Battles against terminal illness, anxiety, and life!

Posts tagged ‘A-T’

To Newly Diagnosed A-T families.

I often think of our children who have A-T in generations. Every year of an A-T child’s life is approximately five for the rest of us. That would make my seven year old nearly thirty five. Although I swear to you he ages me as quickly as he “ages.” About a handful of parents new to the A-T diagnosis contact me each year. It is so hard to feel how heavy the weight of the diagnosis is on them. After Braden’s diagnosis we were in heavy mourning for about a solid year. Extending a hand to these families, while heart breaking, makes me feel as if I can help in some small way. It’s not a fun club to belong to, but there is much we can share with each other. We are now four years out from the day he was diagnosed. What’s life like now compared to then?

When your child is first diagnosed it feels as if there is a giant elephant in the room. However, slowly but surely he finds a quiet corner to sit down in and makes himself as unobtrusive as possible. Oh there is no ignoring our elephant and he seriously smells. He wreaks havoc on most days, but we have learned that there is no getting rid of him so we might as well learn to accept him. In short, we have learned that A-T is a giant beast of a diagnosis. It is a heart breaking soul crushing situation to be in to know you will outlive your child. We have learned that despite the hardships we can and will persevere. We have learned that it is very easy to become negative. Parenting is a tough enough gig to start. Throw in cyclical vomiting, oculomotor apraxia, dysarthria, incontinence, tremors, and more big long words that we didn’t really understand in the beginning and it’s easy to get overwhelmed. Hang in there! You will learn them all and can do this!

So, wait, am I saying I am at peace? #$$%@^$ No! Gah! No, what I have learned is that a code word is needed with friends and family to let them know A-T is getting the best of me and that I may need a bit of grace, an extra hand, or to leave the room unexpectedly. After all, I don’t want Braden to see me crying over A-T. Not the way in which A-T makes me ugly cry. So, we get the sniffles over here. I’ve learned that sometimes you have to “do” and not “think.” I’ve learned organization is key where school and doctors are concerned. I’m thankful for every time my parents didn’t yell at me for questioning authority in a healthy way. If they hadn’t, I doubt I would be as capable of questioning doctors and administrators without fear. I have learned to embrace our family’s uniqueness. We have developed a twisted humor that most wouldn’t understand. We’ve also learned to seek out the happy and to do things now. You will get there.

We’ve learned that we don’t have to raise the next Harvard grad. We have to raise a child to be happy, as healthy as possible, and respectful. That’s somewhat liberating! We remember to take notes from those generations before us as well. Ask for things before you may need them as it will lay the foundation. Plan holidays and traditions now in preparation for how things will be. For example, move furniture now to be more handicap accessible later. Teach younger siblings to keep toys out of the main pathways so wheelchairs may go through them. Move Easter Egg hunts inside or have places outside where eggs are hidden at a height in which the child won’t have to stoop down. Start eating foods in fun ways that the kids will need later. We started drinking soup and other foods from coffee mugs. Spoons are really hard for our kids! We preemptively strike! This will eliminate “losses” when they can no longer to do these things. He didn’t use a spoon to eat soup! So, no loss. Just remember to not compare A-T kids. There are varying levels of both ability and health.

We’ve learned that when they say that your child will experience a rapid decline at age five they REALLY weren’t joking. That free fall lasted a year and a half. We’ve learned that it is terrifying and just how much of a team we need to be under this roof. We also learned how important counseling is. Take care of you so that you can take care of them. It’s the whole “Put your oxygen mask on first” philosophy. Stay as solid as you can in your marriage. A-T will expose every crack in your foundation! Know that you will most likely lose some friends. It will hurt. However, the friends that remain are the ones that deserve your respect. Learn to forgive those that walk away. It speaks more loudly of them than it does of you. Keep your chin up!

If you need a shoulder, please don’t hesitate to send me a message. I will listen. You are not alone.

You Scream! I Scream! We all Scream for…

Today Braden looked at me and said, “Mommy, I want hot fudge sundae.”  It was seven in the morning.  Hey, I’m all for ice cream for breakfast, but there’s no hot fudge in the house.  So, I told him we’d have to see what we can do.  We did go for that ice cream today.  Both of my parents joined us for the fun too! 

We sat down, and Braden was so excited to have exactly what he wanted.  He picked his spoon up and tried to bring it to his mouth.  His eating has always been clumsy at best.  Although, clumsy might not be the best word to use.  He has poor motor control, and eating has always been difficult.  However, today Braden’s tremor was painfully obvious.  His ability to get the ice cream from the cup into his mouth was seriously compromised, and it was extremely painful to watch.  With each attempt, Braden’s frustrations mounted.  So, my  mom went and got an empty cone.  Our theory was we could scoop the hot fudge sundae into it.  The fudge would slide off, and he got so upset.  I looked at him and smiled, “Hey, Mommy’s got a great idea!”  Off we went to the register again.

Round three was not much better.  I ordered him his usual.  He can normally eat a cone really well.  However, with his feeling so utterly defeated, Braden simply waved his white flag and systematically shattered the hearts of all the adults.  He threw his arms up to me, and I scooped him up.  There he sat, so very sad, with his arms around my neck and head on my shoulder.  My baby boy.  I wanted to scream at the injustice.  It’s an ice cream sundae.  How can an ice cream sundae have the power to ruin my child’s day?  It doesn’t, but his body does.  It failed him today, and his mind knew it.  That’s what crushes me.

We all rode back to the house in relative quiet.  Something had to be done to disconnect from that experience.  None of us would allow the experience to ruin our entire day.  We learned that it’s ice cream cone or bust in our world. 

Upon arriving at my parents’ house, I had an idea.  I know that my parents’ bed is off-limits.  It always is made, the comforter always looking pristine.  He he.  I climbed on the bed, a no-no, and snagged Braden as he left my parents’ bathroom.  He giggled wildly, knowing we were doing something against the rules.  We laughed hysterically as my mom feigned anger.  It was then the unexpected happened.  My parents ganged up on Braden and me!  They started tickling both of us!  I can honestly say that I didn’t see that one coming!  I had an idea they would tickle Braden, but my feet surely didn’t expect it!  We laughed until our sides nearly split, our cheeks hurt, and until our hearts no longer ached.  It was perfect.

I can always count on my parents to help make things better, and today was no exception.  My dad ate soup with Braden at lunch today. I have Braden drink soup directly from the bowl, and tell him, “It’s just like they do it in Japan!”  So, now we all eat soup Japanese style.  We are making this lifestyle work for us in our own quirky way, and that is almost a gift in itself.  I just wish we didn’t have to.

Look out Baltimore! Here we come!

June 1st we head to Johns Hopkins Children’s Center.  I’m not sure Baltimore is prepared for our circus to come to town, but ready or not, here we come!  We’re hoping to sandwich the icky things with some good.  Thanks to some friends who live around there, we are certain we will have more smiles than tears.  Ok, now don’t get me wrong, there will probably be more tears than we would like, but we are hoping that we can keep our brave faces on and enjoy ourselves some too.

We go with the hope that these folks will provide us with some answers, but at least some direction.  Rumor has it they are more than helpful!  (wink, wink)

In the past two days we’ve connected with some people who appear to be quite amazing.  They are further along in their A-T journey, and we hope to not only gain some knowledge from them but also friendship.  Between old friends and new, we’re keeping our chin up over here.

Today we had a great day.  We went and played with some friends at a local indoor playground of sorts.  We swayed to live children’s songs being played on the guitar, slid down slides, and had plenty of smiles.  Can one really ask for a better day?