So I recently stumbled upon a question that was posed for special needs parents. The question read, "If you are a parent of a child with special needs, what is one thing you wish your family and friends knew about your life?"
Wow, what a question!
I was very fascinated and interested in the different responses, I actually read through all 170 of them. I could relate to so many of them and some were truly good advice. I decided to compile of list of some of the answers that were true for us and share them. It was encouraging to see so many of the same shared feelings. So here it goes:
1. First and foremost, I don't like hearing "I don't know how you do it". I am a parent, just like so many others out there. I am no saint or superhero. I just try to do everything I can for my child and want to give her the best possible life. Isn't that what ANY parent would do? Her needs just happen to be different but I still try to meet them as best as I can. Yes it's hard, but parenting in general is hard, it all comes with struggles of different kinds. So know that I am a parent like you, learning as I go!
2. Don't feel bad for us! This is so true because we don't feel bad for us and you shouldn't too! I have seen that "pity" look a few too many times and every time I see it, I hate it. Caroline is a beautiful blessing and there is no reason to feel sorry for us. We have made some adjustments and yes it's not the "normal" life but it is our life and it is beautiful! It is worth smiling about, not feeling bad for us!
3. Please, please do not ask "What caused it?"...ugh. I really hate this question and am actually surprised at how many times I have had to stumble my way through an answer for it. I spent a lot of time, I mean A LOT of time feeling guilty and trying so desperately to figure out how this could happen, how our perfect child was diagnosed with SB and what I did to cause it. I blamed myself for a very long time (most of my pregnancy and a lot of the first year...). What if I had eaten better? What if I had taken the extra folic acid, more than the regular prenatal vitamins? What if I hadn't come down with a terrible cold when I first got pregnant? What if I hadn't of pushed myself and made myself relax and take it easy more when I was pregnant? It is all "What if" questions and I could go on and on about any little thing that may have (or may not have) caused it. But, bottom line is, I will never know what caused it and quite frankly, it doesn't matter. I have had to learn to accept the way things are and figure out how to navigate from there. There is a lot of blame that comes along with having a child with special needs, from both parents. I get that you want an answer, an explanation. We all like to have explanations for the way things are because then we feel like we are in control and can fix it. But, some things aren't meant to be fixed. Some things are just meant to be, however they are. So please be considerate of asking 'what caused it". I welcome you to ask about Spina Bifida and I will be happy to tell you all that I know (trust me, I have done quite a bit of research on it!) if you are interested in learning more about it. But, don't focus on the past, focus on the future.
4. I worry, a lot. As parents, we all have worries about our children. We worry if they are eating enough or sleeping enough or if they weigh enough or if they are getting sick. We worry about their dry skin or flaky scalp and everything else. We worry. That's what parents do. But, I worry for all of those plus more. I worry about short term things but I also worry about lifetime things. I worry about her life and what she will be able to do. I worry about what will happen if something happens to me or Jeremy, who will take care of her, who is capable of taking care of her. I worry about hard decisions I know we will have to make regarding her health. I worry we are not doing enough, could be doing more. I worry about her going to school and making friends and adaptive equipment she will need throughout her life. I worry about her shunt malfunctioning and her cognitive abilities. I worry what her future will be like. I worry ALL THE TIME. I am thankful that I have Jeremy, to talk with about these worries and he truly keeps me grounded. He makes me focus on the good...and the "right now". I am also thankful to talk with my parents, who have "been there, done that" and can relate. But I keep these worries, all of them, and try to deal with them. But know that even if I don't show it or can put a smile on, I have a lot of worrying going on in my mind. Which leads me to number 5.
5. We need you. Yes, we need social interaction just as much as any other parent. We need our friends and family. We want to feel "normal" too, even if it is just for a little bit. We need someone to vent to, to talk to, to laugh with. We need to keep ourselves involved in other relationships to keep us mentally healthy. So please don't be scared that you may not know what to say or what to talk about. I don't need to talk about my child's needs or differences....I can talk about poopy diapers and sleepless nights. Heck, I can talk about weather or work or anything else. But sometimes we just need you.
6. We need a break. All parents need breaks and I am true believer that they need to happen often! You have to keep your sanity so you can give everything you have to your child. You need those timeouts and so do we. We are not able, though, to just call up anyone to babysit because Caroline needs extra care. We only have a handful of people (our parents and Jeremy's grandparents) who can keep Caroline. We feel comfortable with them because they know Caroline, what is normal for her. They know about her gtube, feeds, shunt, and her low muscle tone. They know the positions to put her in and how she functions. So, because we only have a few people that are able to watch her, we cherish our break time A LOT. So if you see us out, without Caroline, know that we are taking care of ourselves, we are taking a break and we do not feel guilty about it. We know she is in good hands and we need that time to recharge. Jeremy and I have also become pretty good about taking turns keeping Caroline while the other one goes out because we need to allow ourselves that time (a couple times a week!), even if it means walking around the grocery store by ourselves! So please don't judge us for being away from our child. Everyone deserves to take a break!
7. Please do not ask what our child will be able to do. Trust me, if I could predict the future, I would be able to quit my job and make a lot of money. But I can't, and neither can doctors. So while we can guess and think about it, we do not know what Caroline's life will be like. We don't know if she will walk or talk or eat or what her cognitive development will be and we are OK with that. Of course I would love to know all of these things so I could prepare myself but I can't. And I am afraid if I say "She won't be able to walk" then I am putting that idea in my head and that is setting her up for failure. I have to believe she will do everything she can and I have to encourage her along the way. I need to have the right mindset of believing in her so she can believe in herself. Her neurosurgeon told us the most important piece of advice we have heard - "Don't let anyone set a limitation on her". This statement has meant so much because only Caroline will show us what she can do and she will do that in her own time. So please do not ask us "if she will be able to walk" or "if she will be able to talk" because I cannot answer those questions and honestly, it doesn't matter! I want you to be OK with not knowing, just like we are! Focus on encouraging her to do all that she can!
8. Lastly, we cannot thank you enough. Seriously, I have felt this way since we found out about Caroline having SB. We have been overwhelmed with the love and support shown to us from so many...from family and friends, people we hardly even talk to, sometimes people we don't even know. I just want you to know, that even if I don't respond or reply or show that I notice, please know that I see and hear all the wonderful things you have said to us. Please know that we could not do this without the love and support from you. Caroline has been blessed with many loving people in her life, to cheer her on and watch her grow. We are thankful to share this journey with you and know that all of your words and gestures holds a special place in our hearts. You have helped make our love for Caroline even bigger and brighter!
