Friday, August 26, 2011

Holton's Drive for SIDS

Tomorrow is a big day! We are participating in a golf tournament benefiting SIDS. Throughout my SIDS journey, I have been blessed with meeting many new wonderful people. Many of these people all have their story to tell, some families a SIDS story.

I met Kathy and her family about 5 months ago. I was given her information through my pediatrician and was told that she's a SIDS survivor. Our initial conversation was over the phone, about 2 hours long. Her sweet 2nd born, Holton, was taken by SIDS during his normal morning nap. He was 5 months old. They decided in their pain to continue Holton's legacy and use his sweet life to save others. While this is their 5th annual SIDS tournament, it will be our first.

The golf tournament raises money through auction items and all proceeds go to First Candle and the SIDS alliance. Through our awful losses, all families are hopeful to find a cure for this silent killer.

A couple of Travis' buddies are playing in the tournament tomorrow. Travis, my mother in law, and I are volunteering to be of any assistance during and after the tournament. The golf tournament starts at 1, followed by a live and silent auction, and dinner catered in. It's sure to be a great event, a wonderful turnout, and a sweet day to remember the babies gone too soon.

In memory of our sweet Ainslee, hold 3 will be dedicated to her since she was 3 months old. I had the "hold sign" made for her and hopefully, she'll be proud to see that she is not forgotten. That her life is just beginning and as her mother, I am making sure to do everything in my power to keep her alive. Here is a picture of her hold sign for hole 3.

If you are interested in Holton's Drive for SIDS, would like to donate to the organization, or would just like to see what it's all about, you can check it out at the following:

Love and Miss you dearly Ainslee!


Sunday, August 21, 2011

She Lives!

God heard me and in my loneliness he provided me with His love, His strength, His comfort. Today, we got up early and decided to go to 9:00 o'clock Mass. We typically go at 11 but figured we'd try to get church, breakfast, and the cemetery complete before noon. Adrian did so well in church this morning. There were two baptisms today, and of course they always bring a tear to my eye. So many memories of my sweet babies in that church.

Every Sunday our church has donuts and coffee following the service and Travis always jokes around about stopping in and getting a donut. We've joked about this for probably 3 years now. Today he seemed a little more persistent about the donuts, there was passion behind his joke. I figured today was the day to stop in, have a donut, and enjoy some juice with our church family. We got our food and sat down at a table with Adrian, he loved the chocolate donut. We don't get them too often. Afterwards, he was able to run free in the big gym they have there with all the other kids. He'd run really fast and then he'd stop for a bit to watch the older boys run really really fast.

As we enjoyed our family time my eye caught a huge flower. It was on the head of a beautiful baby girl. She was sitting in her car seat, smiling, cooing. My heart was being drawn to her and finally I had to get up to see her sweet face. I knew she was around Ainslee's age. I asked the mother if I could see her and she of course said yes so I bent down and talked to her. I touched her little feet, smiled at her, and she smiled back. The mother bent down and took my hand and introduced herself. She said, "I know who you are." I didn't have to tell her my story, she knew. She had tears in her eyes. Her sweet little one is 11 weeks old, close to Ainslee. The mother told me she vividly remembers Ainslee's baptism, that amazes me. I've heard from a few people that they remember her baptism and to me that's just wonderful. They REMEMBER.

As we talked, another woman came up to us, tears in her eyes. She immediately threw her arms around me, baby in hand. She just wept. She told me she's prayed for over 6 months for us now. She said she didn't know if she'd ever get to meet me, but she felt like a best friend because of how much she's prayed for us. She said she wakes in the middle of the night to pray, that she prays the rosary for us, that she thinks of us constantly. And the look in her eyes was the most genuine look I've ever seen. These two women I met were wonderful, they were God sent.

Before we parted ways, we discussed Ainslee and the fact that I have two very alive children. Ainslee is very much alive in Heaven. She is crawling, she is running, she is walking, she is talking, she is being loved...SHE LIVES! These women were so comforting, they reminded me that she is so alive. And to never forget that. I loved how I left church this morning and felt so blessed to have God take care of me in this way.

I got in my car and had a text message from an old friend. She told me that she shared my story with her friend and that her friend was so touched that she is naming her daughter Ainslee, after our sweet girl. She lives on!

As always, we stopped by the cemetery on the way home. We watered Ainslee's flowers and read her Blessings Every Day book. Here's today's story that I wanted to share with really wraps up my day.

For All Time

Anyone who believes in me, even though he dies like anyone else, shall live again. John 11:25

If you've ever had a grandpa, grandma, parent, sister, or brother who died, you know it hurts to have someone you love go away. But Jesus made us a wonderful promise. He said that when we believe in him, after we die, we will live again. We won't live on earth forever. But we will live in heaven with God for all time. And all those people who believed in Jesus and died before us will be there too, happy to see us again.

