Medically Fragile Child In This Home~

Boy I wish I would have had this sign back in the day. It would have made life so much easier, especially when having company. It was always so difficult turning people away or asking them to cut their visit short if they were ill. Having to turn people away from visits was always heart breaking. It was even worse when we had too cancel plans because on of their kids became ill, or the parent was suspecting an illness. Most winters were like this, flu season was always the worse. It made it challenging sometimes to explain to people that even though your child only has a runny nose and dry cough, it could potentially become fatal for Braden. Trying to keep Kailey healthy during flu season was hard as well. Sometimes play dates were cancelled for her too, we couldn't let her bring something home to Braden.

So this is something that has effected our family from the very beginning. It still does change the way we live our lives even today. I have found at times some people in our lives have not understood this. I use to get asked all the time.."Why can't you come on Saturday?" "Why can't you stay longer?" We'd love to have you stay until after dinner. Why are you rushing out so soon?

It use to drive me f***in crazy. I not only hated the fact that we couldn't live a normal life like you were, I absolutely detested the fact that now I had to explain to you over and over again WHY we can't come to your function. It was like rubbing salt in an open wound. If any of you are out there and you have a friend or family member with a medically fragile child, don't ask a 100 questions of why they declined your invitation. How about you educate yourself on the condition of your friend or family members child's situation.

Do them a favor and instead of making them feel terrible for not being able to make you happy, how about after your dinner party you run over to their house with a care package and some dessert, maybe even some wine. Cause let me explain something too you. There is nothing normal happening in their house. All of the things you can enjoy and maybe even take for granted is something they can only dream about. The thought of being able to invite friends over to their house, make dinner and share a bottle of wine with a great friends or family is something they only wish to do. I can guarantee you, any family with a medically fragile child is only dreaming of sitting around your table, carefree sharing in your company, stories, drinks, games and entertainment.

No parent of an ill child is ever able sit without worry around your dinner table, their mind is sadly not on you or your dinner. Their mind would be on their child, worried and watching the clock anticipating the time they are leaving to go home.

 

Even though I say that, and can totally relate to this situation it doesn't mean we don't want to go out and get our minds off of the things we are dealing with at home.

There is nothing you can do to change their worries, just be patient and understand their needs. Parents of medically fragile children will be the most honest down to earth people you will ever have in your life. They don't have time for drama or ridiculous demands, they need nothing more than a soft place to land. A place of acceptance, light carefree expectations. Simplicity~

Getting back to photo and the list of rules placed in our homes, this is something I so wish I had back when Braden was younger.

One of the hardest parts of my life, back in the day was having to decline invitations or cancel plans with friends and family. It was always one of the most difficult thing to do. Especially when there were kids involved. We were lucky enough that honestly through the years we had a busy enough house. We always had play dates, lunch dates, crafts, games and movies at our home. Not to mention the swimming parties and birthday parties. Our children did not suffer from lack of friendships and good times.

What my children suffered from was the cancellation of all those things. I will forever be thankful that my friends took this situation very seriously. There were times when we had plans for a day with friends, and sadly if one of their kids came down with a cough or even a sniffle we would get the call and I would have to make a decision about whether or not we could take a chance of Braden getting sick.

The problem for Braden was simply due to the fact that something as simple as a common cold could turn into full on pneumonia for him. He doesn't have very good reserve in his lungs because he lacks in muscle strength in his core.  You and I use a whole bunch of muscles when we breath, he only has his accessory muscles. The ones in his upper trunk, he has to use his shoulders to raise his ribs in order to sustain large enough air entry into his lungs.

If by chance he did get sick, it most definitely always ended up in his chest. He doesn't have the strength to cough and clear out his lungs. This always posed a life threatening issue for him, pneumonia or RSV could become fatally dangerous. It was so scary.

My friends knew this, and always backed out when one of their kids showed sign of illness. Even if they were at another friends house the day before, and that friend had a cough or illness we would still have to cancel our play date.

Many tears shed because of cancellations. Not just my kids, but me too. I needed the interaction just as much as they did. Most times I was looking forward to having an afternoon with a girlfriend while our kids played.

