Battles against terminal illness, anxiety, and life!

Archive for the ‘A-T’ Category

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.

Health News Update

Thank you Cait for your sweet email last night! I would be happy to give everybody an update on Braden’s health. Since this is more nuts and bolts, I hope you don’t mind the bullet point style type update. While my emotions are more free-flowing, I “handle” the medical situations in a more tactical type manner. That’s just my self-preservation kicking in!

  • Pulmonology: In short, it’s an issue. What used to just be a coughing until we vomited situation has now become a mucous plug problem. Braden’s lungs produce mucous like a Cystic Fibrosis patient. He attempts to cough but his lungs aren’t as strong as a typical child. The mucous gets stuck in his esophagus that is too soft (tracheomalacia.) So, the mucous creates a plug making it hard for Braden to breathe. We are working on this situation. While there is no medication that can assist him that we are aware of, we are looking into  cough assist and percussion vests. This will be in addition to his inhaler, hand held percussor, nebulizer, and suction machine.
  • Immunology: We have been in a sinus/ear infection cycle. Due to his IgA deficiency, Braden has excessive nasal drainage. The stagnant nature of it causes it to fester in a manner of speaking and it becomes infected. We are hoping that this last round of antibiotics does the trick for at least a few weeks!
  • Gastro: We are continuing to deal with our normal bag of tricks in this realm. We have noticed a slight tick up in the amount of fecal incontinence issues here.
  • Orthopedic: Braden’s feet are turning inward a bit more than they have in the past. We continue to stretch his legs. No medical intervention or devices are needed for this at this point.
  • Mobility: We continue to fatigue more rapidly than before as expected. Braden uses a chair for distances but is ambulatory during play and for short distances. We have shown an increase need for assistance with smaller tasks.
  • Neurology: We have noticed a slightly longer delay in responding to questions. This is due to the deterioration of his cerebellum. We continue to have the same difficulties with tremors and such.
  • Cardiology: Knock on wood. Still all good here!
  • Nutrition: We have not gained weight in a year and a half. This is largely due to the extra movements. Children with A-T move continuously to counterbalance their ataxia. This burns calories. It also takes more effort for our children to eat burning more calories. So we stuff as many calories into him as we can. There is always a green light to feed him those foods in which most parents would say no.  At some point we will be “forced” into considering a feeding tube to get that critical nutrition.

In short, how sick is Braden? It’s hard to say. The breathing issue is our biggest area of concern. It takes diligence. We have to pay attention. One ear must always be trained to listen. We do our best to simply live as normally as we can. We have days where everything is just fine and then “boom” we have a breathing situation and those moments are very critical. Then there are those days where you would swear something could easily go wrong and everything is just fine. So, you just never know. There are a few things that lead to death in our sweet children: lung failure, infection, and cancer. Despite the writing on the wall, we are doing all we can to focus on the LIVING and LOVING life. It isn’t uncommon for Braden to not be able to breathe, cough, vomit, and look like hell, and then just minutes  later be a giggle machine. May that never change!

Please hug the people you love and tell them so! Life is a gift and not a given.

Hugs,

Becky

Aware

Slowly I removed one piece of clothing at a time. First my sweater hit the floor, undershirt, and then pants. They lay there just like myself a crumpled mess needing to be picked back up. I paced over to the tub and let the flow of hot water loose. I dipped one foot in and the next, slowly lowered myself into the water that was a warm hug. Sometimes you just have to strip down to nothing to let the walls fall down.

“Mommy,” his little voice queried. “Yeah Bug?” I inquire as I hold him facing me, his long legs wrapped as tightly as his arms around me. “Why do I have to have A-T?” Thank goodness for rehearsed answers, for I am certain an Oscar is in my future. The questions each like a dagger, “Why do I have A-T? Why doesn’t E have it?” Declarations of injustice followed. “That’s not fair! I don’t want A-T!” Involuntarily tears slid down my cheeks on to his soft curly hair. His innocence is slipping away and awareness is creeping in. Nothing can prepare you for this. Nothing satisfies his need to know why. He is but five years old and discussing genetics and DNA is far out of his understanding. So I pulled him tight, did the best I could, and wished with all I have for a better answer next time.

Thankfully onions needed chopping for dinner and gave credence to my tears. Ten minutes later my husband comes home knowing from my text that I need some moments. So, here I sit in this hot water wishing that I could heal my baby, to soothe his soul, and that I could make everything all better for all of us. I have too much to do to allow such hurt to consume me, but for this stolen half hour I shall let it.

