We are all human

Last night I read a question posted on FB. It was posted from a group I am a member of (It's My Heart) and here it is:


Only someone who is personally dealing with or has dealt with CHD truly knows how it feels. Give insight to people on the outside. What are some things family/friends said or did that were helpful/not helpful, not to hear/hurtful, or any advice for someone wanting to help but doesn't know how.

Now I read through the comments and was somewhat surprised because the typical responses were "think before you speak", "never ask the the mother if she caused it", "don't tell us everything is going to be fine", etc. I wasn't surprised by the comments themselves but how I didn't feel that way or didn't experience it the same. I opted in not posting a comment because I felt I would offend folks.

First let me say that although many of my friends haven't directly experienced something similar however I feel that they all had their own experience with P's diagnosis because of their proximity to me. I sometimes think when you are in the bubble of the hospital that you think those around you aren't grieving along with you (outside of the hospital walls). If they are true friends they too are trying to figure out how to process the information. It affects friends because they care about you and your. If you take yourselves out of your bubble you realize your friends/ family are just trying to be helpful and never intentionally hurtful. If the shoe were on the other foot would you know what to say, how to behave at all times? I think not. You must remember that everyone has their heart in the right place even if they cannot directly relate to your situation.

Recently I had a friend who's child had to undergo elective minor surgery. My friend was filled with worry (as she should be, this is her story happening to her child) and when I tried to reassure her (as any good friend would do) she reminded me that "compared to what you went through this must seem like nothing". Which is true but not really. It's true for the obvious, my son's surgery was to save his life and his situation was dire but the not really stems from the fact that as a mother any surgery is scary for your child. I sometimes think some CHD parents can get wrapped up in their child's health that they simply cannot understand that every parent feels for their child and their health and would give anything to insure their health.

Now I am not naive, I do believe my experience puts me an elite group that only other CHD parents understand. I just don't think we need to be hard on our friends. They have our best interests at heart and if we don't take the time to have an open dialogue you shouldn't assume they know what to do, say or how to behave.

I have been lucky. For the most part everyone I have been in contact with has been great. And if any were offensive at one time so be it. I knew their heart was in the right place even if their approach was not the best. Everyone was respectful. And isn't that all we can really ask for?

She's FIVE!!!

Time to baby proof

Well baby #3 is ALL over the place. He is a crawling fool and leaves his trail of spit up for us to find him. So glad we opted not to replace our carpets yet and instead invested in a carpet cleaner. G brings out that sucker once a month and within 2 hours our carpet looks like a bad 70s shag with orange, green and yellow spots.

When we left for Disney last month P was just starting to sit unassisted. He conquered that while we were gone as well as started to move ever so forward on his hands and knees. Since then he is a master of sitting, crawling and pulling himself up on his knees. He is into EVERYTHING. Nothing is safe. His favorite toy: the hideous vertical blinds in our kitchen. He loves pulling on them. He also got a wonderful report from our first home-bound PT appointment (our one and only). He is in the 90 percentile for gross motor skills and he is officially written off of home PT. We are so thankful. We have OT coming this week and I suspect it will go just as well and all early interventions will cease. What a true blessing.

We have been enjoying much of the last 7 months with P home. We are shocked at how fast time is going with #3. It is amazing. It feels like everyday a new skill is learned. The older two are working with P to get his verbal skills rolling. They repeat every noise he makes and he responds by making a new noise. It makes for loud car rides but I love it. I love that my two oldest want to help P become more verbal.

Speaking of the other two...Ry is growing like a weed. It seems overnight she shot up. She is now as tall as her good friend S. Also she is growing her hair out which has completely changed her appearance. She looks like a big girl. I love her to pieces and can't believe she will be entering kindergarten next year.

E is talking up a storm. He's favorite phrase; No Way or Go Away. He is such an even tempered little boy who generally is a gender neutral player. He loves twirling in his sister's dress up gowns and playing with his trains and matchbox cars. I love how happy he is and his favorite place to go is home. He is not much for running around town and needing to constantly go, go, go as my oldest. He loves being home, playing with his toys or his sister's playdates.

