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Recovering

April 23, 2010 by Victoria

Gwendolyn is doing okay. Apart from worry and insomnia, we are recovering...but it has left us all in a fog. Bill is exhausted.Gwendolyn wants her bipap all the time, which seems more psychological than an actual breathing change. And I start something and completely forget what I am doing. We are trying to get rested and refocused -- we have to -- but it is difficult to simply snap back.I locked Gwendolyn in the car on Monday, which I know is directly related to me being so out of it. Thankfully Gwendolyn remained calm while two sheriffs, one tow truck, three firemen, and Bill (who ran and hitchhiked from work to get to us) tried to get the door open. (It was Bill's swift action and getting to us so quickly with extra keys that saved the day!) We are all still clingy and in need of low energy movie watching, book reading, and snuggles. But, how do you shake off the image of your lifeless child?

We know Gwendolyn is going to die and that is excruciating. It is nothing like the worry of something bad happening -- even the worry of a possible SMA diagnosis. No, the real deal living with SMA and watching my child deteriorate is like someone ripping my insides out (it is a million times more painful than you can imagine). But, I know that the knowing I will lose Gwendolyn pales to the enormity of actually really losing her. And that leaves me paralyzed.

I have replayed the incident over and over in my mind, which at first was helpful so I could process it and learn from it. But each time I go over it all again, I am confronted with the image of my sweet little girl in her white ruffled shirt blue... mottled...unresponsive... lifeless. I don't want to go over it anymore. I'm done talking about it. I don't want to imagine all the possible ways she may die, when we will resuscitate and when we may not be able to. I don't want her to hear the conversations about it. I'm done.I'm not a fan of sweeping things under the rug, but I think I need to so that I can move forward.

Talk About It

I wish I could say I didn't know how you feel. But I do. I saw Chloe just this way several times before we agreed it was time to let her go. There is nothing to prepare you, nothing to say to make it better. The grieving that took place for me when we found out Chloe would DIE because of SMA is ongoing. I will tell you that I have peace knowing that the struggles she endured are no longer. I am OK with hurting if it means she doesn't have to anymore. I wish I could take this away from you. Hug you. Meet Gwendolyn. You are the most amazing parents. You are making the world aware of this disease so others might one day be told that their baby can be CURED. I am just so sorry.

Posted by Corinne on 2010-04-23 18:49:37

Big Hugs and Love coming from the Howsdens! That's it just big hugs and love. Praying for you. Always here if you need us. Always.

Posted by Molly Howsden on 2010-04-23 18:52:45

You are right Victoria. Time to move forward. However, talking about it, and replaying the process is what has helped you to move forward. One must remember that is how we recover and heal. You are an amazing mother, wife, friend, and someone I truely respect and proud to know. I know the journey is difficult, but you have made Gwendolyn's life rich and full of possibilities that I could not have imagined when I first met you. I send my love to all of you.

Posted by Laura Haywood on 2010-04-23 19:13:31

Dear Victoria and Bill, I'm sorry you are in so much pain. And I do understand how you feel. I think most of your SMA Family does too, unfortunately. I wish I could be there to put my arms around you and give you a hug. Sometimes you have to take 1 hour at a time before you can take 1 day at a time. Allow the prayers of your friends and God's Strong Arms to carry you for a while. We love you.

Posted by Suzanne Williams, Erinne's Mom on 2010-04-23 19:14:21

I am no expert... but I don't think what you guys went through the other day is something to easily get over. It is scary and scaring... Leaves an impression on you that you wish you could forget but can't. I can't imagine how painful it is to have that knowledge that you could or will loose her. Hell, that knowledge is extremely painful for me, an outsider... You guys have had such a hard week. I hope for a very relaxing weekend, full of snuggles and love, for you all... Sending lots of love and prayers your way... xoxo

Posted by Sam on 2010-04-23 20:14:33

Terminal illness presents with an exceedingly difficult and contradictory challenge: it is our nature to want to live. Gwendolyn wants to live and laugh and play as often as she can. She is living happily because of you and Bill. You both do what is in your power to make her comfortable. To create special, memorable moments for her. You make each day count and have taught so many of us the importance of that. Above all, you spend all of your time with Miss G. She sees that the people who mean the most to her are around her as often as possible. I send love, positivity, good thoughts and many hugs to you both. I am wrapping you guys up in my prayers tonight even more, hoping that you have a tlc weekend! Be well.... Lisa