*This was not proofread or spell checked. I have a wounded boy to tend to. Now to pick myself and my clothes back up.

Coping

If there is one thing about A-T that you have to learn, it’s how to function while living with it and its challenges. The challenges that our children face are enormous, but those challenges aren’t self-contained to the child who has the condition. The siblings must learn to cope with having their parents unavailable as they have no choice but to help their son or daughter who cannot do for themselves. We do our absolute best to make sure that our daughters understand this, and we make sure to spend special time with them. Then there are the parents who have a continual brave face and must be ready to spring into action like a superhero to the rescue. While I have yet to master leaping over small mountains or scaling buildings, I am rather adept at the scoop and spill. That would be the “He’s going to blow!” manuever when Braden is about to vomit on everything in sight. Then there is the mental coping. How do you learn to cope with something that is “faceless” that is attacking your child?

Oh, you think I have the answer? Now that’s funny! I have no answers because it is different for all of us. This morning Braden vomited all over the bed. I swept him off to the living room while my husband started changing sheets. I redressed him while he put those sheets in the laundry. I cleaned his face while he got him a drink. It’s a team effort in this house. Then he started breathing rapidly. I asked Braden if he could breathe and he shook his head no. I got the inhaler while Justin grabbed the spacer. As I was administering the medication he got the pulse oximeter. It was a seamless dance we did this morning. Like a ballroom dancer executing a waltz, each of us moving in perfect rhythm. Just like that dancer, we weren’t born knowing how to dance this way. Rather, we have had to learn. We have gotten the steps, we have learned the routine, but we both know that soon we will find ourselves attempting to Foxtrot. That would mean learning a new dance and routine. The difference is we now have basic dance moves down. It’s slightly easier to adjust when you know some of the basics. It’s something that is learned. To my sweet new friend with a son who is just two and has learned her precious son has A-T, give it time. You will find a new way of doing things. You will get frustrated, angry, so very sad, but you will also find your rhythm. You will find beauty and grace. It will just take time. They say time heals wounds. I say that while wounds may heal over time, the scars of A-T shall forever be written on our souls.

Every Day is Different

This morning I gently woke Braden up as I do every single school morning. I turned on the side lamp and started disrobing him. So, perhaps the gentle bit was an exaggeration. Regardless of how I wake him up, the point is I am waking him up. That is never a pretty scenario. So, better to just get on with it. His pull up, due to urinary incontinence, is removed and changed. I slug on his pants, pull on his shirt, and put his socks on him. In many ways this is no different from any other parent. Today though it hit me, this is a forever routine.  Gone are the days that I dress his younger three-year old sister, but here I am still dressing him at five years old. Sure, if I give him about thirty minutes he can dress himself but by the end he is absolutely exhausted. That’s how A-T hits you, little punches here and there. While they don’t bring you to your knees, they do affect you. It’s as if the color gray was added to the rainbow. While it would still retain its beauty, the balance is completely thrown and just feels off. Today felt that way to me. It was a beautiful day but tinted with a bit of sadness.

Tomorrow we have a follow-up appointment from Braden’s scoping procedure. I am hoping to give you the run down then. For now, I want to go snuggle up next to my curly-headed little man. I am going to sneak in there, cuddle up next to him, smell his hair because that’s what sane moms do, and give him a much-needed kiss good night.

 

Transitional

When your child is an infant and they learn to take their very first steps, you are consumed with overwhelming excitement. It’s amazing to watch them learn and grow into such adorable little wobblers! There arms pull up and out to help balance their still shaky steps. You wildly snap photographs that will forever be cherished. Another amazing milestone is accomplished and as a parent we couldn’t be any more proud! However, even with this new-found independence, they are still heavily reliant upon their parents to tend to their needs. You still briskly push them in their comfy stroller as they absorb the world around them. It is full of such hope and promise.

Now imagine never leaving that place. Your child has outgrown the stroller, yet still they wobble and pull their arms up. They are still so intelligent and you full of pride. You still wildly snap pictures and cherish milestones. Only now you wish the entire world could see your child through your eyes. The visions of a parent with a child who has special needs. You wish they could only be there to hear that witty comment, that precious moment, and that excruciating medical appointment. Those arms pulled up are no longer for balance but due to fatigue and deteriorating muscle. Their intelligence is masked by a face that doesn’t readily show their emotions and by the bias of the public of the mobility devices that helps gain them a smidgen of independence. Their milestones are no longer in stride with their peers but on their own time frame. You simply become your own little world.

