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Choosing Grace

Christian & Chris Ulmer
My family was honored with a special opportunity this past weekend. We got to meet Christopher Ulmer with Special Books by Special Kids  and be interviewed by him! Christian did a great job being interviewed and Chris really captured Christian's joyful spirit and laughter! (You can watch that interview here.) The video got over a million views in less than two days, which is awesome! But lots of exposure also always seems to bring out those who are jerks not so supportive. *sigh*



It always depends on the situation how I respond to these things. Sometimes I just don't at all, for the sake of our safety or if something just seems really off. However, when appropriate, I have decided that I won't sit by and stay silent. Maybe it's the lawyer in me, but I don't feel like change will ever happen if no one speaks up. It's bigger than Christian. Christian isn't the only person who has been targeted and run down based on their disability. He wasn't the first and he won't be the last. But in the meantime, I want to do what I can to address this issue.

The issue is the belief that people with disabilities are inherently miserable because of their disability.

The issue is the belief people with disabilities are better off dead.

The issue is the thought that people with disabilities are worthless and add nothing of value to society.

The issue is the idea that permeates to the core of our society that people with disabilities are less than other human beings because they have a disability, that they are somehow a substandard class of people who don't deserve the same basic human rights as others.

I want to put it to rest now. All of these things are WRONG!

To the Melodies of the world: You are wrong. You are as wrong as wrong can get. You are wrong about Christian and you are wrong about the value that he possesses. I feel sorry for you that you miss out on such an incredible person as him. Your words have no power over Christian or over who he is. You can continue to talk and it will change not a single thing. You will still be an adult talking down about a five year old disabled child and he will still be a five year old who has changed the world. 


                                                                                                                         

So, let's start with the original comment, exactly what was said. Someone shared the video I referenced above and shared this with it:

                    "Why would you want a monster for a child. How embarrassing to walk 
                     down the street. How selfish of the parents to allow that kid to walk 
                     around frightening everyone in his path just because they don't want 
                     other people to think they're bad parents." 

I wanted to address this the way I know how, piece by piece, as any good lawyer would do.

Why would I want a monster for a child?
Besides the fact that I'll add the question mark she forgot, because proper grammar, I suppose the important word in this sentence is "monster." So, what exactly is a monster? Her obvious definition of a monster is a five-year-old child with a disability. So scary!! I'm terrified already.

But, let me explain a little about my definition of a monster. A monster isn't the thing hiding under my bed, like I thought when I was six. Monsters are around us, cunningly disguised as humans. Except these humans laugh at the idea of causing pain. They take joy in creating hurt. They revel in looking down on their fellow man, because it somehow makes them feel elevated. 

I'll never understand this type of person/monster, but I know they exist. I've witnessed them first hand. 


So, who here is a monster? I think it would be hard for anyone to argue that a joyful, happy, music loving, joke telling little boy is. 


I'll address the next two things together. How embarrassing and how selfish. I'll put this one to rest quickly. How embarrassing? Not at all. Zero. There is exactly zero embarrassment felt when out in public with Christian. And how selfish? Also zero. I would like to invite Melody to spend a day with me and Christian, and see how selfish I get to be. I barely get time to shower for myself. Being the mom of a special child requires a selflessness that I didn't even know I had in me. I don't wake up every day and want to give of myself so much that it leaves me with very little, but I don't get to make that choice. I'm not special in that respect. It's what any decent mother does. She gives her children what they need. Mine so happens to need more than most, so that is what he gets. It's fairly simple and straightforward. 

Next concern, frightening other people. Again, here we are dealing with an adult who's idea of scary is a five year old with a disability. I'm not sure what type of life she's lived to think this is scary, but I've seen much worse in my 29 years. Frightening is standing next to a hospital bed holding your child's hand, praying they don't die. Frightening is reading comments from people who judge and hate a child based solely on his looks and realizing that your child has to grow up in a world where this type of human being exists.  But a child with a disability. I can't say I've ever been scared of that.



