fear – Put the Crippled Kid up Front…

This week has been particularly challenging. Monday was fine. However, on Tuesday things got turned upside down a bit. Our Little Fighter went to the pediatrician to get some routine immunizations. When I came home from work on Tuesday, he was pretty lethargic and was quite warm.

After feeding him a bottle around 5:30, he turned an ashen gray and started having trouble breathing. Amanda rushed out the door with him and took him to the ER. I followed soon after. Thankfully, my mom was at our house so she could watch Baby Boy.

It was difficult to watch all of the poking and prodding being done to Our Little Fighter, as they began to run tests on him in the ER. I was wishing I could take his place with all of the needle pokes to his tiny body. I now can empathize with my parents who spent countless hours with me in the hospital when I was younger. It is frightening when something is happening over which you have no control.

Once all of the testing was done, acute respiratory distress was the diagnosis. However, we have no idea why it happened. Children born with trisomy 18 can have respiratory problems that can lead to sudden death. Therefore, Our Little Fighter was sent to OSF Children’s Hospital in Peoria for observation on Tuesday night. Fortunately, he was able to come home on Wednesday evening. However, we still don’t have any real answers.

Yesterday, he did fine here at home. Today, he seems to be doing better still. However, there is now always going to be a question as to if and when he will stop breathing again. Pray for peace of mind for all of us.

I am scared. Life is full of ups and downs. One moment things seem to be fine. Then the next everything changes. In these moments writing has always been very therapeutic for me. Therefore, I am going to let my fingers do the talking today.

As I mentioned in an earlier post, Amanda and I have taken in a new foster child. This baby was born with the mosaic form of trisomy 18, which means some of his cells have three copies of chromosome 18 while other cells have two copies of chromosome 18. This defect in the cells can lead to a host of developmental problems. No one really knows precisely in which cells the chromosomal abnormalities are present.

Currently, Our Little Fighter’s only visible issue is a cleft lip, which makes feeding a little more difficult. His breathing is also a bit labored. However, he sleeps, poops, and pees just like any other baby. What scares me is that the prognosis for babies born with trisomy 18 is very poor. Only between 10-15% of children with this condition live past their first birthday.

Life has thrown a lot at us since December of 2019. That is when we first became foster parents. Shortly after that the world seemed to come to a standstill due to the COVID-19 pandemic. Through this period my work life has changed a lot. The office where I work has lost two employees to retirement. One transferred to another office. Three others left to pursue other careers. Then, this past Tuesday I found out the manager of my office opted for early retirement and was gone the same day. Needless to say, there is a lot of uncertainty in life at the moment.

I wish I could say I knew how to deal with all of this better. Fortunately, Amanda and I have great support from family and friends. However, the uncertainty remains. We have had our first foster child for over 2.5 years now. To us he is our’s. I love him like I never knew that I could. He is still a ward of the state officially, which scares me more than anything else. Any day he could leave us and be given back to his birth parents.

I have to put all of this in God’s hands. Mine are not big enough to carry this load. He is faithful and just. My head says to trust Him and His will. However, my flesh is so very weak. My middle name is Thomas for good reason. I am filled with doubt on a daily basis.

There is an old spiritual song that has been covered by musicians across several genres of music. I believe I first became aware of the song via a recording done by Mississippi John Hurt, a blues musician who passed away in the mid 1960’s. The song is about laying down the hardships of life now and focusing on the good that is yet to come, especially in a spiritual sense.

This is something I still struggle with on a daily basis. Just when I go to “lay my burden down” I pick it right back up again. Hopefully, one of these days I’ll truly realize my hands are not big enough and I’ll “lay all of my my burdens down.” I do believe better days are ahead.

When I started writing this blog back in January of 2019, I wasn’t sure where it would lead. At first my goal was to focus on issues related to my disability. However, my life really isn’t defined by having spina bifida. Therefore, this blog has expanded to be a place where I can share my thoughts on current events, give insights on what living life with a disability is like, and just share humorus observations of the world around me. I hope you have enjoyed following me on this journey.

This particular post will be the 100th post that I have written. I thought in keeping with that, I’d create a list of 100 lessons that I have learned, observations that I’ve made, or opinions that I have formed. Every day there are new lessons to be learned and new experiences to be had. These are just a few of the things I have picked up along the way. Let me know if I have missed anything. Here is my list in no particular order.

