Acceptance and Hope

Not long ago I decided to seek help from a counselor. I was not to the point where I wanted to hurt myself or others. I just was in a rut. I didn’t want to clean around the house. I didn’t really want to spend time with Kenny or the boys. I just wanted to be by myself. I focused completely on my photography business because that was the one thing I could do and get praise for. Photography was time just for me, and I was able to get a break from everything else. I felt like a failure to Kenny, Dustyn, and Carsyn. I felt hopeless. That nothing was going to get better in my life. That I might as well just give up on everything. Carsyn was not improving much in therapy. I felt like what is the point of spending so much time in therapy if it wasn’t helping? I felt so much better after talking with my counselor. She reassured me that this was a very normal reaction with everything going on in my life. She also told me how wonderful it was that I realized that I needed help and followed through with it.  This is when the stage of acceptance and hope began.

Acceptance and Hope

I have officially been through all the stages of grief/loss. No, I did not lose Carsyn. I am so grateful that he is still here with me. Several times I thought to myself why should I depressed? Many parents lose their kids everyday. I don’t have a right to be grieving. My counselor told me that I do have a right. I can and do grieve the loss of the life I thought we were going to have as a family. I pictured the boys growing up close together, and being best friends. Laying down on the floor wrestling and chasing each other. Growing up talking about their girlfriends and what they wanted to do for the weekend. Now that I am on my way to recover I realize I did go through all the stages even if I didn’t realize them at the time.

Acceptance and Hope

Denial/Isolation:

When we first learned of Carsyn’s diagnosis we stopped going to church and really talking to any friends. I mean I would “talk” to them but I wouldn’t really let them in. I just wanted to be by myself most of the time. I was also in denial. I couldn’t believe this was happening and I still believed that the doctors were wrong.

Anger:

I was angry at God, I was angry at myself, I was angry at everyone around me leading normal lives. This is the point where I was lashing out at Kenny and Dustyn and realized I needed help. I sought help from a doctor and got medication soon after his diagnosis 3 years ago but she didn’t really follow along to see how I was doing and I ended up not taking it.

Bargaining:

I would try to bargain with God and say if you heal him, I will become a better Follower. This stage didn’t last too long because I kind of realized it wasn’t the right thing to do.

Depression:

I wasn’t cleaning, the house I wasn’t doing anything. I just wanted to lay around and sleep. I dealt with this a long time before I sought help from a counselor. A couple of my close friends really encouraged me to do this. I am so glad I did. I was able to talk about everything in my life and she reassured me that I was completely normal.

Acceptance and Hope:

After seeing my counselor a few times she recommended that I talk with a local NP about different medicines I could try. I have finally found a medicine that is working and she is following me very closely to make sure it is still helping. I am so grateful because it has finally helped me to accept my life just the way it is. I now know that I am the only one that can make my life good.

Now that I having finally accepted my life the way it is I am hopeful! Praying Carsyn will get his wheelchair soon and will become more independent. He will be able to chase Dustyn around. I am sure he would get a kick out of running into Dustyn. I have been applying for the Medicaid Waiver program, and other programs out there for Special Needs Kids. I am looking into alternative therapies like Hippotherapy, Water Therapy, etc. I am getting involved more with other parents of special needs kids. I finally feel like I want to do everything in my power to make Carsyn’s life the best possible.

Acceptance and Hope

Happy 31st Birthday Kenny!
Weekly Wishes #6

Comments

  1. Kristyn says

    Wow! thanks for sharing! it takes a lot of strength and courage to open up to someone

  2. says

    I’m so sorry that life changed this way, but I’m so glad that you’re pulling through the grief of it all–that’s still something I’m struggling to do, some days. It truly is hard to imagine your life different than what you had planned when you were thinking about your family’s future–your child’s future. I’m not dropping any cliche words of encouragement on you–I know you’ve heard it all. My child has a disability as well, but it’s not obvious to just anyone, because it’s not really a physical problem. I’ve learned that it creates a sense of community among parents with children with a similar/same diagnosis. My baby’s always on my mind and I keep telling myself “don’t miss out on our today, from worrying about his tomorrows.” That will be my best advice for you. Just in case it matters, my close friend’s child has CP and he’s now 11 and just like other little boys, with the exception of the physical challenges. He’s sweet, loves sports, loves his family, gets an attitude with his mom and loves hanging out with his little sister. Hugs for you, mama.
    Tiffany @ Daydreaming Realist. I found you through the linky on the cbias site.

  3. says

    I don’t know how I am just seeing this now, sorry about that!