Posted by Lisa Prokopetz on 2010-04-23 20:21:32

I am so sorry that all of you had this awful experience. I, too am no expert, but it appears you may be suffering from a case of PSD (Post-traumatic Stress Disorder). It is quite common and can be hard to shake. I have suffered from it so I understand it from that stand point. The flashbacks are all a very normal part of PSD, as is the lack of sleep, worry and forgetfullness. It may help to seek professional therapy. I know people have stigmas attached to needing outside help, but it can be so beneficial in breaking the PSD hold on your life. I say this because that is the only thing that worked for me. Wishing you much luck in rusuming normalcy, it can be done! I am sending you lots of prayers of comfort! You two are absolutely wonderful parents, and your family is blessed in the sense that you all love each other so very much. Peace be with all of you!

Posted by Jillian on 2010-04-23 20:47:52

Much much love from the NY cousins.

Posted by Margaret on 2010-04-24 05:00:50

I wish I could say it will all be ok, but the honest truth is what you are living and going to live through is hell. I thought after losing Jacobsen I would be more prepared but losing Hodges has been nothing short of torture. Love that little girl every second of every day and we are praying and hoping for a treatment or cure to help save her life! You guys are doing an amazing job and because of Gwendolyn and you alls devotion and passion to end SMA, a cure is closer! Love from GA, ashley

Posted by Ashley on 2010-04-24 05:55:56

I hate SMA :(. Love you.

Posted by Theresa Portugal on 2010-04-24 07:52:25

Wow, another remarkable experience. I can just picture Bill getting there ASAP! He has a knack for that. Hitchhiking this time.......oh boy! Thanx goodness 'all is well' N 'lil Gee was calm as everyone else was very 'rattled' to say the least. I know that feeling of 'uut ohh' my keys are in the car and it is locked. Slow down! Take it one day at a time. Easy does it. Keep it simple. All easier said than done.

Posted by Auntie Weez on 2010-04-24 08:03:46

I am not sure that the traumatic events that happen with our sweet SMA children ever stop popping up in our minds but it is the sweet smiles and giggles and the stubborn things they are doing now that keep us from dweling on the bad things. I still remember frequently the night that Micah was dying in the PICu and Danielle and Gino (two amazing nurses) were doing CPR on my 6 month old baby! you just never for get that stuff. I feel like you guys are part of our family I think of you all so often and If we can do anything i mean ANYTHING please let us know!!!

Posted by Chelsea on 2010-04-24 08:41:54

So wish I had all the right words.So wish there were something I could do for your scared and paralyzed beautiful heart.I have watched with complete awe,the morphing of this site, the establishment of foundations the fundraising and all the while my mind is saying I am so proud of you guys and believe me, I am but my heart is saying ... why?Why SHOULD they have to be doing this?Why should their hearts be filled with sadness and fear of the uncertain?Why should any parent have to endure this?I come up empty handed each time I revisit the why's so I rely on my faith and i send you love and prayers of peace and strength... knowing I would do so much more than that for you all if it could take this cross away from you.. Sending all my love,today and tomorrow and always.

Posted by Zoey's mom on 2010-04-24 09:21:23

Oh honey, I had no idea anything happened!!! I have been out of blogland. I am so sorry all of you had to go through that!! I am thankful she is ok and you guys are recovering, but I know the tremendous load you bear and I wish I could help you bear it. You guys are never far from our thoughts. love to you all!!

Posted by Devon on 2010-04-24 10:31:18

{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}} I don't know what else to say. Except that. And Godspeed.

Posted by SithSnoopy on 2010-04-24 10:50:57

Oh how I wish things were different. I feel like a kid..."IT'S NOT FAIR!" I don't know how you do it. I don't know why good people, especially beautiful children, have bad things happen. I pray for you, for her. I wish there was something I could do....Words never seem like enough and it's frustrating. Just know that you are prayed for and may you find the comfort you need each day.....

Posted by Misty on 2010-04-24 11:29:34

I have the same thoughts over and over again in my head as well. When and how will it happen? All I can do is hope and pray that Sam will go in peace when her time comes. Hugs!

Posted by Laura Bennett on 2010-04-24 11:42:21

My daughter coded three times when she was younger. Then we had no BiPAP, times were different then, she's miraculously reached 25 years old with the help of machines. But the thought and memory is always in the back of my mind. As the years go on, we have become more than mother and daughter, we are friends and share many things and I often think about what I would do with my life after caring and fighting for her day after day, night after night for so many years, but then I think about what would happen to her if anything happened to me first and about how people fear death more than pain and suffering. Sending you a big hug Victoria, live from day to day.