I can't believe the holidays are almost upon us. I have started the shopping but now need to go in overdrive this week to get it done due to G's crazy schedule. I am so looking forward to Christmas as a family of five and that we get to spend it all together at home.

The BEST Parts of Me

Somewhere in the middle

These past 12 months have been extreme. I have never felt the weight of life and how precious it is as much as I have in the past year. This isn't only from my own experiences the last 12 months although there have been a lot: losing my mother-in-law, hubby spending time in the hospital, a diagnosis of a heart defect in my newborn son, losing my father-in-law while waiting for life saving surgery for my son, etc, etc, etc. Just as we would catch our breath some thing else would happen. Then there are the events outside of my family. Amazingly tragic events happening to people I know or know of...
The whole experience got me thinking about the downside of middle-age. Yes this is admitting that I am there, in the middle of what should be my life expectancy. Gone are the care free days of playing, giggling and learning my ABC's. The excitement stemming from getting to be a year older and that much closer to being a big person. The walks down the hallways of high school with friends, passing notes about what you're going to wear to the football game and getting the answers for the quiz for 4th period class. The carelessness of the college campus life bubble of discovering who you are and what you want to be when you grow up.
Nothing I ever imagined as a child, teen or college kid about being a grown up is exactly true. Sure I get to eat ice cream when ever I feel like it and I don't have to listen to my mother but now that I am here I think it would be nice to just go back.
Adulthood has unimaginable highs and incredible lows. The middle of your life you get the immense pleasure of bringing new life in and such pain to see life taken away.
I now understand the mid-life crisis. The want or need to capture your youth, to hold on to the carefree days and it sounds exquisite. However due to life experience there is really no way to go back and grab a hold of it. You know too much.
So here I sit in the middle watching with doe eyes at how precarious life really is...

Cracks

Yesterday was one of those days where the weight of P's first month weighs heavy on my heart. Nothing significant occured yesterday but for some reason my mind and heart went back to the hospital, the walks down the polka dot hallway and the enormousness of it all. It is difficult to shake and sets a thought process in motion that can take a few days to rid. I tend to replay certain events in my mind but most striking is the walk going in to see my son. I am not sure why that is the event that replays in my mind, of me staring down at those gigantic blue polka dots.
Over the last several months during these heavy days, I think about the term "Heart Mom" a lot. I hate labels. I hate having this label. I don't want this label and I don't want my son to have it either. And my reasons for not wanting it really has nothing to do with not embracing his once broken heart or his rocky first month. That I can handle. When I think of the term heart mom I think of all the wonderful moms who have turned their tragedy into something positive; who have paid it forward. That is the weight I am not sure I am able to bare at this time.
A couple of months ago I was introduced to a mom who recently found out her son had a CHD. We chatted on the phone and afterward I felt exhausted and realized I wasn't in the right space to offer support, that in fact I was still grieving my own situation. I felt horrible because I don't think I was a help at all and in fact may have made this mom confused or more frightened. This was never my intent when I got the courage to speak to her. However it made me doubt my ability to one day be a true "Heart Mom".
Since the time I spoke to her the dreaded label has faded and I've realized how I wear the label will be determined by me. The definition I had in my head was incorrect. Parents who have children with CHD are Heart Parents but those among us who offer support, pay it forward and strive to give a voice to this community are Heart Warriors.
I am not a Heart Warrior yet and I am not sure if I will ever be... but I am so very thankful and appreciate of those who have the ability to be one.

6 months

Our littlest had his 6 month well visit today and he is doing great. He weighed in at 16 lbs 3 oz (25%) and was 27 1/2 inches long (75%). He is long and lean but there is no concern for the differences in the percentiles especially since the oldest 2 aren't chunky monkeys themselves.
Everything else checked out well developmentally and he appears on track.