    It’s a shame that we all get stuck in the “I shouldn’t feel X because other people have it worse” – I know I’m guilty of that too but as human beings, we all have the rights to our own feelings, even when our situations aren’t as bad or are better than others – our feelings are simply that – OURS. Too often I’ve struggled with something and then felt ashamed because hey, at least I have a husband/child/etc and that shame helps nothing.

    Kudos to you for seeking help and I’m glad that the professional you went to was able to offer guidance – often times it takes several tries to find someone that you mesh with and going to a therapist and not having it work out makes things seem even worse. I’m glad you’re feeling a bit better about things now, but don’t ever forget that you have every right to feel down about things sometimes – we all do!

    Praying for you and your beautiful family all the time, my friend!

    • says

      Awww. Thank you so much! Yes it is easy to get sucked in to feeling bad because other people have it worse. Thanks again. This mean so much to me.

  4. says

    Oh, Sarah. This post brought so many tears for me. While I do not know what it’s like to mother a special needs child, I do know what it’s like to be depressed and withdraw from your family because of it. I am so happy to read that you sought the help of a therapist. Doesn’t it make a world of difference? Life is rough, sometimes rougher for others than some of us and we all have those hard times. There’s nothing wrong with getting help, even if it is in the form of a therapist and/or medication. My life (and my families lives) would not be the same if I weren’t on my medication. You ARE the best mom for Carsyn and he knows that deep down. You and Kenny are amazing, awesome parents and the boys are both so lucky to have you. Reaching out to other parents who have special needs children is sure to be a big help too! I hope that you know I’m always just an email or text away if you ever need someone to talk to. Hugs! Keep your chin up, you’re doing a fabulous job. xo

  5. Shannon says

    I am glad that you are at acceptance. This has taken me so much time to come to this place in my life. Keeping you in my thoughts.

    • says

      It is hard to get there and I definitely don’t think I am there permanently. As of right now I am feeling good about where I am.

  6. Katherines Corner says

    my hand in yours. I send you gentle hugs and I am happy you have found your way back into the light. You are blessed with the richness of the love of God and your family. Acceptance moves you forward you will no longer find yourself in a rut as you have smoothed your path now to move forward. xo

  7. says

    Sarah, this is just beautiful. And so brave. Coming forward and sharing your struggle will help so many others who might be hesitant to seek outside help. You had/have every right to grieve and in doing so, you’re brought to this place of hope and acceptance. You’re such an awesome mom to those boys and I have no doubt that this step will show others how to move in strength when you think you have none.

  8. says

    Sarah,

    What a personal and beautiful post. I am so happy things are progressing for you and your family. Your words and courage to share are an inspiration. Praying for your lovely family.

    Tiffany

  9. says

    Sarah,
    I’m so glad you found the help you needed. I totally understand the grief. I always tell new parents who have a baby with Down syndrome that it is normal to grieve for the child you thought you were going to have. Your dreams and plans change. This essay sums it up pretty well–

    WELCOME TO HOLLAND
    by Emily Perl Kingsley

    I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

    When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

    “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

    But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

    The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

    And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

    But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

    “Welcome to Holland (Part 2)” by Emily Perl Kingsley

    I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I’d planned.

    I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

    I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

    Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn’t so bad.

    I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I’ve wondered what life would have been like if I’d landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

    Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its’ tulips, windmills and Rembrandts.

    I have come to love Holland and call it Home.

    I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

    Yes, over a decade ago I landed in a place I hadn’t planned. Yet I am thankful, for this destination has been richer than I could have imagined!

  10. says

    Sometimes I struggle with feeling guilty for being upset about what all I go through with Cam but it is hard and like your counselor said, we do have the right to be upset and grieve.

    I love that last pic by the way. He has the sweetest facial features!

  11. says

    Thank you for sharing this. I admire you for the courage you have for everyday life! Go excited that you have found the hope you need!!! :) love you, friend!

  12. says

    Yes, you do have every right to grieve! Good for you for getting the help you needed. I know it’s not what you pictured but your family is beautiful! I hope the wheelchair comes through very soon!

  13. says

    Thank you for your honesty. We all go through the process differently, while different its nice to not feel alone. Hugs to you and prayers your mental health continues to prosper.

  14. says

    Oh, Sarah, my heart goes out to you. You are such an amazing mother and photographer. I am so glad you’re getting support and channeling the positives. I too have come to the conclusion I need “help” dealing with issues in my life and am starting therapy tomorrow. Thank you for being so honest and open.