Posted by Julie on 2010-04-24 12:41:21

My heart is torn into pieces when I read of the traumas you go through - such superhuman courage all three of you have to show each and every day. And my heart glows and sings when I see the love and beautiful experiences you create and share with Gwendolyn. Be gentle with yourself - be as gentle as you are with Gwendolyn. Your reaction to such a traumatic event has been completely natural, and you do need time to recover from such a shock. You are such an amazing family and should never ever ever ever have to go through what you are going through. I'm sure you will move forward and get back to making the best of every day, because that's what you and Bill are so good at. Love you all so much. I love that you are surrounded near and far by so many people that love you all.

Posted by Clare on 2010-04-24 12:59:17

My heart hurts for you and we are sending lots of love and prayers your way everyday. We have not yet experienced what you have experienced with Gwendolyn with our Nicholas, but know that someday we will and the prognosis of this disease never leaves our minds. I think you are doing everything right-reading, watching movies, cuddling-just being together and enjoying every moment. That is the biggest thing that Nichoas has taught us-we treasure every moment and spend a lot of time doing those small things as a family. If I know anything, I know Gwendolyn is a fighter and she is such an inspiration to us.

Posted by Jessica on 2010-04-24 14:53:16

Victoria, I cannot imagine the utter panic you must have felt realizing Gwendolyn was locked in the car. What if she had choked or needed suctioning. I am so glad Bill was able to get there so fast. Is there any way you can get a valet key to keep on your person, as a necklace or bracelet?? My MIL had an extra key behind the license plate on her car. Of course, she would have needed a screwdriver to take the plate off to get to the key. Just brainstorming. Hugz,

Posted by Rayni on 2010-04-24 18:15:05

It sounds unimaginable. Do you have someone to talk to? Even it's via skype? It might be helpful to find a way to put the scenes behind you if they are no longer useful. You are an amazing mom, even when you don't feel like it.

Posted by Robin on 2010-04-24 19:48:51

I hate SMA. I pray every single day for a cure. I pray every morning for Gwendolyn to have an outstanding day. In the midst of takng care of Gwendolyn you must also take care of yourself, so that you can take care of G. I don't know if you have ever gone to therapy to help you handle all that you carry on your shoulders, but I do know therapy helps a lot (and I do speak from experience.) Take some time to snuggle and watch some fun movies, and read some books. Family time sounds like just what is needed to let it all go and move forward. Keep moving forward. Please know that you are in our prayers and I hope you can feel God's arms surrounding you all. Lots of love for you all, Mari

Posted by Mari aka Thorney on 2010-04-24 23:42:19

How could anyone living your SMA life NOT be affected? How can you not bargain your life everyday for a little more time? My heart just breaks and at the same time stands in awe of you both. Your life, your every breath is watching and racing a clock while you make sure that Gwendolyn experiences life to its very fullest.. I haven't been able to get your family off my mind every since Gwendolyn's episode. I feel such an urgency.... time is ticking. Gwendolyn and all her friends need time.... time to be strong and hold on till the cure. I think people are starting to think I am crazy, maybe I am. I feel like an SMA public announcement, I can't imagine it from your personal perpsective Hold onto your sweet girl and watch all those princess movies. Let yourself soak in your time with Gwendolyn. Hugs to you all Hoping, praying here in Ohio Penny

Posted by Penny on 2010-04-25 15:24:44

You and Bill are incredible. Gwendolyn is so fortunate to live with heroes such as yourselves. Smile as much as possible, rest when you can, cry when you need to, and we will all keep hope alive together.

Posted by Austin Pittman on 2010-04-26 15:28:31

Just thought I would let you know I mentioned Gwendolyn on my blog and also put her picture up. Hope that's ok...

Posted by Misty on 2010-04-28 12:47:10

This is so sad :( We ? you Gwendolyn.

Posted by Jen on 2010-04-29 00:34:41

Hi hugs to you all and you're right find something fun and enjoyable to take your mind off this. It happened and it was a complete accident don't beat yourself up over it. Just rest and revitalize your energy through good fresh foods and just get some rest. If you don't want to think about it don't. Also don't think about the when just live in the present of now. Now is all any of us has. Tomorrow doesn't matter and neither does yesterday. be in the now now. Love and live now the rest is not for you so don't worry over it. The past is over and the future isn't here so use now to be in now. hugs and love to you Gwen <3 ~Moon Satori You both are doing the very best for her and that's all we parents can do.

Posted by Moon Satori on 2010-05-01 09:45:29

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