Tag Archives: grief

Happy Birthday to my daughter who was not supposed to live past age 3!

In the summer of 2001 , when Grace was diagnosed, the world was a little different than it is now. Home computers were large, heavy, slow and relatively expensive. There was no Facebook, Instagram, Youtube or Netflix! Gasp! How did people entertain themselves?? I had only had a cell phone for a couple of years and it was a big one with no features. I only had 4 children, my dad was still alive, and there had been no earth-shattering attack on the World Trade Center Twin Towers.

In our little family, our biggest concerns were paying the bills, getting a babysitter for the weekend so we could go somewhere, what was for dinner and how hot would it be tomorrow? We were also starting to be a little worried about Grace who was not meeting milestones, was starting to cry a lot when she had previously not done so, and was showing some signs that she might have vision problems.

I remember sitting in the genetics department at Baylor  with my husband being given the unfathomable news that our daughter had a severe brain condition. The doctor was very kind but also told us that we could expect severe developmental delays, seizures, and a lifespan of two to three years. At that time, we had not had an MRI of her brain but she showed us a photo of what it would probably look like, smooth with no grooves. And later this was confirmed by MRI.

From that day, 2 – 3 years became like a deadline for us, a fearful age at which we expected to lose our daughter. I’ve talked to other parents and they live with this same feeling of impending grief. Grace’s seizures started not long after that and of course we were terrified, knowing nothing about epilepsy, seeing our baby girl jerking and turning blue and stopping breathing. We didn’t know then if seizures could kill her, actually they can, but usually they do not unless they last too long. We began a new life of taking care of our daughter’s health, talking to many doctors, worrying, praying, and trying to be good parents to our three boys. Early childhood therapists came to work with Grace at our home which was good, but also an intrusion into our routine. Finding a seizure medicine combination to control her frequent and very debilitating seizures was the highest priority.

Grace was 2 years old when we move to the country.  When she reached her third birthday and did not immediately die, we rejoiced ! She made it! She’s still alive! She beat the odds! We were and are so thankful that she is still with us. Other children I’ve met in the years since diagnosis were not so lucky. Some have barely made it to one year, having more severe heart and lung conditions along with seizures.  Others have made it 4, 5, 10 years. I’ve had to say the words “I’m so sorry for your loss.” over and over since Grace was born. It never gets easier saying goodbye to a friend’s child.

After Grace turned 12 or so, and we put her on a different seizure medication, her health seemed to stabilize and our hospital visits were much less frequent. We began to relax a bit. I started running and being able to leave her with other caregivers more often without worrying. One day I realized that the doctors were wrong. They based her prognosis on very limited information that was available at that time. Now, with better medical care, children like Grace are living longer! Not all of them, but many more than in the past. Some people might question whether this is a good thing. I think the parents know when it’s time to stop intervening.

Fast forward to yesterday! Grace is now an adult! 18 years old, with the developmental skills of an infant, but the beauty of an angel. She sometimes has the attitude of a teenager! I love it when she acts fussy like a normal girl. She has normal hormones like a regular young woman, so she will at times act grouchy and it cracks me up! She was happy yesterday, I think. She can’t talk, but she makes sounds and if you know her you can tell how she’s feeling.

I was feeling very depressed and anxious all week, but I was in such denial that I had no idea why. But finally God opened my eyes and I saw that I was feeling sad about her birthday, like I do every year,  not because it’s her birthday, but because it’s so hard to celebrate with a non-verbal, tube fed child who cannot use her hands or express her wants. I was at a loss. But while driving to town to get birthday cake ingredients, I started thinking about gift ideas. At the store I looked at the comforters and sheets, thinking I might change up her bedroom decor. But she has a special bed and I don’t think the comforter would work well, so I just keep walking around. Then I thought I’d look at a Bluetooth speaker for her room, something to hook up an old iPhone to so she could listen to streaming music instead of  radio music. Then LIGHTBULB moment! I will look at the tablets! A lot of people seem to have those for their special kids. So that is what I bought, just a cheap RCA one, but it works fine. My mood changed instantly! I had a gift for my daughter! I can’t tell you how happy this made me. I just had no idea how sad I was about this until the sadness was lifted. I am very thankful for God helping me with this and showing that He cares about even the small things.