Finally, the thought that I do what I do out of shear concern that someone might think I'm a bad parent. Hmm...well, my first thought on this is, someone, somewhere, already thinks I'm a bad parent, so that kind of puts a hole in that theory. I'll never be perfect. I'll never do things exactly like another mom. Some sanctimommy is going to judge me for having Christian's car seat chest clip 1/3 of an inch lower than she thinks it should be. (Yep, that has literally happened.) See, I don't care if people think I'm a bad parent, because people are going to think whatever they choose to think about me regardless of what I do. I can have some influence over that at times, but sometimes I can't. And it's a good thing that it doesn't bother me because I don't do what I do for my kids to get the approval of strangers. I do what I do because I'm their mom and that's my job. This is how love works: when you love someone, you care for them. When you care for people who are small humans, you take care of them by taking care of their needs. When you take care of their needs, you don't pick and choose what you will do and what you won't. You also don't pick and choose when you will take care of their needs and when you won't. If it's a need, you just handle it. 

See, real love doesn't have conditions attached, or then it's not really love. It's a reward system where as long as they do what you want or be what you want, then you will gift them with affection or attention. Real love doesn't have that type of nonsense attached. Real love accepts a person as they are, imperfections and all, and provides that affection, attention, and nurturing they need. That's not to say that character flaws are just overlook and ignored. Those things are dealt with and worked through and addressed in love. But real love doesn't have a list of standards someone has to meet before they get that love. 

That's the difference between Christian and Melody. At first glance, it would seem that Christian is the more unfortunate of the two, because of the preconceived notions that people have about those with disabilities. But, that's exactly why I write this. I would rather my child be physically blind his whole life and know unconditional love than have him be perfectly-abled and be filled with the amount of hate that some people, like Melody, possess. Let's be honest, it must eat her up on the inside to constantly be so angry and ugly. It takes a really miserable and unhappy person to want to hurt an innocent child. It takes a person who is really hurting to want to cause other people such hurt.


A disability isn't a death sentence. It isn't a recipe for misery. In fact, people all over the world with  disabilities are living happily and well loved. Our society has this idea that it is more desirable to be dead than to have a disability. Can I just end that now and say IT'S NOT!!!! Think really hard right now about someone you know who is unhappy with their life. We all know someone like that. Now think, do they have vision or are they blind? I hope the lightbulb just clicked on for many of you. Having vision does not guarantee a happy life. Having a fully abled body does not guarantee a happy life. There are people all over the world who are miserable yet have perfectly abled bodies and minds.  So, why do we think the reverse exists, that having a disability guarantees an unhappy life? It doesn't. It doesn't. IT DOESN'T!!!!!!

I can't fathom the type of thinking that goes into comments like Melody's. I can only guess that people capable of this type of thinking have not experienced unconditional love like Christian has. And that's unfortunate. THEY are unfortunate. Because that is a basic need we all feel, the desire to be loved. And maybe sometimes when we don't get that desire fulfilled, we try to fill it the only way we know how, by making other people as miserable and hurt as we are. 

So, to wrap this up, Melody seems to think that she knows a whole lot about me, my family, Christian. She made some claims that she knows how much I lay in bed and cry, how hopeless I feel. She caught me huh? I sit in bed and cry at night over how blessed I am to get to be Christian and Chandler's mom. Tears of gratitude do flow from time to time. I also wanted to share a few photos as examples of the hopelessness that I carry and how miserable Christian is. How much he obviously hates me for letting him live, for sharing his life with others, for having a disability. 

Her words for me (I won't type it all out because it's really long and rambles some, but I'll cover the parts that stuck out to me. A "..." indicates breaks in the paragraph): Lacey I know you lay in bed and cry. I know you feel as if you have no options I know you feel hopeless. But I'm here to tell you that you are a selfish human being...I do not give a single damn about your son since there are so many other children that need help and that need love but don't get it...Raising a child with this severe of a disability is detrimental to society because it's not right. It's not the way it's suppose to be...I'm not a hateful person. 