Although I'm sad when loved ones go away,
I'll be happy to see them again one day.

You see. God heard my cry, he knows my heart, and He is helping me to heal. He is showing me I'm not alone. That in my darkest times, He is there just as He always has been. Today was a blessing. And because of Him, she lives.


Saturday, August 20, 2011

Loneliness and Relationships

Let me tell you.....the loneliness has set in. I often feel very alone in my grief. I think it's easy to feel that way because life for everyone else just keeps going. And essentially it does for us as well, even though it feels as if it stopped the day she died. Pregnancies are all around, babies being born (girls seem to be the "in" thing right now), passing 3 months in age, 6 months....and soon a year. And our little girl had to stop at 3 months. Just doesn't seem right.

There can be days where the phone doesn't ring, no emails to be seen, no cards in the mail. On those days, it can feel as if you're alone in your grief. It can feel as if the world is going on and you're just stuck in this awful place with nowhere to go or no way to get out. You're trapped. That's when the loneliness can really set in. The depression can feel heavier.

The loneliness has led me to feeling like my relationships have changed drastically. I was told when Ainslee died that this would happen and I thought surely not, not to us. We've already had the unthinkable happen, surely our relationships in life wouldn't change also. Boy was I wrong. Through the loneliness, you want to have those same relationships you've always had, you want those to continue. You don't want to lose anymore than you already have. And those people want the "normal" you back. They want to carry on as if nothing has happened. They want to be there, but say they don't know how to be. Trust me, I don't have the answers to that either. It's sad that when we've lost so much in life, that relationships can't stay the same.

I think having gone through what we have, and currently having relationships tested, I would give one piece of advice for those who know someone going through an awful time. Be a friend. Whether your relationship to the person that has lost is their mother, their father, sister/brother, cousin, co-worker, friend, etc....just be there. Don't say that you're there for them, show them. Call them. Tell them you care. Schedule dinner with them, schedule time to see them on a regular basis. Mention their child's name. Trust me, bereaved parents want nothing more than for the entire world to remember their child. Saying the child's name doesn't upset them more, it shows that you remember. And that you're not afraid to show them you remember.

As a bereaved mother, I live this nightmare daily. I know she's gone. Do people think that some days I don't have the pain and don't realize she's gone? I live this day in and day out. So going through the pain can be lonely. But, if you have those special relationships to remind you that each person in your life remembers, cares, and will talk about your child....the loneliness may not seem as bad.


Saturday, August 13, 2011

Bring the Rain

Waking up this morning to a wonderful rainy Saturday morning was amazing. I love rain, I've always loved rain. And this is much needed rain. I feel like it was good mentally for me to have some rain finally. This post is more or less just an update of what's been going on in our lives the last 5 days since I've posted.

This week was busy. I had two support group meetings, a SIDS support group and MEND. We're getting ready for our MEND Walk to Remember October 1st. I've got all our t-shirts ordered, I've got our sign together, and I think I've just about got the number of people that will attend. Looks like we'll have a pretty big group representing Ainslee.

I've been putting off a couple of calls the last 2 or 3 months that I really haven't wanted to make but knew I eventually would. The first call would be to the medical examiner's office. They originally put a ridiculous cause of death on Ainslee's autopsy report and it really angered me. So much so, that I spoke to specialists about the result and then had a 2nd autopsy done for confirmation. The 2nd autopsy came back and confirmed my speculation of SIDS. I knew that's what had happened, I knew that this silent killer took her. I wanted the accurate cause of death on her autopsy report and her death certificate. It is so important to me. I finally got up the energy to call the ME's office on Wednesday. It was really hard on me. The assistant told me they would put Ainslee's case up for review next Wednesday and Thursday and come up with a final decision on her death. I will get a call by Friday. I'm nervous on one hand, but so glad I have that piece of it over with. I'm praying so hard that they put the correct cause of death down.

The 2nd call that I completed this past Wednesday was calling the fire department that responded to Ainslee the day she passed. I have been so eaten up with her being alone when she died and no one really helping her. I do however find comfort that, as soon as the fire department arrived, I KNOW they did their job to try to save our little girl. I know they were the ones with her on the way to the hospital. So, when I feel like I couldn't do anything at that time to save her, these men/women did. I have felt like I wanted to tell them that I'm thankful for what they do. After all, these are the people that were there with my daughter, holding her hand when her mother couldn't.

Those two calls were very emotional for me. My MEND group is always emotional for me. It's just hard everytime we go around the room to tell what has happened to our children. I'm the only one usually at the group that has a SIDS baby. Most babies are stillborn, between 20 and 40 weeks. There is one other couple who lost their 3 month old due to heart issues. These groups really open your eyes to all the possibilities of what can go wrong in a pregnancy, during infant years, and even toddler years. So scary.

