Tonight was a really cool night for Zion. My sister had spoken to the coach of Greencastle High School's football team and he invited Zion to come to the game to walk out with the team, and watch the game from the track beside the field. Zion thought it was so cool, and the coach was really great with Zion. He kept telling him the team "needed his help to win," which really made Zion feel special and brought tears to my eyes. It was just a cool thing for Z to get to do, and it is something he won't soon forget.
On a different note, as usual the night could not go without an event that inevitably detracts from enjoying Zion's happiness generated from the love and generosity of others. No matter how hard Chelsea and I try to keep others insensitive behavior from bothering us, sometimes you can't help but get irritated at others ignorance and sheer stupidity. We have come to expect that from strangers, however from family I feel it is completely unacceptable. I don't want to be a rag, especially on something like a blog where the other party cannot defend themselves, but seeing as how it is my right of free speech, who cares.
Right before halftime the announcer at the game (Mr. Van, you rock as always) devoted about a minute to letting everyone know about the upcoming 5k Walk/Run that my family is organizing to help us pay for costs of equipping our van for Zion's wheelchair. During this time a member of my family was in the stands shaking their head in disgust. This is not the first time that similar things have been done or said in regards to people who truly love Zion generously helping Chelsea and I provide him with the resources we cannot afford to provide him on our own. How dare you.
I feel that I need to take a second to explain just what all has been done for Zion through the love and compassion of my friends and family through our battle with SMA. We have been either given the specific item, or the funds to purchase the items on this list by the donations to the FIGHT FOR ZION Fund.
A Dynamic Stander
2 Manual Wheelchairs
A K450 Permobile Power Wheelchair
A Stationary Stander
A Van
A Captains Bed
As well as help with paying for numerous trips to doctors appointments, hospital stays, and past medical bills.
For all those who have helped us, thank you. I cannot explain with words the many emotions we feel dealing with the difficult realization that Zion has SMA. I find comfort knowing that Zion has been given assistance to succeed in numerous opportunties he otherwise wouldn't have had if it weren't for the love you have shown us. Dealing with a child who has any sickness is extremely difficult, and it is because of my personal knowledge of this struggle, that my heart goes out to all those parents and children who are in similar situations, those who fair better than Zion and those who fair worse. It should be a struggle that we all collectively find strength in each others testimony and support and love.
I hear quite a bit from people that they are proud of me and Chelsea for doing such a good job at handling our emotions with this devastating situation with Zion. I hear people say that they wouldn't be able to handle such a situation, and that we gain a lot of respect for taking such good care of Zion. I feel that this is true about 80% of the time, and the 20% are the times that people don't get to see. These are the nights with the tear soaked pillows, the moments when we must leave the room to hide our tears from Z, the crying in the shower, the screaming at God in anger questioning why this has to be this way. I would give my life to cure Zion. And I find a small amount of comfort knowing that there are so many people who would do the same. I also find a sick feeling in my stomach knowing that someone who should be cherishing Zion and supporting us is shaking his head in public when they announce his walk as if we are boosting our bank accounts at others generosity. If I saw it, then so did others who know that this person is a member of my family. Its embarrasing. Its sad. I wish so bad that SMA was something that had a treatment. The sad reality is that they can treat the symptoms using techniques used to treat other diseases, but there is literally no treatment for SMA or its progression. The even darker reality is that SMA kills children every single day, and without a cure or a miracle from God, it will kill Zion too. Explain how that is fair. How does God allow that to happen? Why Zion? I know that my Heavenly Father loves Zion more than I do, and He has given me peace about this, and as bad as it hurts me to even write about SMA, I know Zion is ok. I pray daily that God would give us a cure. I pray daily that God would just give us a treatment to stop the progression. I pray that God would let me see my son take his first steps. These dreams becoming reality is my hope. And the fact that someone so close to us and Zion would know these facts about him...seeing us lug his wheelchair down two narrow ramps...and they shake their head at an effort to raise the money to help us effectively transport his wheelchair...how dare you.
Here is another perspective. Zion is small now, and already his equipment is too much for Chelsea to load in and out of the van by herself with Zion and Zoe. What happens when he is ten? Fifteen? My family relies on a single income to provide for all our bills plus all the other expenses related to Zion's care. This is a never ending battle, purchasing new equipment as he grows and progresses...all to accomodate what most kids do naturally on their own. As a father and a man it kills me to not be able to provide all the equipment for Zion on my own. You think I enjoy asking for help? You see our struggle yet you shake your head? How dare you.
This is a battle that no one should have to fight, and when people see Zion their compassion to help restores my faith in mankind. I started this post with two purposes. One was to thank those who help, and to show a little bit into what all your compassion towards my family and I has allowed us to provide for Zion. Without this help Zion would not have many opportunities most people take for granted, and it brings us joy to see Zion gain independence through your love. Thank you. The second goal was to open the skeptics eyes to the reality of what we deal with. I assure you, I would love nothing more than to have the ability to take SMA away from this world. I would love to make SMA a thing of the past, or even a condition that a child undergoes treatment and recovers from to never deal with again. Sadly, I would even love the ability to simply stop the progression in Zion, and have to face the already life changing effects it has had on his body. The harsh reality is that I have never seen my almost three year old son take his first steps on his own...and for the record I will go through any means necessary to give him the next best thing...no matter how many shaking heads I get. So next time, stop shaking your head and think for a second what it would be like if your child was going through what Zion is...something is wrong if you don't feel anything but love and compassion in your heart for Zion.
Sorry for the rant, and I hope it all makes sense. Again, thank you for all you do for us, it is not unappreciated.
Much love,
PH