I went home and made a delicious gluten free cake,a gluten free pasta alfredo dinner and celebrated my daughter’s 18th birthday with her and my family. To God be the glory!

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People Come and Go

Once there was a family who needed help. Child Protective Services had taken custody of their son and the parents asked the court if my family could take him in. We did. He was my nephew. I treated him like my own son. It was a very difficult situation that got worse and required a lot from me. I did my best. God helped me, but I wish I could have done more. Then CPS gave him back to his family. Today is his birthday and I haven’t heard from him or them in a few years. It makes me sad. I pray for him. I hope he’s okay.

My cousin’s ex-wife died in a foggy car crash last week. She was around 50 years old and left 4 kids and 3 grandkids that she was very close to. I remember her as a young mother with a newborn. I went to take her baby gifts. She’s gone now. So unexpected and so hard on those she left behind.

I dreamed about my dad last night. In the dream I knew he shouldn’t be there because he died in 2002. He was acting strangely. I asked him, “What? Do you have cancer again?” “Yes!”, he said in a wretched tone. I’ve thought of him several times this week. I miss him.

I had a close friend that I used to run and go to the gym with. She had a Xanax addiction. After several years, I just couldn’t deal with her lies and I had to distance myself. It was hard on both of us. Today I ran by her house. I miss those days of laughing and chatting and running.

People come and go. Be nice to them and love them while you can.

Don’t let the Terrorists Win

Today, once again, we look back with grief and confusion at a terrible day in America’s history.  According to Wikipedia, 2,996 people were killed and over 6,000 injured that day during 4 attacks carried about by the terrorist group al-Qaeda. 343 firefighters and 72 law enforcement officers were killed that day. Men, women and children of all walks of life lost their lives in an evil attempt to destabilize and destroy  and punish America for supposed crimes against Islam according to a videotape released by Osama bin Laden, founder of al-Qaeda.

In 1996, bin Laden issued a fatwā calling for American troops to leave Saudi Arabia. In 1998, al-Qaeda wrote, “for over seven years the United States has been occupying the lands of Islam in the holiest of places, the Arabian Peninsula, plundering its riches, dictating to its rulers, humiliating its people, terrorizing its neighbors, and turning its bases in the Peninsula into a spearhead through which to fight the neighboring Muslim peoples.”[51]For a brief period during and after the attacks shocked and frightened Americans became emotionally united against a common enemy. Everyone consoled each other and many prayed and memorials were held. Bumper stickers were printed and shirts screened. We were sad for the dead, proud to be American, and glad to be alive.

Meanwhile, our leaders were taking steps to prevent another terrorist attack from happening. Namely, they created at least two new departments of government.

From Wikipedia: The United States Department of Homeland Security (DHS) is a cabinet department of the United States federal government with responsibilities in public security, roughly comparable to the interior or home ministries of other countries. Its stated missions involve anti-terrorism, border security, immigration and customs, cyber security, and disaster prevention and management.[3] It was created in response to the September 11 attacks and is the youngest U.S. cabinet department. In fiscal year 2017, it was allocated a net discretionary budget of $40.6 billion.[2]Also according to Wikipedia : The Transportation Security Administration (TSA) is an agency of the U.S. Department of Homeland Security that has authority over the security of the traveling public in the United States. It was created as a response to the September 11 attacks. For fiscal year 2012, the TSA had a budget of roughly $7.6 billion. Part of the TSA budget comes from a $2.50 per-passenger tax. The Obama administration had proposed tripling this fee by 2019, with most of the increase going to reduce the national debt.[45]Need I say more? We now live in a society where we are constantly watched by millions of cameras, have our cell phones and internet messages monitored by satellites, are guilty until proven innocent, and are asked to spy and report on our suspicious neighbors and fellow citizens. Have you seen this government sponsored campaign ?

See Something, Say Something.

Personally I don’t think it is ‘everyone’s job’ to become homeland security spies. Sure, if you are going about your day and something obviously wrong is going on, call 911. But to ask people to watch  poorly done videos and have them be constantly on alert and paranoidly looking for details of a scene in case they need to make a report is just wrong. We PAY people to protect us, police, FBI, the military. It is our job to LOVE our neighbors, raise our children to be kind and tolerant of others beliefs,  speak words of peace, love and wisdom in our communities. Volunteer, give to charity, invite people over for a meal, visit the sick and elderly. Leave the crime fighting to the professionals. In doing these things we do not let the terrorists win. Love wins.

