Motherhood

When I think back to when we were planning to have our son I have come to realize that what you think will happen and what actually happens when you become a Mom are 2 completely different things.  I believe this to be because we as Moms don't talk about it.  We don't talk about the bad, we don't complain because if we complain then we're not good Moms because it's supposed to be love and lollipops and rainbows to be a Mom.  I am here to say it's ok to complain, telling your friends what to expect is a good thing and it's time we all open up and really truly prepare those for what is going to come so that their transition is easier.  I know if someone had told me the truth then I would have felt less Mommy guilt.  Becoming a Mom is the most amazing thing and you really can't imagine the love that happens for the baby that grew in your belly and is now reliant on you.  With the amazing comes a complete change in your life and the sooner you go with it and stop fighting then the happier you will be.  Your body looks completely different and it'll take a long time for it to even resemble what it used to be.  Embrace this as having a child is amazing and if you're happy then you'll start looking at yourself the way you used to.  Forget lavish holidays, going out whenever you want, not smelling like puke all the time and now you actually have to save for those concert tickets and the babysitter to watch the little one.  All these things take planning now as just to get out of the house with a baby is a job in itself.  Lack of sleep will make you wonder what life was like without a pot of coffee in the morning and sometimes because of it you'll have what I call not a stellar Mommy day.  Basically you're a little off your game, you are understanding how people shake their children though u will never ever ever do so but u understand and u may have a moment to not be so proud of yourself.  Guess what, this is normal, it's ok.  As long as you don't hurt your child and you are giving the best that you could possibly give at that moment in time then you are a great mother!!  Recognizing bad days makes you a great mother, complaining to someone and thinking OMG what have I done, how could I have changed my life this drastically is completely normal as well especially after the first 2 weeks up to 3 months as that's when colic may kick in, your baby sleeps less and that god forsaken 6 week growth spurt has you wondering if you'll ever get your boobs back and when that 7/11 of your chest will close.  It's fine to feel this way, it's fine to question and it's fine to complain to a girlfriend of the hard things that you have to deal with every day.  Diapers, bottles, breast feeding, changing, dreaded baths, dang car seats, colic, stomach problems, colds, flues, huge diaper bags, changes of clothes for both of you, screaming in the car, embarrassing you in public, crying (this can be yourself as well) are all a part of a Mothers daily life.  You're always on what I call high alert so that even if the baby is sleeping and you're in the shower trying to feel human you are still stressing and listening hoping that they stay asleep and you can get 20 mins to yourself.  I remember with Adam he had a day where he cried for 6 hours and well I cried for the last 4 with him and kept going through the motions trying to find relief for him.  That's when I called my girlfriend with the big boobs and said I need your help, get in a cab asap and I will pay for it.  Thankfully a different friend with 2 older boys called me and heard his cry and helped me out while I waited.  She told me to put him down on his change table as it was the only place he wouldn't cry and sit for a couple minutes and that since his cry seems to be one of pain or discomfort because nothing else has worked that it's ok to give him a dose of Tylenol.  I wouldn't put up with a headache or gut ache without trying to get relief so why should I allow my new born to suffer.  Thankfully my friend showed up, took Adam on her giant soft chest and let his toes hang off, he fell asleep within a few minutes and all was well.  Asking for help as a Mom is not a weakness and does not make you less of a Mom, it takes a community to raise a child so don't feel bad if you need to ask to be rescued every now again.

Worst Day of My Life

So a lot has gone on in the past 3 months that could make any Mother's head spin.  6 months ago was his night stay at the hospital for a virus and he needed oxygen where they heard his "heart murmur" 3 months ago was his first appointment with the Pediatric Cardiologist to find out something is wrong with the right side of my sons heart and there needed to be more tests.  You'd think that would be the worst day but it certainly is not.  One week later was his sedated echo which took far too long to get him to sleep and told us that we had a very very sick little boy.  He had a big hole and most likely Pulmonary Hypertension.  Still not the worst day.  One week later they were putting Adam under, cutting small incisions in his legs and putting catheters into his heart and lungs.  It took hours, I paced and felt soo sick waiting to hear that my baby was ok and what the outcome for him looked like.  It was confirmed that he has Pulmonary Arterial Hypertension and a Septal Defect too large to close with a catheter so he will need open heart surgery and only time will tell how he does on medication, what his quality of life will be and if we can ensure he has a healthy life.  One would think that would take the cake, and it still makes me queasy to think about but the worst day of my life was the other day.  My Monkey of a Son decided he wasn't going to listen at all on Friday and I was at my wits end.  I sent him up to his room to go play with his friend and 2 minutes later the huge crash happened.  I have baby proofed everything, or so I thought, all the doors were closed and his room is where they are allowed to play when upstairs.  I jump up and run into his room to find him trapped straight back under his dresser..... all I could say was oh my god which cause my husband to go from a saunter to an all out run to get to his room.  His dresser weighs at least twice as much as he does and he was pinned right up to his chin.  Thankfully my husband was there and I was on the floor talking to him because as my husband lifted the dresser off of him I saw that both his ankles were trapped in between the bottom drawers, I had to yell for him to stop and try and get him unlodged.  If it was just one of us home we never would have known about his ankles and he would have probably gotten a very bad injury.  He didn't move for about 5 mins, all curled up screaming.  It was terrifying and we didn't know what to do, all we knew was that if we moved him and he was really hurt we could make it worse.  He then started to get up and we knew that his back and neck were ok.  He climbed into my arms and then not long after walked away.  He seemed dazed because his lamp hit his head so I brought him to the ER.  Thankfully he sustained no injuries what so ever, amazing.  I realized then that at any point my son can be taken from me just like that and it scared me sooooo bad.  Now everything is bracketed to the wall and that won't ever happen again.  I came to realise that he is a fighter, not even a dresser full of clothes hurt him and that his disease won't take over so easily.

A Day

So after attempting to deprogram my darling son from still acting like he's on holidays, not sleeping so great and taking in exuberant amounts of coffee in my Jack the Pumpkin Mug to make sure I get all the laundry done and the house upkept for us as well as the other toddler I watch Adam decided to be very kind.  My Peanut with his amazing thought process inaverdently decided to let me know that his room needed to be vacuumed.... his incredible brain and big heart decided that after I fed Ponyo his fish that his ride on horse needed to be fed to.  I had put it up high though apparently not high enough for Mr Clever to use a toy to leverage himself and get the pouch.  I come walking into his room with his medication spiked in his chocolate milk and his Lacteeze pill to take it and there is fish flakes all over the floor and in his horses mouth..... I gasp and he looks at me and says Ponyo Eat and points at his wall mounted fish tank and then points to his horse, he eat and tries to give him more food and pet him.  All I can do at this point is laugh because it is amazing to me everything that he has put together and how big his heart is that he wants to feed his big plastic horse.  I give him his pill and his milk and he tried to feed the horse those too until I told him it was very nice to share but those are for Adam.  Each day when I watch him he does something so different and amazing that I really wonder what he's going to be when he grows up.  All I know is that we will make it through everything we need to and whatever he chooses to do in life he's going to be great at it.  With a big heart like his, in which it literally is as well, he's gonna be a wonderful man and I am already so proud of what my 2 year old can do

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.