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A open letter to Katie

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Katie,

Today marks the 2nd anniversary of you coming home from your 225 day stay in NICU and I wanted to take a moment today to write a letter to you that I hope I expand on every year until you’re old enough to give them all to you.

I hope I have been a good mom to you and if I have messed up hopefully it was nothing major and just small things like making you mad because I wouldn’t let you go to a party or something like that. I really hope I do right by you and the reason I’m writing this letter is to tell you how much I love you and how proud I am of you. By now you’ve probably heard many stories about your NICU stay and the struggles during your baby/toddler years and maybe you have some memories of outpatient therapists or specialists or maybe you don’t. Right now I’m not sure where the road is leading us but I do know I am so proud of everything you do.

I’ve loved you and been proud of you since the day you were born and I know I definitely loved you from the moment I knew of your existence. I’m sure we won’t always see eye to eye but please know that every moment of your life I have cherished. You have always been wanted and always been loved. I will always be proud of you and love you no matter what. You have been through so much at such a young age and in such a short time and I can’t imagine loving anyone as much as I love you. Every new thing you do thrills me even if it’s something as simple as a smile or one step forward or one word spoken. We are incredibly lucky to have such an amazing daughter and I don’t know right now who you are going to turn out to be or where your road in life will take you but I do know no matter what, I will always love you for who you are. Your dad jokes he will disown you if you go to OSU but don’t worry he’s just joking because you’re amazing and you have both of us wrapped around your finger.

I’m really hoping that we don’t end up with a pony in the backyard and I hope we give you the space and room you need to grow and thrive and find yourself. I really hope I’m not too overprotective and let you be you and not wrap you up in bubble wrap to keep you safe and I really hope you are proud of me too. Because you are literally the best thing I have ever done in my entire life and I really really hope I haven’t let you down. I love you so much Katie and I’m sure I don’t show it enough but I hope I tell you how much I love you and how proud I am of who you have grown into. Katie, you have made my life such a joy and I hope I do the same for you in return.

I hope to keep this up writing you letters every year on this day and you already know about the many holiday cards I’ve written in by now and of course the hand written journals that talk about your childhood. You have your blanket over your head right now so I need to go take that off your head. I love you Katie and always will.

 

love,

Mom

I was doing so well

My god do I ever hate depression. I was doing so well for so long, I was off the depression meds for over a year then out of nowhere “hello darkness my old friend”. So now I’m waiting the 4-6 weeks for it to fully kick in and just having a hell of a day. It probably doesn’t help that I’ve forgotten to take my PTSD medication for the last few days. Nothing bad has happened. My daughter is being an absolute angel, the dog isn’t being annoying, and my husband is fine doing what he normally does playing video games. However I can just feel the anger and hate flow right out around me just coloring an otherwise beautiful spring day to just grey. If I had to sum up how I feel right at the moment it would be, I hate everything and everyone.

My husband tries to cheer me up and I just want to punch him in the face but then I also now if he didn’t try to cheer me up I’d still want to punch him in the face. By the way I have never punched anyone in the face, thought about it oh god yeah actually done it never. Currently the only person I don’t personally hate, is our daughter. Which I guess is progress but everyone else…..I want to give the middle finger salute. Whatever, fuck this day and fuck everything else too. Tomorrow will be another day and blah blah blah.

 

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Depression and PTSD definitely do not mix well….Fuck the Emperor as well! 

Looking towards tomorrow

It’s three days after the most volatile election in my lifetime. We all saw something that most of us haven’t seen in our lifetime. A election filled with hate and negativity. Now I know that in every election there is always mud throwing contests but this one was different on many fundamental levels. We finally have concrete proof on how divide a country we live in.

One half of the nation is against the other half and that makes me sad. Not because who was elected but what it means for us as a country. How did we get to this point where we cannot have a civil conversation about politics? What does it say about us as a nation where everyone wants to point their fingers at another and blame whomever does not agree with us? But mainly how do we fix this?