We also struggled with family functions through the years. I can't remember how much we shared with Paul's family. We tried to do our best to explain situations to them, but many times we would be so upset we would shut down and shut people out. It was never personal, it was just too stressful at times for us to elaborate. I guess if things were to be different and we knew then what we know today we would have had a spokes person for our Martz family. Someone who we could rely information too, and then have that person pass on the information.

We did spend many years walking out early at functions, and I know some don't fully understand why.

In the very beginning we made a pact, Paul and I did. If we all couldn't go to a family gathering then none of us did. We were family, and the most important people in our lives were under our roof. Many times I would tell Paul to go, if Braden was sick and we couldn't attend an Easter dinner or birthday party. Most times he refused, I do understand why he did but I always felt so bad that we couldn't make it. You have to remember that most times we were up every two hours through the night banging on Braden's chest and doing Ventolin treatments so that we could clear his lungs free of the mucus. Otherwise pneumonia would set in, and off to the hospital we would go. Usually resulting in life support and intubations. THIS would be worse case scenario. Every intubation and chest trauma would be a life or death situation, and I truly believe people couldn't comprehend that.

I admire our dedication to our family, although I would want Paul to go to his families dinner he wouldn't dream of walking out on us. We were a team and we got through things together.

I only wish today, I would have had the tools back then to express our feelings and share what life was like behind closed doors. We were young, scared and just trying to survive. We didn't have a lot of time to think about how our decisions may have been effecting others. At the time I cared, I worried constantly about how others felt about us not being there. I added so much stress to my own life, ridiculous~

Deep down the most important things in my life were planted securely in the walls that housed our home.

We are in a different place today, we still need to careful of those who are sick. We do not let people come to our home who are ill, or have been with someone who was ill. We avoid hospitals, public places or any other form of spreadable diseases.

Its not uncommon still today for us too have to cancel plans because Braden isn't well, and the same goes for Braden.  He relies on good health more than anyone I know. He has too monitor his nurses, friends and family and make sure no one is ill when they come into our home. It can get depressing, frustrating and difficult.

This is where you can come in, this is exactly what I wish I would have done differently. I wish I would have educated those In our lives how they could help us out during times of illness. Or when we had to cancel plans due too the threat of contamination.

I can only imagine your devastation when we would cancel or leave early from a function...but can you not see our disappointment. Sometimes we were judged, I did feel like sometimes you were annoyed. Could you not understand how hard it was for us? Our children missing out on time spent with family and friends. Having to leave before the candles are blown on a birthday cake, walking out on a board game, missing out on the coffee and dessert because we couldn't risk Braden's life with the cough coming from one of your kids.

I know there are some of you out there who are living this right now, so I am going to leave you some advice. Whether you are a parent or family member of  even a friend of medically fragile child, here is some help so you can understand, relate and support your loved ones.

 

One thing most of us with medically fragile children hates is asking for help, we don't want to put anyone out. If you were to take initiative and pick one thing to do for your family member or friend, it would make a world of difference. Something as simple as asking for a grocery list, stop by pick up their debit card, shopping list and go do their shopping. For me, this would have been so very helpful. There was nothing worse than spending a day at the doctors, then hospital for chest xrays, treatments, physio, picking up Kailey from school and not having anything in the house for dinner. I suppose maybe if today there are services that you can reach out too for groceries. I system where they do your shopping and drop it off at your home. Or if you know your friend is spending the day with a sick a child, and you know they are exhausted from the night care drop off a casserole. You don't need to stay for a visit, you are busy in your own life and 99% of the time you friend won't want  you too stay anyways. Its nothing personal, its just any time they get to themselves its usually needed to Energize and regroup.

