The truth about this life
Landen was born June 20, 2016. This is the day our journey began and our lives changed forever.
When I look at pictures from that day I wish I could give my old self a hug and tell her that it’s going to be a long tough road but it will be worth it and you will get through this. I would tell myself to not doubt myself so much and to ask for more help. I would remind myself that it’s okay to break down and have your moments; you can’t be strong all the time. And lastly I would tell myself that I am doing the best that I can and that’s all I can do.
So I here I sit almost 3 years later thinking about the past 3 years with Landen. Sometimes I analyze decisions and things we did too much wondering if we would have had a different outcome. I’ve spent far too much time trying to relive my pregnancy trying to pinpoint what I did differently than my first only to come to realization every time that there was literally nothing I could have done differently. Then I start feeling this guilt for thinking about what I could’ve done different so Landen didn’t have CoffinSirisSyndrome. I don’t want to change Landen. I just want life to be better for him. I want him to experience all the things his sister will and to go and do all the things all the other kids do. But I know that will not be the case. Has I watch his older sister grow up and become more independent every day; it hits me hard that Landen will always be dependent on us. He will not experience the growing up and leaving home, going out with friends, doing everything for himself. He will miss all of that. But here’s the thing, Landen doesn’t know he’s going to miss all of that. I know what he will miss out on but he doesn’t know any other life than the one he has. He thinks being feed by a feeding tube, taking medication every day, spending countless hours in therapy and at doctor’s appointments is a normal life. That’s the only life that he’s ever known. Has a mother this breaks my heart because it’s not fair but in another sense it calms my heart knowing that he knows no other life and we can make it the best we can for him. He’s happy. He’s the happiest little boy I’ve ever known and I really mean that. If I’m ever having a bad day all I need is one of Landen’s sloppy kisses, a hug and his big old smile and I can’t help but turn my mood around. He finds joy in everything and it doesn’t take much to make him happy. Even when he’s sick, which is a lot, he’s still happy.
This life is hard. If given a choice it would not be a life that one would choose to live and that is hard to say. I have been told many times “You’re so strong, I could never do what you do”. Sometimes when I hear that I feel a little ego boost but most times I feel like a fake. You see I used to be that person that would look at other moms who had a child with a medical condition and think “Wow they are super woman, I could never do that” Knowing what I know now I wish I could go back and say and do what those moms really needed. What we really need is a big hug and someone to listen to us. We need to be able to show our weaknesses and break down. We are only human; we possess no special super powers. We require sleep but do not get much, we need proper nutrition but our schedules don’t always allow this, we need breaks and rest but these come far and few between, and we need to lower our stress level but that’s next to impossible when you have a child with a medical condition. We are limited on who can watch our child so we can get a little break here and there. We feel guilty asking people to watch our child because it is more of a job then watching a typical child and in our case you need training to watch our child due to a feeding tube, medications, and other health issues. So here comes the next thing about this life. It is a very lonely and isolating life. My social life is next to nothing because there are certain things I can’t take my child to do, limit on care options and about 90% of the time I have to end up cancelling the plans anyways because my child gets sick. I spend most of my time trying to balance my work and home life and being a care giver and parent. There are days that I can’t help but envy those families that seem so normal with their healthy children that can decide on a whim to go to the park or take a trip somewhere. Even just to make plans to go out to eat or have a play date. These are all things that we took for granted before Landen was born and have now become a thing of the past for us. Doing anything requires planning, we need to plan around his feeding schedule medications, and weather and making sure we have all the things with that we need. Somedays it’s just easier to stay home. But then I have to stop envying those families because the more time I spend looking at something that we will never have the more depressed I get about our life. So instead I turn and focus on our family and other families like us and I look for things we can do and moments we can enjoy. I notice my mood improves and I feel more optimistic.
Has you can tell this life can be very lonely and frustrating but it can also be filled with love and wonderful things. It’s all about how you approach it and handle it. That has taken me almost all of these 3 years to learn. It has been a big learning curve for me. I’ve always been a planner, organizer, and perfectionist; having a child like Landen really tested me and still continues to test me every day. I’ve had to change my ways with a lot of things. At times I feel like I’m a completely different person then I was before, when I look at pictures of me from 5 years ago I feel like I don’t even know that girl anymore. Some of the changes I’ve embraced and some I don’t like but they come with this life. Like most families living with this similar situation you are a care giver and a parent at the same time. There are times when the parent in you wants to break down and cry while you watch your child be put through yet another medical procedure but you also know at that time your child can’t see that so instead you learn to become a little bit harder. You learn to suppress those emotions until you are out of sight of your child so that you can sit there holding their hand, smiling and telling them everything will be ok.
I was never interested in the medical field growing up and I actually thought I could never be a doctor or a nurse. Oh how things change. I have become has much has an expert on my sons rare condition has I can, there are times the doctors ask me questions about it. I have researched everything I can and I can pronounce all those medical terms that I always thought were impossible. I am able to do all my sons basic medical care for him at home, even changing his feeding tube or replacing a broken one.
The hardest thing about this life is always the unknown. Landen’s syndrome is very rare. There are currently only 200 people in the whole world with it. We really don’t know what to expect for the future or how long we will have Landen with us. It’s scary to think about but a reality we have to think about. I’m still trying to learn to navigate my way through this. There are days when I feel like I have it all together and I can handle this and then there are days when I feel like I can’t bare this weight anymore and I’m going to break down. I know its normal how I feel. Many parents with a child with medical condition have PTSD. It is very stressful and scary and all these other emotions. I think about all the times things were really scary with Landen, times when we didn’t know if he could push through another sickness or recover from a surgery. Every day with Landen is a gift and he has taught us to appreciate life more. I thank God every day that he’s still with us and I pray that he will be for a long time.
I’m not writing this for sympathy but more for myself and the other moms out there like me. So often we spend our time talking about our child and their condition to raise awareness and educate. So often we forget about ourselves because we are whole heartily poured into our child’s life; we are their everything. When people stop us to ask how things are going we feel we should talk about our child but really only the good things because most people aren’t prepared to hear how terrible things can get. So we tell you what new things they are doing, things they’ve been working on or accomplished. We don’t tell you how we cried the other day because yet another diagnosis was added to the already long list, we don’t tell you all the real emotions and feelings raging through us or how scared and weak we really feel at times. We feel guilty, weak and maybe even a little ashamed to admit these things to people or talk about the not so good stuff. Although our situation is tough we feel has if we aren’t allowed to complain about it. I can complain about my typical child doing something and people chime in and agree or tell a similar story but if I say something about my son it’s usually met with a look of sympathy or some statement about how strong I am and we will get through this. So not just for me but for all the moms like me I ask that if your friends, family or just acquaintances that when you ask the mom how things are going you really mean it and you let them know that you are truly there for them and you want to hear it all. You want to hear the good with the bad and you will listen with no judgement. You still invite them out to do things, make an effort to talk to them even if it’s just a text and most of all be there for support. These seem like such simple things that most of us take for granted but they are huge for a mom like me. #Parenting #CoffinSirisSyndrome #RareDisease #MentalHealth #Depression