I won't rebut this particular part because there's just so much nonsense that I white girl can't even. But,  please enjoy these pictures of me laying in bed and crying and feeling hopeless. 

I am so miserable to have a loving family



The misery we experience is all consuming at times. 

See the look of hopelessness on my face? Holding up my new book. Ugh!
Hopelessness abounds at my law school graduation where I received my doctorate degree. Laying in bed and crying, I'm telling ya.

That isn't pride on my face, that's hopelessness. 
Yep, pure misery.

Finally, I just want to address one more thing, "Raising a child with this severe of a disability is detrimental to society because it's not right." With such a logical and well articulated argument Melody made here, it's hard for me to think of a rebuttal, but alas, I found one!

Christian is everything that is right in the world. He is innocence and joy and love and happiness and beauty, all wrapped up in a little 39 pound frame. The Melodies of the world are all that is wrong with it. The answer to the wrong is love.

So, even though our first instinct is to lash out at the Melodies of the world, let's take the high road. Let's exhibit the love toward her that God has shown us. It doesn't mean we have to stand by and let her attack us. Obviously, I am addressing that here and dealing with it. But it does mean that I can forgive her and pray for her. Please join me in praying for the Melodies of the world.

Where sin did abound, grace did much more abound. The Melodies of the world are not so far gone that they can't be reached by an all-loving God. Sometimes in our hurt, when we see people dripping poison like she did, we don't want them to be reached, but Jesus died for all of us, even the ones who don't know it yet. He came so that none of us would perish, Melody included. We can't let the hurt that others cause us turn us calloused or hardened. We also can't let the poison that gets tossed about discourage us or make us second guess our purpose. We must keep pushing forward for the good work of the Gospel of Jesus Christ. I must keep moving forward to spread the message that Christian
teaches, so that one day, all people of all abilities will be seen in the same light and treated as equals. God is good, even when people are not. And Melody could keep on spouting hate about Christian until her last breath, but what would it mean for Christian? It certainly won't take away his joy, his intelligence, his love for life, his silly jokes, his purpose. It won't take away the fact that he has changed the world for the better in his short life; that he has brought hundreds of thousands of people together in a community of support; that he gave me the motivation I needed to get my Juris Doctorate; That he can tell a joke and make hundreds of people roar with REAL laughter; That he has been invited to travel the country and appear on national television because people want to know him better; that he is the topic of a book that is projected to reach the New York Times Best Sellers List; That he has encouraged and inspired hundreds of thousands, if not millions of people. That's an impressive list for a five year old.

I am old enough to know not to let one ignorant person ruin my whole day, and I am wise enough to realize the people who deserve love the least need it the most. 

So, I am at peace with the fact that Melody's will always be around, but maybe, just maybe, I can reach a few of them. Maybe the love of God can reach a few of them. 

Comments

  1. I have loved watching this gorgeous little boy grow up from Australia...you are doing a perfect mummy job Lacy

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  2. You are a awesome mother! You and your husband have Beautiful children ! I have been watching Christian on Facebook for a long time I love your family , God bless you all , the devil will always be under your feet , in Jesus's name

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  3. Very well written Lacey. Christian is a delight to follow I look forward to reading your posts on face book. I am encouraged by your faith, wisdom and strength that you possess. Thank you for posting on face book and allowing me to watch Christian grow into a wonderful, loving young man.

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  4. Lacey, you are so HUMANELY mature. Your atributes have been there since the beginning (can't fake morals) but I think they have been accelerated and multiplied because of your life with Christian. Perfect thoughtful response!

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  5. Thank you Lacey for posting this and AMEN to all you said. Christian is a beautiful little boy who is the definition of love...and he is loved by so many. You are so right in NOT letting any horrible comments made by anyone steal not even a moment of your peace. God bless you and your family always...