Our little world is in a state of transition. Strangers now take notice of our five-year old riding in what appears to be just a stroller. The strange look of passer byes doesn’t go unnoticed. We look like indulgent parents with a lazy child. Oh how I wish I could just sit down with them over a nice warm cup of coffee and just talk. Listen to their challenges and share our own. Remind them how easy it is to make snap judgements and how critical it is to try to keep an open mind. There will always be people who will never be able to see past the surface, but if only we could reach out to those that can. If they only knew just how hard both our child and we work to keep everything in order, to make it through each and every day, to make complex medical decisions, to make your child’s educational experience the best it can be. If they could only feel how heart wrenching it is to soothe a child who is having the eleventh tube of blood taken, to carry their sedated child to an MRI machine, to cart them to the doctor yet again, to go through two boxes of tissues a week for months on end, to worry if this infection could turn lethal, to know that you will have to make end of life decisions for your child, to know that your child will not be fulfilling all of those dreams you thought about as you rocked them to sleep as a newborn. Just how do you cope with all of that?

You see my child’s world is still full of hope and promise! He is still soaking up the world around him. I just still have to tend to all of his needs. He will always need my help using the restroom, to shower, to prepare his meals, and to eat. He will not be afforded the same level of independence as his peers, but that by no means will diminish the meaningfulness of his life, the vibrance of his soul, and his need for love and acceptance. We cope every single day differently. There is no magical formula on how to raise a child with a terminal condition. There is not a single day that goes by that we don’t notice our son’s extra needs. They change from day-to-day, and we have to be cognizant of his ataxia, tremors, fevers, food intake, and numerous medications. However, that doesn’t mean that every day it beats us over the head with a hammer. There are days though I wish somebody would, because it can leave you numb, hollow, scared, and so incredibly sad. Those days we just snuggle up real close, take a deep breath, and kiss the top of his curly little head. He is here today. Thank goodness we had one more day. There are days where only tears will do. Then there are others where we are too busy pretending to be snakes, frogs, and kangaroos to worry that we may not be able to do this sometime soon.

Grab ahold of what is good about every day. I will never ask of anybody to not complain about the small things. Just this morning I lamented the fact that I didn’t get that second cup of coffee that I really wanted because while I was busy dealing with a mountain of laundry, the coffee pot turned off. Alas it was cold and I never managed to reheat it. Life is just messy in that way. Just remember what truly matters, give others a bit of grace, take the moral high ground, be the first to offer assistance, be courteous of others, and to be thankful for another day. Oh, and if you are given the chance, smile at a child in a wheelchair, hold the door for a mother who is pushing a large stroller, and try to give some space to those who need to park in handicap spots. They are small things that are free and make a big difference in our world!

Turning a Corner

After diagnosis, we could hardly imagine what our future may look like. How could we possibly fathom something that was so enormous? Admittedly, we still have no clue what our future holds but none of us truly do. I know that every day I will look my son in the eyes and tell him how important he is to me and how very loved he is. I know that he will face challenges that most will never even have to consider. What I know most of all now is that I don’t need to see around every corner to know exactly what comes next. I already know the terrain is rough, the mountains high, and the journey breathtaking. In essence, I have turned a corner.

Five seems to be a really tough age for Braden, as it is for most children with A-T. So, we know that we just have to think outside of the box and be prepared for a new form of endurance training. Instead of mourning all that he cannot do, which was a very necessary part of grieving, we now get to focus on how we can make things happen. With every challenge that we face, we must find that spirit, that drive to give our best to our children, and use it to its fullest potential. My child may be different and do things in a different way, but he is just like every other child his age. He has dreams! He has goals! He craves attention, respect, and love! As his mother, I want to help achieve all that he can. Sure, he may have to do things differently, but there in lies the challenge.

We are now ready to embark on the grand adventure of kindergarten! My sweet boy is off to elementary school. While many parents may be saddened by such a milestone, I am ready. I am ready for him to be challenged, to learn, to explore, to create, and to hopefully make friends. While I may not be there by his side to help him day in and day out, it is good for him to know that there are other people he can depend upon. I will be here making sure he has all the tools a child may need to be his best. Sure this means extra physical therapy, calls into the immunologist, emails to the neurologist, and continual communication with all on Team Winks, but we will do this together. Together we are stronger, and to be honest we need all the strength, love, and support we can get!