Many families dealing with chronically ill children are running on nothing less than short fumes. Some days I didn't know where to start, my days would be so chaotic. I remember in winter months when Paul would have to go to work early mornings, and we would have had a heavy snowfall. Before leaving for work he would clear the driveway, and brush off my van trying to make my day somewhat easier for me. Lets take a glimpse of how things usually went:

Typically we would be up every 2-4 hours doing chest physio, postural drainage, Ventolin treatments through the night. Waking him to breath deep and cough so we could clear his lungs. Mornings would roll around, I would have a tea, do another medical treatment, wake Kailey, make breakfast, tend to Braden's morning routine, get myself dressed, assist Kailey with anything she needs, make sure her lunch was ready, and then check outside. Most times we'd have another snow squall pass through which then left another load of snow nicely covering my driveway and path for Braden's wheelchair. Not to mention the inches that were now blanketing my van that I had to find the strength to clear away. You may wonder why I had to get Braden out of bed in the mornings if he is sick, but usually he would have a doctor appt. just to check his lungs to make sure there was no collapse.

I can't even begin to explain what someone coming to shovel my driveway would have done for my life at those moments.

 

I did have a couple mornings where I walked out and someone had come over and shovelled. I'm not sure who it was, and most times we were so busy there wasn't time to find out so we could say thank you. If you are living in an area and there is a family with a child who is medically fragile, special needs or physically handicapped, for you to take away a chore like shovelling a driveway, clearing a path for a wheelchair or mowing a lawn for a very fatigued parent, you will be answering a prayer.

 

 

This goes for family members and friends as well, reach out to them. We all know you are busy as well, you have your own things going on in life but truly what is one driveway clearing a year going to do? For them it could be the only thing in their day that they can be thankful for. Take initiative, help out.

On the topic of helping out, I suppose we could turn our attention to the "healthy" child. One mistake we made which I wish I would have realized back in the day was how much Kailey missed out when we couldn't go to family functions or friends get together's. If Braden was sick then honestly there would be no reason why Kailey had to miss time with family. The only reason why Kailey would have to miss any function would be the same reason we would, if someone was ill or showing signs of illness. Truly, I should have had someone from the Martz family appointed as the one person who would be responsible for Kailey's purpose to go be with her family. It could have been one person, the same person from her early years who she could become close too and be comfortable going with them. We didn't do that, and my advice if you are reading this and find yourself in this situation with extended family, speak to someone and ask for their help.

Or maybe if you are a family member missing your medically fragile family member, take them over some food from the family gathering. Wrap up some left overs and bring it over, complete with dessert. Everyone loves free food, and most times parents of ill children are so busy they forget to eat.

Don't be shy, make a meal order a pizza or drop off gift certificates to favorite restaurants that offer take out options. When a family is dealing with as much stress as we did, a delivered pizza may be the only saving grace they've seen all day.

One very important piece of advice my friends is to do your own research. We have the internet in todays world and although I don't want to encourage you too search the internet for all things concerned. It is a good resource for you too read into diagnosis, treatments and care plans. If you have someone in your live who you know is struggling with a medically fragile child then learn about their condition and ask questions if you are unclear. Your loved one would be so impressed and appreciative of your time and attention. Showing an interest in their life situation would mean so much to them.

It shows them that you care, and sometimes when you are at a family gathering or party it sure is nice to not have to sit around answering a bunch of questions about your child over and over again. If you are a family who happens to have a medically fragile child in your life, take the time to learn about it. Then share the information with the rest of the family, so everyone is aware of what is going on. Then there is no reason to burden the child's family with over whelming questions and concerns. When they are able to come around, you can enjoy them. The illness they are dealing with does not define them, they are much more than a medical condition. If you listen closely you will begin to hear and see all the wonderful things they have to offer to you~

 

I can not express more clearly if you are blessed enough to have a family in your life with a special needs child then learn from them. They will teach you so much about life, unconditional love, dedication, faith and the true meaning of happiness.

 

 

I wish I would have thought of this sign below when I needed it most. How things could have been different. Hospitals should provide these signs to parents when discharging medically fragile children.

Well my lovelies, I hope I have left you with a well rounded explanation of the ups and downs of entertaining the family of a "medically fragile" child. Honestly I can't complain, I was lucky enough to have friends who completely understood this complication in our life. They never once risked Braden's health and always took our advice seriously,. If you are reading this and can relate, I hope you find some good advice. Learn from my mistakes, and make the appropriate changes for a long lasting, caring relationship with those in your life.

Until tomorrow my friends good night and god bless~xo