Differences

When travelling back from our family vacation I saw a huge difference between my husband and I.  To me a family vacation is travelling during the day, making stops and seeing things, chatting, singing and lots and lots of pictures.  To my husband travelling is driving all night long so that our 2 year old son is asleep so he can get there as soon as possible and not enjoy the ride, lol.  For me the all night long thing sucks because I usually don't get much sleep during the 10 hour drive to family and then that morning when we arrive I have to take care of said 2 year old who is wired for sound for sitting for well 10 hours.  Hubby is of course in slumber land enjoying himself.  As we made our way home during the day, with a happy son more that 90% of the time, sleeping another 8% of the time and that slight 2% overcast of emotions my hubby made the comment that he could have saved at least an hour if we were all asleep and that's what mattered..... luckily for his health he was joking but that's when the light went off in my head.  Our versions of family trips, family time and marriage are so vastly different and need to be discussed.  Adam has so much to fight and live for and we need to make sure that we are both on the same path, even if it's on each side of the road. 

Holidays

Away we have gone on Holidays and it's kind of amazing how much extra work it is.  We have to make sure we have milk for the road with all the medicine pre measured in sippy's.  He needs pills to take milk, getting his 2 year molars so there is the medicine for that, his Syldenafil and his nasal spray.... That's not including the barage of toys needed to make it there with a sound mind, lol.  I think it's time to invest in a portable DVD player so that our sanity can remain in tact, lol.  It's been great being with the Grandparents, it's been a long time since I've had this kind of help.  The lack of diaper duty has been a major pleasure, just that alone is the worth the holiday and the 11 hour drive.  The lack of sleep with Adam being stressed from travel and being in a new place has been really hard to handle, but the happiness of him being with family is worth that as well.  As a parent there are so many sacrifices made for the happiness of a child that are sooooo worth it in the long run.  While here I came to a major realization.  While most Moms don't want their children to grow up and want them to stay little for forever, while my outlook is that I am fighting for the opposite cause.  Every day I fight for my son to grow up, reach each milestone and have a long, healthy life.  I won't cry when he gets older and go to school, I am so excited for these things because that means he has lived more days and will keep going.  In my mind I will do everything I can for him to be a contributing part of society because he has to grow up.  He promised me when he was born that he would give me grand children so I am holding him to that.  While here my husband and I celebrated our 4 years wedding anniversary.  It was nice to have some time together, but it wasn't the same as any others.  It's hard because the stresses of everything have really taken their toll on our marriage and we're now trying to get it back.  It's sad to me that my 4 year anniversary didn't seem to matter too much this year, though I do have hope that our 5 year will mean something to me.  Having children changes everything in a marriage whether good or bad.  Learning your child will fight for their life for the rest of their life turns a marriage upside down if one isn't ready to be there. 

Stresses of life

It's amazing how the simple things in life have changed in this house.  Yes Adam runs around like any other 2 year old, yes he's full of beans and chatting up a storm and looks normal, yet there I am having to research all his food, if he needs oxygen to fly, give him medication at least 4 times a day, make sure he isn't getting clots in his legs, checking to make sure he doesn't get swollen as that's a sign of heart failure, slowing him down when he starts to cough.... It's a never ending cycle of life in this house.  I don't know what will happen for Pre School in a year as he will need at least one type of medication while he is there.  It's stressful to think that his life is going to be different all because of the way he was born.  He looks so amazing.  I am truly thankful that it is today as 20 years ago he may live 3 years as there were no medications available for his disease.  Now there is so much more.  Family life here is really tough, I've moved from all friends and family and am here alone with Adam and my husband who is never really around.  Things are really rough there too so I'm not sure what direction to go in.  All I know is that I will do whatever I can to make sure that my son grows up strong and is a contributing part of society.

Overwhelmed

OK so this is my first blog....
There is so much going on in my life that it is really kind of crazy.  I have an amazing 2 year old son who has been stricken with Idiopathic Pulmonary Arterial Hypertension as well as has a very large Atrial Septal Defect which isn't uncommon with his disease.  Having it as large as it is and having the pressures he has at his age on the other hand isn't common.  It's really hard knowing that even though Adam looks so healthy on the outside he's a time bomb on the inside.  I am so thankful we have found it now as apposed to even another year down the road as it is very agressive in children.  I am also thankful that there are so many options now as apposed to 20 years ago.  20 years ago he'd be lucky to live to the age of 5 as the only option was transplantation.... so scary to think of.  We still don't know the cause so there are still a lot of questions to be answered.  He takes medication 4 times a day and it seems to be helping, which is music to my ears!!  There are other medical options down the road too and hopefully one day they will have a cure in his lifetime.  Instead of drowing in my sorrows I have decided to use my pain to helping others in need.  When I sat in Adam's hospital room after his catheterization I realized how many Moms have put their lives on hold to take care of their child.  I know the Dads are hurting too and are working even harder so the Moms can be there, but they get a chance to escape for a bit.  The Moms are there watching nervously, learning all about medications, keeping the children in bed and entertained all the while not worrying about themselves.  After speaking with one Mom it was amazing the strength that comes out of both the child and Mother when they are so connected.  I looked for a website to be able to connect with other Moms who have sick children and I came up empty handed and that is when the thought came across my mind that other Moms may be doing the same thing.  That's when I decided to create and launch my own site to try and help all other Moms who need the support as well.  I know the Dads may or may not be trying, ultimately in the end though it's the Moms who tend to be alone with the child with the disease and it makes it hard.  If you need support like I do then go to http://www.momscare4moms.com/ and become a forum member.  There is already another Moms on their who is having a very rough journey and the site has been helping her, so we are there so you are not alone.