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I love how America is full of tourists from every country in the world, despite the DHS and TSA making it more difficult to travel. Keep coming! We love you! 

100 miles to zero. Snowdrop Ultra 55 hour to injured list.

March 1, 2018

Yesterday I made a big and difficult decision. After 1,033 days of running every single day, aka a run streak, I knew I had to stop. I knew this was coming because I’ve been nursing an injury for over a week that was making running difficult and creating more pain after the run. Thanks to the wonder of the internet I was able to read some other injured runner’s blogs and articles which helped me realize that I, too , would survive this unwanted rest period. It was a bit scary though, reading how depressed some people get when they get injured. I was afraid that would happen to me.

To put it mildly, change does not come easily me and I resist with all my strength.  I had good friends telling me it was time to take some rest and recovery days but I didn’t want to hear it.  Losing my streak when I was so close to hitting the 3 year mark was really hard.  And my daily routine and identity were totally involved in my running goals and processes. What would I do with my life  if I can’t get up , stretch, and run every day??  I will gain 500 pounds if I don’t run!  Fear and grief overwhelmed my mind.  I could think of nothing else.  Thanks to the actual physical pain , though,  I went through all the Grief stages very quickly. I denied (I can still run one mile a day, it’s getting better!) , I got angry ( ask my husband) , I bargained (please God!) , I got really depressed ( life sucks and always will) , and now I am in acceptance (shit happens!). It actually took a couple of weeks of denial before I hit the angry stage. I also took the intermediate step of telling my Facebook friends what was going on and asking for prayers. That was a relief to admit that things were going badly. Not sure why but I don’t like publicly admitting my weaknesses. Instead I will just whine and complain to my closest friend.

The unexpected thing is that within hours of making the tearful decision (on the phone with my husband) to end the streak, I was feeling quite good about it.  My husband went through the same process after he had to end his streak due to severe knee pain. At first he was devastated, then he said he felt a sense of freedom from the streak requirement of running at least one mile per day. As much as I loved streaking, there were some days it was inconvenient or very painful. I had a few times when I was literally grunting in pain for one mile, especially after running an ultramarathon. I also had some days when I was sick or really didn’t feel like running.  Once I ran in an airport which was kinda fun, but also not fun. And then I started having this nagging Achilles pain and the first few minutes of the run was painful.

What does this have to do with 100 miles?

Well,  woohoo ! I ran 100 miles from December 30-31, 2017 at the Snowdrop Ultra 55 hour race in Missouri City, Texas. I still have pain on the top of my right foot from that 31 hours of running on a part dirt, part concrete 3/4 mile loop.  Those miles didn’t help my already inflamed Achilles tendons. I am sure this helped me sustain the current acute ankle injury that forced me to take a break from running. Was it worth it? YES! I am super proud of that accomplishment and have great memories from the experience.

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This BEA-U-Tiful buckle was worth everything it cost me. I would like to run another 100 miler when I can train properly. I took this one very easy and just had fun. I spent 3 hours resting in my tent during the wee hours, which I would probably not do again as it really wasn’t needed.  My training leading up to it was not the best so I had low expectations. I ran a very hot 50 miler in October and a fast marathon at the beginning of December  that I had to recover from.  Besides that I really didn’t do very  many long runs.  I did manage to PR all my ultra distances in this race .  My fastest 50k and 50 miler and 100k . You have 55 hours to finish 100 or as many miles as you want, so it’s a good race for slow people. http://www.snowdropfoundation.org

IMG_0790When I look into the future, I am not sure what I see as far as running. When I’m on Facebook, I see all my friends’ running related posts, race photos and plans and it’s hard to imagine not doing that anymore, so I assume I will go back to it once I heal and rehab my ankle however long it takes. But part of me wonders if I am done with that world. Only time will tell. I’ve been running almost daily since April 2011. Maybe God has something new for me to do.

I am trusting God with my past, present and future. I am not afraid.