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  6. Lacey, you are so HUMANELY mature. Your atributes have been there since the beginning (can't fake morals) but I think they have been accelerated and multiplied because of your life with Christian. Perfect thoughtful response!

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  7. Very well said Lacey. I too am a mommy to a special 12yo boy. Like Christian he has the most beautiful and contagious smile. One that makes life all worth it. Thank you for sharing your family.

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  8. I love your faith and it's a joy for me and my family to read your blog. Love and prayers for your sweet beautiful family.

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  9. From another mom of a disabled young man.....VERY well put!!!

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  10. Lacey, that was so well said. I have enjoyed watching every step of Christian's walk in his 5 short years. I never got to see Christian after your first posts of him. It was a year or so later. Imagine how much reading I had to catch up on because of your story Lacey. LOL! It has amazed me and brought me an understanding about the disabilities in this world. Not that I was unaware of them but the extent of some. Christian is by far the strongest, littlest boy that I haven't yet had the pleasure to meet. I have his book on hold through Amazon. Any chance that ya'll will be around Indiana PA to tell your story? :) I will never understand the Melodies of this world but isn't that a type of bullying? I don't know if I would have had the restraint you showed. Another question. Why was this Melody even on your page? Just to rant! Wow, very disturbing. Praying for the cruel people in this world would mean praying 24/7/365. One prayer, and I need move on to my priority prayers.
    Dear God in Heaven, watch over these negative people. Give them understanding and selfless thoughts that only You can show them. Teach them compassion and empathy for those around them. In Jesus' name, Amen.
    Lacey, you are one strong woman. Your entire family have my prayers. One more question though. Why is Chris not in as many pictures? He doesn't seem to get told that he is an amazing dad from all your followers. So, with that being said: Chris, you are an amazing dad. You have an amazing family. TO CHRIS, LACEY,
    C-MAN AND CHANDLER......God Bless you all.

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  11. My son is 8 with high functioning autism and ADHD and I wouldn't trade him for the world! I feel blessed just to know what God has done for me to be able to be his mother! I feel blessed to be able to follow how strong you and Christian and your whole family are! Love you all keep blessing the world with your bright faces!!!

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  12. My son is 8 with high functioning autism and ADHD and I wouldn't trade him for the world! I feel blessed just to know what God has done for me to be able to be his mother! I feel blessed to be able to follow how strong you and Christian and your whole family are! Love you all keep blessing the world with your bright faces!!!

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  13. Wow. Just wow. People with no empathy or understanding for differences are what frighten me. I just can't wrap my mind around that kind of belief. I think your boys are wonderful. My boys love seeing updates of your boys. Keep doing what you are doing.

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  14. Years ago a woman was told that her baby will not be normal and recommended termination. That mother did not take that advice. That baby boy's name is Andre Bochelli! Google his name if you are not familiar with it.

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  15. OMGosh, I remember when we first learned of Christian. It was probably 3-4 years ago. I was reading about him to my daughter (now 7) and showing her pictures of him. She asked if she could have a play date with him. So cute!
    It is the nasty, hateful people who are the monsters.

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  16. You are more courageous, hard working, and loving than most people ever hope to be. I pray that you, Christian, and your family never lose your joy and never let the Melodies of the world dim your lights. You are absolutely right, you and Christian have both changed the world through every single person you have touched. God bless you all! :-)

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  17. When they go low, we go high!
    Kudos to you Mama! You are amazing!

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  18. He is a beautiful little boy and you are a beautiful, strong, caring mom doing the best she can for her son and you are doing a damn good job. Don't let the "real" monsters get to you!

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  19. You have been an amazing inspiration as I have followed your family's story. As a mother with a child with an "invisible" disability I used to wish that people could see her immune deficiency; that she and I were judged so often.They couldn't see it - therefore it didn't exist. How taken back they were when I asked if they believed in God. You can't see Him right? So many judges around it is amazing. You have shown so much grace!