100. Never take a hansom cab ride in New York City.
99. Never be afraid to try something new (except for that hansom cab ride in New York City).
98. Holding a grudge against anyone is pointless.
97. God will indeed give you more than you can handle at times.
96. Don’t ever give up. Things will get better. It might just take time.
95. Life is unfair.
94. Anxiety can make you feel like you need to do everything all at once. You actually don’t need to do this. Just slow down and take things one step at a time.
93. The smell of the air just before it rains is one of the best scents.
92. The smell of a baby’s head just after they have had a bath is THE best scent there is.
91. The love that a dog has for its master is one of the purest forms of love there is.
90. Losing someone that you love is one of the most painful things you can ever experience.
89. Working hard to achieve a goal is one of the greatest feelings that you will have.
88. Sitting outside in the winter in a place where there is very little, if any, light pollution and looking up at the stars on a clear night is something everyone should try at least once.
87. Going on a road trip with someone you love is a lot of fun.
86. Dorothy was right, “there is no place like home.“
85. Take time to pray every day.
84. Dirt tastes like dirt (yes, I have tried dirt before).
83. Beets taste like dirt.
82. Walnuts taste like dirt.
81. The taste of soap is not pleasant. (Yes, I have had my mouth washed out with soap. It was at church no less).
80. Cilantro tastes like soap.
79. Eating a bag of peanuts on a warm, summer day at baseball game is one if the most relaxing experiences there is.
78. Take time to listen to the stories that your grandparents tell. I am fortunate that I did. I will treasure these memories for as long as I live.
77. Learn about the things that have happened in the past. You can learn a lot from history.
76. You can never read enough books.
75. Learning to adapt to change is difficult, but it is well worth the effort.
74. Being a homeowner is both a blessing and a curse.
73. It pays to do things correctly the first time.
72. I’d rather have more time to do the things that I want to do in life than to make more money. Time is far more valuable than money.
71. There are still very kind people in the world. Many of them live in the U.K.
70. Listen to your parents. They know more than you do.
69. Do at least one thing you enjoy doing every day.
68. Never pray for patience. God just might answer your prayers in ways you don’t expect.
67. When working with others it is often best to let them speak first. You just might gain some new perspective.
66. Donuts are little bites of heaven.
65. Mashed potatoes are the best food ever!
64. Chick-fil-A is overrated.
63. Fountain Coke at McDonald’s is the best.
62. Hot McDonald’s french fries are the best.
61. The Blues Brothers is one of the best films ever made.
60. Somedays you just have to listen to the Beatles.
59. You will never get everyone to like you.
58. Pancakes made at home are better than you can get in any restaurant.
57. NASCAR is not a sport.
56. Everyone should make a trip to the ocean at least once.
55. Everyone should travel overseas. You will gain a new perspective on life.
54. There is nothing like a good night’s sleep.
53. Spending time in the mountains is one of the most peaceful things you can do.
52. Disney World is overrated.
51. Bacon tastes best when crispy.
50. Cats can indeed be needy (I live with two who are very needy).
49. Sunny days are the best kind of days.
48. Never have your eyes dilated on a sunny day.
47. You can’t properly eat Oreo cookies without a glass of milk.
46. Getting an unexpected package in the mail is better than gifts on Christmas Day.
45. No one has ever sang the National Anthem better than Whitney Houston.
44. No one’s instrumental version of the National Anthem has been better than Jimi Hendrix’s rendition from the Woodstock Festival in 1969.
43. September is the best month when it comes to weather, at least here in Illinois.
42. Rollercoasters are not fun!
41. There is no ceremony quite as somber as the “changing of the guard” at Arlington National Cemetery in Virginia.
40. Ken Burns knows how to make a documentary film better than anyone else. If baseball doesn’t start soon I might have to dive into his 23-hour epic on the sport.
39. Don’t ever try smoking.
38. Tell the people you love how you feel while you still can.
37. Sometimes you just need to eat a big, greasy, cheeseburger.
36. It is never too cold to eat ice cream.
35. Read to your kids when they are young.
34. Walter Payton is the best football player I ever saw play the game.
33. Hot dogs should never be eaten with ketchup.
32. Thanksgiving is the best holiday.
31. Christmas becomes less fun the older you get. However, I suspect this changes once you start having your own children.
30. One of the best sounds you can hear is a baby’s laugh.
29. Many of the best things in life are free.
28. Treat others the way you would like to be treated.
27. A soft answer often turns away wrath.
26. Sometimes it best just to remain silent.
25. Autumn is the best season.
24. Always apologize when you are wrong.
23. Michael Jordan was the best basketball player I have ever seen play the game.
22. Don’t argue about politics on social media.
21. Forgive others when they wrong you.
20. Don’t pour gasoline on a fire.
19. Voting for the lesser of the two evils still brings you evil.
18. Finish your work first then you can enjoy your play all the more.
17. You often get what you give.
16. Cynicism isn’t always a bad thing.
15. Always finish what you start.
14. Let your yes be yes and let your no be no.
13. Family is important.
12. Steak is best when cooked medium. Anything else and you cook the flavor out of it.
11. Help others when and where you can.
10. As long as you are alive there is always hope.
09. Nothing quenches your thirst better than water.
08. Admit your mistakes and learn from them.
07. Always tell the truth.
06. Don’t expect others to respect you if you don’t show respect yourself.
05. Every thing should be done in moderation.
04. Always say “please” and “thank you.”
03. You get what you pay for.
02. Fear can be a good motivator.
01. The love of a good woman is a very special thing.

Today I went to the store to purchase some toilet paper because were we nearly out. I did not do it out of fear that we were going to be quarantined for a few weeks. However, I would love to stay in my house for two weeks without leaving. There is a stack of books next to the bed that I need to start reading.

While I was in the store it reminded me of the days after the 2001 terrorist attacks here in the U.S. After those events, people lined up at gas stations waiting to be gouged for a few gallons of gas. It was fear of the unknown that caused people to act in irrational ways, much like it is today.

Why are we hoarding toilet paper in preparation for a virus that doesn’t appear to cause diarrhea? Shouldn’t we all be buying facial tissue instead? After all it is a respiratory virus that is circling the globe.

It was kind of alarming to see store shelves picked clean of all sorts of products. It was like being a part of a disaster film where everyone is awaiting some inevitable doom.

I am not trying to make light of what could potentially become a very serious problem. However, I just find human behavior very interesting in situations such as this. It is fascinating to see how organizations such as the NBA, MLB, and the NCAA are willing to sacrifice millions of dollars by cancelling or postponing major sporting events.

I pray that things do not get so far out of hand that we begin to turn on each other. If you see someone in need share what you have. If major sports leagues are willing to lose millions, we can all spare a roll or two of toilet paper to help a neighbor.

Don’t let fear of the unknown rule your behavior. If you are stuck in your house for a week or two, do something worthwhile. If nothing else, at least build a tower out of the cardboard tubes from all of those spent rolls of toilet paper that you inevitably will have.

Tag: fear

Peace of Mind

Laying My Burden Down

Rolled Up In Fear