Adrian starts preschool the first week of September, it's just 2 days a week. But it will help him to get back into a social setting and it'll free up more time for me to work since I work full time at home with him. I know that him going back to a setting outside of our house in someone else's care will be so hard on me. I'm very very scared about this. My trust has failed in other people. I don't trust much anymore. I did decide that it would be a good idea to take advantage of the volunteer opportunities they have at his school for this next year. Adrian's class is called Little Lambs, and there's 12 two year olds in his class. I decided to volunteer to be Adrian's Home Room Mom. I'm so excited about it. My mom was always my home room mom and growing up I always wanted to do this for my children.

I know I briefly mentioned about Ainslee's Bows...I'm still collecting bows for Ainslee's 1st birthday, holidays, etc. But, I'm also starting "Ainslee's Bows", a way to share our love for bows, and spread SIDS information. I'm really trying to get the first batch of Ainslee's bows delivered in October. So, I've got to get a lot of bows together, the materials to figure out how to put them together in a little package, the SIDS flyers to add in the packages, and a business card sized tag to attach on the outside of the packages to explain "Ainslee's Bows." We have a long way to go, and I think this next year we'll be super busy. I figure this will be good to get me through the rest of the year. Then 2012 I can start planning her 1 year memorial, and celebrate in April with Spring for SIDS Baseball and corporate events. As you can see, I'm trying to keep my mind busy but also use the sad energy I have to do better for Ainslee.

In the meantime, I'm hoping God will keep bringing the rain!


Monday, August 8, 2011

Seriously, half a year!?

If someone would have ever told me that we'd be without our daugher, I wouldn't believe them. If somebody would have said you'll survive it 6 months down the road, I wouldn't believe them. I'm not sure how I'm doing this, how Travis is doing this, how Adrian is doing this....but we are. Many times I don't feel much strength to stand, no energy to cook, to clean, etc...but I still get up everyday and do the best I can do that day. Most days my best isn't great, but it's my best at this given time in my life. I miss Ainslee now more than I ever have before. The pain of her being gone has really hit now. Time keeps going, and it makes me feel further away from her.

Adrian and I went to the cemetery today at lunch and every time we get there together he runs out of the car straight to her "spot" and kneels down with his prayer hands, it's by far the cutest thing I've ever seen. It also can make me so sad to see how respectful a 2 year old can be of his little sister. He misses her so much too. I always pray with her before I leave and Adrian will either hold my hand while I pray or he'll do his prayer hands. There's something so sweet about seeing a 2 year old pray.

I have a hard time realizing that we've actually "made it" for 6 months. How has it been that we've managed for half a year? I'll never know. Half a year seems almost like a lifetime in perspective of the time we've been away from her. 6 months ago I definitely thought I was going to die with Ainslee. And to be honest, I still think that sometimes. But I'm reminded that I have so much to live for. I have the sweetest boy I could ever ask for. I have a great husband to care for. God is providing us with hope, He is showing us He has a plan for us. He will comfort us, He will sustain this hurt. And I have the most wonderful welcome when I get to heaven. What a joyous day that will be, to be reunited and hold my little girl once more.


Wednesday, August 3, 2011

Broken in Fear

I'm falling apart, I'm barely breathing
With a broken heart that's still beating
In the pain, there is healing
In your name I find meaning
So I'm holdin' on, I'm holdin' on, I'm holdin' on
I'm barely holdin' on to you


Feeling so broken. Feeling like I'm coming to an "end" of what I can possible handle. Feeling like I'm falling apart. There are times when I tell myself to breath. To get to the next moment, the next minute, the next second. It's awful to have a broken heart, completely shattered..yet, it still beats. How is that possible? Through all this heavy pain, this extraordinary burden, this confining grief, there has to be some healing through each consuming moment. Do you know what it's like to be completely broken, damaged, falling apart as you know it, and still have to breath air, have your heart I'm not sure I can put into words how much I DO NOT want to do this.

The fear that creeps in through all of this is oh so scary. For those of you who don't know me and those that do, I am an anxious person. I've lived a life of worry. I've lived to try and "control" what I can. I've been so scared about the things I can't control. And as if I needed added fear.

When the heaviness began, the fear jumped to new heights. Heights that I thought weren't possible to reach. I tried to control my fear and worry as much as possible before. But now, it's consuming. There's no stopping it. It's constant. Women live in fear for various reasons. And now, this woman, is fearful of everything. I'm fearful of something happening to Adrian, him starting preschool, any cold he may get, any fever he may get, what if he stops breathing, what if his sleep patterns have been altered, what if he's not eating properly, what if this affects his development and him as a little person, what if the grief gets between my marriage, what if Travis leaves me, what if the grief becomes too much, what if Adrian gets a fatal illness, what if it's sudden, what if I can't have more babies, what if I never have another daughter, what if Ainslee was scared, what if she was alone, what if she felt sad I wasn't with her.....I could go on and on. You see the fear....IS CONSUMING.

I'm broken.......and fearful.