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  20. Wow! I'm don't think that I could put your answers to this lady in any better way! Very will writing and very will put! I've been on your fb forever! Love seeing your guys pics, the daily strugglers that u guys all face! You guys are great parents! God sure did give this wonderful child to the right mommy and daddy! ;) Keep up all of the wonderful things that u guys are doing for your boys, for each other( husband and wife) and for the world! I thank you for all of this and so does God!

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  21. Sweet Lacey, you handled this lady perfectly! To show her the love of Christ in you instead of hate, shows the wonderful kind of person you are! I have loved and enjoyed so much watching your journey with Christian. To be able to watch this precious, amazing, funny, adorable, handsome young man grow has been a privilege! Thank you for sharing your beautiful child with the world! May God continue to bless you and your family! You truly are blessed to be his mom!

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  22. Melody should tell Stevie Wonder or Steven Hawking what a waste of breath they are and see what they say about her warped way of thinking. Christian is God's gift to us all. He has changed the thinking of many people and will continue to do so throughout his life, because I think he was born to do that and anything else he puts his mind to. I believe they told Helen Keller's parents to put her in an asylum, but because they didn't listen to those Melodies, she went on to be great. Christian has every opportunity to do the same. Keep being the awesome parent you are, Lacey; you are doing it right!

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  23. Lacey,You and Christian have taught all of us about unconditional love.Thank you for letting each one of us love Christian and you like family.Watching the all the ups and downs ,tears and cheers of all the hurdles Christian has accomplished.You and your husband are GREAT parents to those beautiful Lil boys.

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  24. You may have just told me exactly what I've needed to hear for a long time!! Amazing how well you handled her.. So sad to hear how you're sweet boy was talked about.. Saddens me.. God bless your family!!

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  25. That was put so very well. I always teach my kids that everyone is to be treated equal and God makes everyone the way he wants them to be. My girls like to be updated about Christian just as much as I do. Thanks for sharing your amazing life with your beautiful loving fun son and family with us. It actually helps my girls go out in public places and play with disabled kids that most other kids wont play with so thanks for helping me teach my girls God makes all of us how he wants us.

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  26. I came across this in my FB newsfeed. You wrote this so eloquently. Much more so than the "Melodies" deserve. I agree, the monsters surrounding us every day are the frightening ones. My son has Down syndrome and, thankfully, we've never encountered such ignorance and heartlessness. Good for you for speaking out. Christian deserves that. All our kids deserve that.

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  27. Imagine this scenario: You're 9 mos. pregnant and go to the hospital to deliver your child, but stuff goes wrong and you have a c-section. Your 7 lb son stops breathing so the dr. resuscitates him, but then his heart stops. So the dr. does CPR and the heart resumes beating, but the child stops breathing. The scene continues for 5 more mins., but the dr. decides your son "probably" has brain damage, lays him on a table, and let's him die. After you awake from anesthesia your dr. tells you what happened, but assures you the child is better off dead because he "probably" had brain damage. One week later you name your son Aaron and bury him. Monsters are everywhere, even in places you would least expect them.

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  28. Such a beautiful message to everyone who loves your story, son,and family. But also a very classy rebuttal to an ill-minded individual. Thank you for sharing this. God Bless you and your family.

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  29. Lacey you have tackled the Melody's of this world head on and I applaud you for that. Your response was great and I thought could not be more perfect. You have an awesome family and you are a wonderful mother. Christian is a beautiful little boy without a doubt, but I think he is even more beautiful because of his disabilities, I love hearing your stories about Christian, Chandler and all of you. I agree that there are monsters all around us everyday, even when we don't realize it. I have two special needs boys and I wouldn't trade them for the world, even on the most difficult of days. I know that there are people who can't understand or believe "there is no such thing as special needs people", especially like in the case of my boys the disabilities can not be physically seen. Knowing how cruel people can be makes following you and other parents of special needs children so important to me. Through you and your posts I feel connected and it helps to give me strength to pull through. So Thank you for sharing you and your family with all of us. I really hope to be able to meet you and your beautiful family someday. You are a remarkable woman. God Bless You and your family.

