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 seem to be living life one drip at a time these days. Four weeks in to being on IV antibiotics and progress is being made, despite the drip, drip, of time. The wound on my foot has healed, for the most part. However, there are still two weeks of antibiotics to go.
I am dreaming of the day when the PICC line will be pulled from my arm. If all goes as planned this should happen the week of September 21. After that I hope things will get back to normal.
In the time I have been down, Baby Boy has begun to crawl. This has presented some challenges, as I cannot always catch him before he gets his hands in to things where they don’t belong. For instance, he has sampled some cat food, explored the bathroom floor, and played with television remotes. I am hoping he hasn’t purchaed anything from Amazon while I wasn’t looking.
The next two weeks will drip, drip, drip on by and my left foot and my left arm will once again be fully operational. I can then be on full-time baby patrol every evening. I’m sure the cats will appreciate that. I know Amanda will, as she has been working overtime keeping our household running. Without her I’d be lost. She has been wife, mother, nurse, housekeeper, chauffeur, and friend all while holding down a full-time job.
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.
Recently someone asked us how our lives have changed since becoming foster parents. I don’t think Amanda or I have experienced any huge changes, other than we get fewer hours of sleep now. We are also not able to just take off on the weekends and go somewhere. Likewise, there is a lot more “stuff” in our house, such as a baby swing and toys. Finally, getting ready for work takes more time in the morning.
Starting out with a newborn was something we thought would never happen. However, Baby Boy has been very easy to raise so far. He is a gentle soul that seems to be happy most of the time. His smile is infectious.
Of course, for the first couple of months there were round-the-clock feedings, but that soon faded. He now is sleeping through the night, except for a few times here and there. I think Amanda and I picked up on his “non-verbal” cues pretty quickly. For instance, a demanding, unrelenting scream usually means he needs to poop. Watching this process is actually quite humorus, as there is a lot of grunting and contorting of the face.
When he wants to be fed, we usually hear a cry that is a bit less unrelenting than the “poop cry.” However, it is certainly enough to get our attention. Baby Boy is also very stubborn when it comes to burping. You would think we were asking him to go run a mile. He tends to stiffen up as flat as a board and starts to cry. This is when we talk to him gently to try and calm him down.
One thing that baby boy seems to enjoy is music. Just today we started to play music to help him burp. I think the song we chose is one we will stick with for a while. I am not sure why it popped into my head, but it is a song that is often played at Italian weddings. It is called the “Wedding Tarantella.” It is a pretty lively song, which probably confuses Baby Boy more than anything. However, he did not cry as he was burping today. The only problem we have now is that we feel like dancing while he burps.
Someday when he grows up I envision Baby Boy going to a wedding of an Italian couple. The “Wedding Tarantella” will play at the reception and he will be able to do nothing but burp. I hope I am there as well so that I can see what happens.
Baby Boy is a month old today. He is growing and becoming more aware of his surroundings every day. He is still ours and it is fun to see him grow out of clothes that fit him just a few weeks ago. Clothes he was once “swimming in” fit him just perfectly now. He is such a long, little boy. He uses those long legs to his advantage during a diaper change.
It is still difficult to imagine that one day he may be taken from us. This realization becomes harder to accept with each passing day. Amanda and I are his parents. We feed him, we clothe him, and we love him like he is our own.
Baby Boy and I have some good weekend “chats” as he lays on my chest in the morning. Of course, I am the one doing all of the talking. He just coos, grunts, and puckers his lips as he listens. I hope we can continue these “chats” for quite some time, as they help me relieve stresses of the week. Baby Boy is a good listener.
In those quiet moments of the morning he and I sometimes listen to music. He will be a Beatles fan some day, he just doesn’t know it yet. I think I’ll wait to introduce him to other favorites of mine later. Listening to Jimi Hendrix in the morning may not be as calming as the acoustic renderings of John, Paul, George, and Ringo.
Hopefully, Baby Boy is still here once baseball begins. There would be nothing better than introducing him to a game that I love. While I am not holding out much hope for the Cubs this coming season, it is always a joy to see Wrigley Field on the television. It would be a thrill to be able to take him to his first game there. The sights, sounds, and smells would have us both enthralled.
Amanda and I still have no idea how long Baby Boy will be with us. It could be a few days, a month, a year, or even longer. In the month that he has been, he has already left his fingerprints on our hearts. Our hope is that he is ours for a long time to come, but we know that may not be the case. In the meantime, he is ours to love, to teach, and to guide. God give us the strength to do all of those things.
It will be a week ago tomorrow that the call came. It was a call that would change our lives forever. We were in St. Louis visiting Amanda’s family for Christmas. It was so unexpected, however, it was something we have been waiting to hear for months.
The social worker on the line told us we would be getting our first placement as foster parents. Amanda and I never dreamed that we would be getting a newborn as our first placement. In fact, we had heard that it was such a longshot that we had prepared only to receive older children. However, God had other plans for us.
Last Friday evening we were told to make way for a day-old baby boy who had been born a month premature. Thruthfully, I think both Amanda and I were terrified. We have never been parents before. However, we now had two days to prepare for the arrival of the new life. Usually, people have 9 months. We had 48 hours! Fortunately, we have a wonderful support network of family and friends who have stepped up and provided many of the things we’d needed to take care of this precious new life.
After getting the phone call, Amanda and I decided we’d head home from St. Louis. However, that was not before Amanda’s mom and sister took us to Target for an improptu shopping spree. My only thought the whole time we were there was, “I know how to take care of my needs, but I have no idea how to take care of a newborn!” Reality was beginning to settle in. We were now going to be caring for another human being!
We had no information about the baby before we went shopping, other than he was a boy. Therefore, we did our best picking out clothes, diapers, and other items we would need. Once we were loaded up, Amanda and I made a late-night trip back home from St. Louis. The following day was spent preparing our home to welcome this new baby boy.
We also had friends from church stop by to drop off items for the baby. Family came as well to bring things to help us. The outpouring of love and support from church and family has been a blessing.
As foster parents we are not allowed to divulge much information about this tiny boy who has come to capture our hearts. He is a perfectly healthy baby who has already brought lots of joy and laughter to our lives. There have been many hilarious moments in just a few short days. For instance, the baby was circumcised before he left the hospital, which led Amanda to note his “penis looks angry.” Being a huge fan of bathroom humor this only made me laugh.
Being foster parents your heart goes out to the biological parents. They have had their child removed from their care. Despite what we make think of these people, it still makes us empathize with how they must be hurting. However, it is such a great feeling to know Amanda and I can provide a safe place for this little boy. He has only been with us since Sunday afternoon, but he is already loved so much. We both love holding this new life in our hands. It is impossible not be thankful for being given the opportunity to care for this defenseless little boy.
We are getting a routine down. Feedings are becoming easier, sleep deprivation is starting to feel normal, and being peed and pooped on is no big deal. In fact, I have been quite inpressed with this little guy’s skills to shoot poop around the room. We have learned quite quickly to use a shield when changing diapers.
Amanda and I do not know for sure how long we will have this baby boy, but we hope it is for a while. He already means so much to us. He will be loved and cared for as long as he is with us. He is a gift that came to us at Christmas. This baby boy is the greatest gift we could have received.
Put the Crippled Kid up Front... 