fully what we have been through but to make matters a little more understandable I will now. We are going to lose our home-unless some miracle happens. We have had to surrender two vehicles in order to make ends meet; I know some may ask well why not move, well put simply it isn’t that easy. Not only do we have to keep in mind how much it would cost us to move (until recently, although that just fell through- we had no way of coming up with a deposit and a first and last month’s rent -which is required anywhere) and although I won’t go into details, there are other considerations as well. But despite how difficult it has been we have made our house payments on time. We have not ONCE asked for anyone to give us money nor have we received any-except twice as explained below. We have not asked for assistance in any way to help us out whether with utilities or food or anything else, there have been NO fundraisers at any time for T’s or our benefit. Although we have never asked I don’t want to exclude the times we have received help: our wonderful neighbors provided meals for us for a few days after T’s second surgery and a church that knew about T sent a box of food over for his first Thanksgiving. For T’s first Christmas my dad’s work threw a party in his honor and raised some money. From that and with some money given by 2 friends on behalf of their Bunko group was the only way we afforded T’s 1st Christmas and gifts for our other children. We have also received a few donations from others, mostly people we have never met but each has been truly appreciated and has provided for our kids in some way.  All of these were unexpected and never imagined but we are eternally grateful for.

I am not angry or upset nor do we ever expect anything but I am hurt. So please don’t judge us because of circumstances that HAVE BEEN out of our control. We do not spend money frivolously as we don’t have any to spend. We don’t go on trips. We don’t go to concerts. Sean and I don’t go on dates nor go do costly outings with our kids. We can’t afford name brand or even off brand clothes for our kids. They get hand me downs and deals I find on craigslist. They do have tons of toys but remember I RAN A DAYCARE-so we had the toys before T was born.

Yes we did get extra money from a side job last year but regardless of what anyone thinks we spent the majority of it on past due bills and just trying to catch up, we did buy the kids’ Christmas-and we spent less this year than ever-aside from last year). We had to use some of it to get a vehicle because we knew we could no longer afford the one we had. We spent maybe 5% of it on unneeded things like getting take out a few times and getting some stuff to help get organized and then the rest went to taxes and groceries. We have spent more times in two years than I can count trying to juggle the bills we have with the income we don’t. I don’t always know how I am going to feed my children and many times I don’t eat so they can. But I don’t complain and I won’t. Because despite all odds and against medical reasoning, medical standards, and statistics our son is alive and healthy and our other kids are doing great as well. But I CAN hope for things to get better and for something to happen to turn things around, I think I have earned that hope!

So regardless of what you think you know and despite everything, we KNOW we are going to have to find alternate housing. I really don’t need anyone making me feel guilty because of the home we are in now. We KNOW we have to move but we don’t know HOW we are going to do it, we also KNOW that we are going to have to move into something smaller and we have no problem with that we are just trying to find something that will allow us some peace of mind and room to grow and pray fervently we can find something that we can stay in as our kids have been through more than enough. Briahnna has sacrificed as well and has earned the right herself to not have to wonder if she is going to have to leave her friends again.

After T’s upcoming surgery we can start considering me working by doing a small daycare and I am beyond anxious and excited... I want my kids to be able to play with friends and I want to be able to help provide financially for our family but that’s a few months out yet. So please don’t judge and assume all is well just simply because of where we live now and because I don’t complain and beg for money constantly.

Again I am not angry or upset but I am hurt. I have dedicated every year since Sean and I married but especially the last two years to my family.  It is not by accident that Tristan is doing so phenomenally well. We have worked really hard to get him where he is and to keep him healthy. To do that we don’t go on fun shopping sprees or even window shopping trips, T has never been to the mall. We don’t get to take a break and go to McD’s playland and play or any other play place, Tristan has never been to an indoor play park of any kind. I don’t just run to the store really quick if I need something, I wait for either Sean or Bri to get home and then I go if Sean can’t and I still need it, T has never been in a grocery store. He has never been in a church, he has never been to family functions, nor do we take him to school functions, we don’t risk his health just because I may be stir crazy or something sounds really fun.. I limit my own exposure as well because it just isn’t worth it to me/us to possibly bring something in and get T sick. I don’t judge or think ill of anyone who does do those things we just feel that it isn’t in T’s best interest to be exposed to those environments and risk his health and because of that he hasn’t had any major colds and hasn’t been hospitalized aside from his surgeries and caths. We have been very fortunate but we have also been VERY careful!

Now don’t misunderstand, we by no means live unhappily. We take walks, and we go to outdoor parks if the weather permits and there aren’t a lot of kids, we go to the zoo, or other outdoor activities. We try to do fun things as a family. During the summer there are tons of things we can do-the winter it is a bit harder. We do go to the farm occasionally as long as no one there has been sick. Ella is mostly limited to what is safe for T but Bri gets to do quite a lot with her school, church, and other stuff.

I am not writing this intending to make anyone feel badly or even to get sympathy. But after a couple of conversations I feel I needed to explain what our life has really been like. Not what those may assume it is like or even possibly been told its like.

I have been in constant tears and heartache especially the last couple days-well weeks really and this is the only way I could think of to clear the air. Whether anyone actually reads this or even cares is secondary. In fact, I am sure those that need to read it won’t but I have explained with hopefully a little more detail than we have given in the past what our life is like so that maybe some can understand….

Thank you all for your constant prayers for Tristan, please do not misunderstand and think they are unneeded, unappreciated, or unwanted because they truly mean the world to us!

We still continue to be grateful for all the blessings we have received. God has truly been with our family
Thanks again for any support ~Christy