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  30. Oh wow!! Your reply... Amaze-balls, as my daughter would say.
    I've been following your journey for about three years now and I can safely say that your posts are an important part of my day.
    Christian is sweet and precious, so full of love and the will to move forward.. some people only see the outside and never get to understand that the person is bigger than any disability.
    My son is currently awaiting diagnosis...we think he's on the autism spectrum. My son doesn't look "disabled" but when he gets a meltdown in public, people still judge..a lot. It hurts, when people do that , but it also reminds me why I'm here,to make sure my gorgeous boy never, ever gives up.
    I don't always take the high road either; I've had arguments with such people countless times too.
    I love my son to bits, the way you love Christian and I can tell the Melody's of this world that the only reason why I lie in bed awake at night and cry is because of tw*ts like herself. People like her scare me, because they are the sort of people who will hurt my son, and have no remorse.
    Big big big hug to you Lacey, and to Christian and as we say 'kunu imberkin' (bless you). You're doing an ama,ing job, love; don't you ever forget it!

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  31. Oh wow!! Your reply... Amaze-balls, as my daughter would say.
    I've been following your journey for about three years now and I can safely say that your posts are an important part of my day.
    Christian is sweet and precious, so full of love and the will to move forward.. some people only see the outside and never get to understand that the person is bigger than any disability.
    My son is currently awaiting diagnosis...we think he's on the autism spectrum. My son doesn't look "disabled" but when he gets a meltdown in public, people still judge..a lot. It hurts, when people do that , but it also reminds me why I'm here,to make sure my gorgeous boy never, ever gives up.
    I don't always take the high road either; I've had arguments with such people countless times too.
    I love my son to bits, the way you love Christian and I can tell the Melody's of this world that the only reason why I lie in bed awake at night and cry is because of tw*ts like herself. People like her scare me, because they are the sort of people who will hurt my son, and have no remorse.
    Big big big hug to you Lacey, and to Christian and as we say 'kunu imberkin' (bless you). You're doing an ama,ing job, love; don't you ever forget it!

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  32. As sit here at 1:30 in the morning and come across this, I wonder just where the lady thought you were raising a monster? When I look at your child, all I see is a child who is well loved and happy. Why in the world would anyone in their right mind say such ugly things about a child or the parents that are raising a child with disabilities??? Truth is everyone has some type of disabilities whether it be physical or socially. The world would be a tired and sad place if all people were treated this way. I have always believed that if you are fortunate to give life to a child then you do everything in your power to raise that child. I was always told that God would not give you more than you can handle. And Lacey, you are handling it very well. The love you have for Christian out shines the brightest day. Keep posting that sweet child singing and telling his jokes. Know that your child is loved by many people.

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  33. Dear Lacey,
    You have no idea how encouraging you and your family are! Well said. I have a bilateral Oro-ocular cleft. But I also have the family the commenter was talking about. My family don't like me, and one used my hospital bills to defraud friends and extended family. My family WERE selfish. And yet... I'm happy! It has been tough at times, but God has had my back all the time. I do have a facial disability, but I also have rich friendships, a job I love, I live in a great house and I even have strong, robust self confidence. Christian and Chandler are awesome kids with awesome parents. :) Bless you all! Bel

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  34. I am also the mom of a disabled son. Ours was from a car accident. No matter what difficulties we have faced, we never skipped a beat. God gifted you with your beautiful son, inside and out. I do understand your trials of daily life, and I know that you, as do I, feel blessed and firmly grounded. God knows what he is doing when he blesses certain people with special needs children. He picked the right one in you.

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