I don’t know the right answers and I’m sure many feel the same way. No matter what side of the argument you are on and I think we can all agree we need to start uniting instead of furthering the divide that is happening in our country. So how about starting today we start loving one another instead of fighting. Compromising with each other rather than blocking each other at every turn. I believe in us, I believe this is an attainable task and I believe in the future of this country, not only for me but for the next generations. What we do today will echo throughout history and lets leave the future a more beautiful place for our descendants. They deserve a better more united world and we should start today to make sure that is exactly what they get.

I hope you all have a lovely weekend and just remember love is always the answer.

 

Inside the mind of one Trach Mom

I think one of the hardest thing about having a baby or child on a ventilator is the jealously and envy we have when we see “normal” children. The kids that were full term and had no issues. In the trach parent community we all have friends with kids and we see them either on Facebook or in real life hitting all their milestones with no problem and I know I find that hard to watch. That doesn’t mean I hate their babies or have resentment towards them just that I’m envious of a life that I most likely will never get to live. Katie most likely will be my only child, so I most likely will never have the joy of carrying to full term. To be able to breast feed my child, watch them hit their milestones on time or before time. There is so much we have missed because she was born so damn early. We missed out on a normal babyhood and sometimes that breaks my heart. I got to see my nephew when he was a little under 9 months and this kid is crawling all over the place while I’m struggling to get her to just creep around to get to crawling. He pulls himself up into a standing position (which btw is 3 months ahead of time the little cute thing). He is currently taking his first steps at 10 months old which Katie isn’t doing yet. She’s so behind because of 7.5 months of being in NICU without being able to do anything because either she was sick or too little to do any development stuff. We didn’t even get to start doing any OT/PT until she was 6 months old 3 months corrected. I know she’ll get there but I have to say looking at everyone else’s children makes me feel jealous of their child and of their life.
Having said that I am extremely proud of Katie’s progress, she has come so far from where she was. She’s healthier, happier, and absolutely amazing. This little less than 20 pounder has gone through 5 surgeries, 6 different procedures and has come close to not making it a few times during the NICU stay but she’s still here. That’s why I believe she is my hero. The theme for her 2nd birthday party is Supergirl which I find fitting because she really is a super girl. She won’t have the trach removed by her birthday but she’ll be off the vent off 24/7 and that will be absolutely awesome. I can’t wait to just be able to hold her and be with her without worrying about having to carry all the machinery with us anymore. I want her to be like everyone else and just have a life that is full of joy and not so filled with doctor’s appointments.
This is the most difficult road I’ve ever traveled and I’m looking forward to getting to the end of the road and getting to just be normal for the first time in years. In the last four years we have lost a son that we badly wanted at 5 months pregnant and then the years of depression and then followed by the pregnancy with Katie and the cerclage placed, hoping an praying that she would stay inside only to have her be born at 26 weeks, the ensuing 225 days in the NICU, the trach and g-tube place, her coming home, the nurses and the privacy you lose with having nurses. The appointments, the stress, the trying to keep yourself together. Sometimes it’s just too much and there are times where I would love nothing better than to curl up in a ball and just cry. But then I pick myself up again and go about my day. Do the best I can possibly do for my little girl because this process definitely sucks but she’s what matters. One day we will get to have a normal life and that day is worth waiting for. She was worth waiting for.

 

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Tupperware is the shit.

Mistakes

We all make mistakes. I’ve made plenty in my 32 years on this planet. Tiny mistakes, moderate mistakes and luckily only a few huge mistakes. I look back sometimes at the things I have done in my past and feel without those mistakes I wouldn’t be the person I am today. Do I regret the mistakes I’ve made? Sure, who doesn’t but it does no good to constantly dwell on the mistakes I’ve made. Instead I choose to occasionally look back and remind myself not to make the same mistakes again.

I don’t think of myself as a bad person but I’ve definitely have done bad things in my life. Nothing like murder or terrible like that but still I’m not perfect. Honestly I don’t want to be perfect. I don’t think it’s possible to be perfect and I’m not going to strive ever to be perfect. I just want to be the best person I can be.

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