An amazing Mother that I know, who has been through so much, shared this link on her Facebook page:
7 Things You Don't Know About a Special Needs Parent
The Mother in this article, I have never met, but I can relate to what she has written. Though our situations are completely different in so many ways, the emotions are very much the same. I thought that I would follow it with the same 7 feelings that I have about our Lilybear, and all she's been through. The only omission that I will make is for number 5 on her article, as I have had to say to myself over and over again that at least Lilybear is healthy! But I have met many families of sick children, whom my heart aches for every day. I can understand her wishes, and respect her feelings on this topic. I will change number 5 to another statement that I wish people would stop saying to me.
1. I am tired.
I am so tired. Words sometimes even cannot express how tired I am. We have been through a lot up to this point with Lilybear, and are in a better place now than where we started, but the tiredness remains. When I think back to the past 10.5 months, back to the many trips to hospitals, some times twice a week. To holding Lilybear while they stuck her in more plaster. When I remember the sleepless nights filled with tears, leg cramps, and trying desperately with my husband to find a position that she was comfortable to sleep in. The stress of what the Dr. will say at our next visit. Are her feet better or worse? Worry about if she will need more surgery in the future. The list could go on and on. I'm tired. . . My husband is tired. . . Being a parent of a child with any type of special need is mentally, emotionally, and physically tiring.
2. I am jealous.
Not as much now as I was for months. As I watched other little ones doing things like rolling over, crawling, sitting on their own, and the list going on. Yes, Lilybear overcame all of these things. She has hit every milestone, and is now cruising along furniture, and getting ready to take those first steps. . . but for months I was jealous of every child who didn't have to fight as hard as she did. I was jealous of mothers who didn't have to struggle with finding ways to work around double leg casts. I was jealous of other babies getting picked up, and cuddled, and held by friends and family. . . when there were so many who weren't sure just how to hold Lilybear, so they just didn't try. . . But I am so happy to have gone through every minute of this journey with Lilybear, Peanut, and my husband. I was jealous, and may be at times in the future, but I wouldn't change it for the world.
3. I feel alone.
At times, I have felt alone. Always though, I had my husband at my side who helped me through. :) I have loving family that were there when I needed them. But still at times, I've felt alone. Wondering if anyone else knows what was going on in my head. I am so thankful, and grateful to My husband, family, and my dear friend that has been through this the same as me. I may never have been alone, but I felt alone at times.
4. I am scared.
More than most of these other feelings/emotions. I am scared. I worried before Lilybear was here, with my husband, and family. What would this all be like? Would she walk? Could they fix her feet? I feared appointments that determined if we were moving forward or backward with treatments. I was scared of having her put under for surgery. . . . both times. I am scared we will have another relapse, and that Lilybear would have to go through casting again. I am scared still that she may walk differently then her peers, and that she may be the 'different kid' because of it. I am scared even about writing this all out, still not even sure if I'll hit publish at the end, because I am scared of telling everyone that I am scared.
5. I wish you would stop saying, "it could be worse..."
I know I have even said this myself, and it really could be worse. I know that. . . I've met families that are going through a hell I don't even want to imagine. . . But just because it's true doesn't mean I need to hear it from some people that have no idea what we've been through. That may sound harsh, but I'm not talking about the people who know what all we have gone through, what Lilybear has had to deal with, and over come. I am talking about people that don't know, and say it because they can't think of anything else to say. I don't want to be rude, but I know it could be worse, and I would sometimes rather they didn't say it at all.
6. I am human.
I get frustrated. I get upset. I cry. I make mistakes. I worry. I stress. I get angry. I get hurt. I am human. Just because my daughter was born with bilateral club foot doesn't change that. I have been given this beautiful baby girl that amazes me every day. She is stronger than I ever think I could be. She has helped me grow, and has given me perspective. Through all of this, I am a better person because of Lilybear, and my little family. . . But I am human, and that's OK with me, and I hope it is with you.
7. I want to talk about my daughter/It's hard to talk about my daughter.
Most of the time I am very willing to talk about Lilybear, or Peanut. I am so proud of my girls, and I know my husband is too. They are amazing girls, and we love them from the bottom of our hearts. But when you are talking to any parent of a special needs child, you need to remember that sometimes it is hard to talk about it, or we don't want to go through talking about it again. When Lilybear had to go to IWK. It was hard to know that they weren't successful treating her here. And sometimes I didn't want to talk about it. When she had to start back at square one, I didn't always want to talk about it. When she had a relapse and needed surgery again. . . the list goes on. The point is that sometimes it is hard to talk about it. Sometimes I want to, but I can't find the words. That's why this blog helps me I think. I can hash it all out here. It's a lot easier to type then to talk sometimes. :)
So those are my 7 things . . . Good night
I originally wasn't going to publish this post. I shared it with some members of my baby group on Facebook, and with their encouragement I am publishing it now. I agree with their thought that this post could help another parent going through situations like ours. I only hope that posting this will help someone out there that needs to know that they are not alone in their feelings. . . and that it's ok to have all of these feelings too. Thank you to my baby group for given me the little push that I needed to publish this. :) You ladies are amazing!!