Category Archives: Jackson

Jackson’s 12th Birthday

Just kidding…that would be illegal!

My dear sweet boy just turned 12.

And with every fiber of my being I cannot express what this age, more than any of his other birthdays, has made me feel like. See I’m the Mom who posts the “Happy Birthday” on social media at midnight the day of.  But this year, I just couldn’t. It’s been 5 days since I have been wondering why I just couldn’t get myself to do it. And then I figured it out.    

THIS IS WHY-

Friday was an ordinary day, but it was also an absolute milestone of a day.

 I was feeling the complete and utter excitement that although Jackson is affected with Duchenne Muscular Dystrophy, for the most part he is doing well and is still able to walk and is healthy.

 It was also the lump in my throat and the pit in my stomach of the realization that he is getting older. It felt like a hit to the stomach, you know the kind… where you get the wind knocked out of you. It was the worry that with each passing year he is nearing the age that so many DMD boys lose their battle.

It was the reminder that due to various difficulties we are unable to have full baseline data on the condition of his heart. It’s the fear of this Covid-19 pandemic causing him respiratory issues. See, for DMD boys, cardiac and pulmonary issues are what takes them down. It’s the realization that this past year DMD has really reared its ugly head. It has caused many changes within Jackson.  We are noticing his facial features exhibiting Cushing’s Syndrome (from chronic steroid use), a stop in his growth, and severe concerns about his bone health with the recent news of his osteoporosis. It’s hearing his doctor say that is he takes a fall, he may never walk again. It’s driving across state lines to pick out and order a handicap accessible van. It’s re-designing a home so that he has a space that’s completely wheelchair friendly so he feel’s safe and secure. It’s so many things when you have a child with DMD.

And then it was the beautiful smile on his face when he woke up to see a house decorated by his little brother with balloons everywhere. It was the joy of him and I building a cake together to see JUST HOW TALL  we could make it before it collapsed (we got to 6 layers), it was making his favorite meal of stuffed shells together, it was the excitement of him opening his presents to reveal dinosaurs, platypus’, pokemons, and board games. It was him cheering that he even got some cash. It was the combination of a brutal and beautiful day…….Brutiful.

And then he came over and gave me a hug and said “Thank you Mom for making my birthday so special” and that was all it took. My heart just about burst with love. Because although I feel all those other feelings, the greatest of them all is LOVE.

Happy 12th birthday to my beautiful boy.


Halloween and kindness from a stranger

When Halloween came around this year we were all set with our costumes. Jackson was dressing up as Perry the Platypus and yes it was a homemade costume that my dear friend made for him! It was a replica of his favorite stuffed animal, a beanie boo named Perry.

Little brother was going as an inflatable dinosaur. I was going to be a skeleton, but that day during clinicals, I had one of the worst days of the year and came home in tears. I most definitely didn’t want to go out in the terrible weather we were having that day, which was high winds and rain, to go trick or treating. I sat the boys down and we discussed our options. They quickly both agreed that they didn’t want to deal with the weather either and would like to pass out candy.

Once the time came, they happily handed out candy and then about 3 minutes in…little brother realized that he wanted to just run to a couple nearby houses to trick or treat. He did that and Jackson and I continued to pass out candy. About 4 minutes after that Jackson saw kids running around outside and noticed that the rain had stopped. He asked if he could then go trick or treating.

So I forfeited my costume for warm clothes, Jackson and his little brother forfeited their costumes because 1) an inflatable costume + high winds= TROUBLE. and 2) a homemade platypus costume once wet will be like dragging heavy material around. So we got out our old costumes and Jackson grabbed my old dinosaur costume and his little brother grabbed Jackson’s old corgi costume. We headed out in the cold and wind and within 5 minutes it began to rain again. I had jackson’s new mobility scooter with me and let him know that whenever he needed it, it would be available.

We walked around the neighborhood for about 20 minutes and Jackson began getting very fatigued. He took a rest in the stroller and I pushed him around for the rest of the night. What happened after that became quite interesting to me. As I pushed him up to the various houses people made random comments like “can he get out of there” (they didn’t want to have to walk off their porch). Another person said, “ahhhh…i don’t want to walk over there because my socks will get wet”. This happened over and over again. To the point that little brother began getting the candy for his brother. Then Jackson just gave up. He said “forget it, i want to go home”.

We began heading home and we were cold, wet, and tired. As we rounded the last road there were a few houses with their lights on. Little brother ran to one and I kept pushing Jackson. Then all of a sudden I looked up and saw an older gentleman walking not only out of his house and onto the porch, but walked all the way down his driveway. He came right up to the boys and told them to pick as much candy as they wanted. Jackson took one. He said to take more, but Jackson insisted on just one. I thanked him and we made the trek home.

It was such a simple, yet profound thing that this gentleman did. He was observant and although he didn’t know the situation, he could tell that something was different. And here’s the biggest part…..HE DID SOMETHING ABOUT IT.

The simple act of making the situation easier and not drawing attention to it. Just acting and making such an impact in our life.

This man probably had no idea how it impacted us since Halloween. I have thought about it constantly and how when the holidays rolled around I wanted to do something as a ‘Thank You’. So I recently got some chocolate chip cookies together and made a little gift basket up and wrote down the story in a card to deliver. I went over to the house and knocked on the door. A man answered and I wasn’t sure if it was the same person or not, so I introduced myself and asked if it was him that was there on that Halloween night. He said that it was his Father who had been there.

I told him that his Father is a good man and told him the story of what happened and how that simple act of kindness made such a significant impact on our lives. How grateful we were. He remarked “that’s my Dad”. Of course when I began talking about Jackson and his struggles with Duchenne Muscular Dystrophy I began crying. I then finished what I was saying, handed him the cookies and card…and by this point his 2 daughters had gathered to hear what was going on.

I am so very thankful that kindness can be found in negative situations. I am grateful to this man who went out of his way when he didn’t have to. I am also glad that i took the time to acknowledge this individual and hope that others can become aware and less ignorant when they see someone who may be different and instead of judging or turning away, they lean into the situation and try to help in any way possible.


Transitions are hard

Lately my Mama heart has been hurting. It has taken me a couple weeks to process it all and to gain my strength to discuss it. Jackson had his check up with his team at Nationwide Children’s Hospital. It was imperative that he have a cardiac MRI due to his age with Duchenne and to gain the best information as to how to treat him. After a very long day and many attempts we were not able to get the test completed and Jackson and I left in tears. Tears because just getting the IV in is typically a huge challenge. It went flawlessly and just went I took a breath, the staff was telling me that the test needed to be stopped due to Jackson’s inability to remain still and to come back in a year to try again. 

My heart just broke, my tears flew down, and my anger built up. My mind screamed  “I am tired of hearing maybe next year….what if he doesn’t have a year”. After much discussion, frustration, and tears we left. 

The next day went a little smoother with positive results from PT and pulmonary. Jackson’s doctor was pleased with his muscle strength and continuing ability to walk. More tests were done and it became blaringly apparent to me just how much Jackson is struggling right now to get around. How in the last few months he has changed and not for the better. It hurts my heart because this is the age that most children are transitioning to even more independence, and I am constantly reminded of all the things he cannot do or won’t be able to. That day the doctor told me that even though Jackson is stable, if he takes a fall and breaks a leg then he will not be able to recover and that he will lose his mobility and will be in a wheelchair. He told me to begin the process of getting him fitted for a power wheelchair. 

There is a moment when something is told to you….something that you have known will be told to you for YEARS, yet when you are face to face hearing the words being spoken to you….it is heart breaking. I am typically a very positive person, but when a transition of this nature is on the horizon, it is frightening. Frightening because lots of conversations need to be had, modifications need to begin, and emotions are running high with worry over how he and his brother will handle it all. 

It has been a challenging few weeks for our family with worry, concern, fear, and trepidation entering into this new chapter. I pray daily that Jackson will continue to have his strength and to keep walking, but I also understand the progression and nature of this DMD beast and unfortunately I do not think this is a battle we will win. For now, we will take it one day at a time and love each other tremendously through the process. 


next page »