Month: December 2017

The One Thing I Would Do Differently 

I think a lot of us go through some major denial throughout the process of our child being diagnosed with a condition we never saw coming. Through the beginning of the process, after we got past some of the scarier possible diagnoses (like Neuroblastoma), I think my husband and I convinced ourselves that our son’s genetic deletion diagnosis wouldn’t end up meaning much in the long run and that he would just “catch up”.

Well, he is three-and-a-half years old now, and the reality of our situation has set in. I remember the suggestion of applying for Medicaid was thrown around early in the process, and given that my husband’s insurance plan at the time was really decent we didn’t think we’d really need it,  because I think in the back of our minds at thought we be moving past this stage soon enough. The more people I chatted with about Medicaid and the different Waivers that Colorado offers to help cover certain things, I felt maybe it would be worth looking into, but the process and differences between all of the different options also seemed very foreign, confusing, and intimidating. And this is coming from someone who is fairly well educated and used to being able to navigate my way through life.

So when our son was hospitalized for RSV in January 2017, I took the waiver paperwork with me and got started, with the goal of finishing it before he was released at the forefront of my mind. Things like the idea of respite hours sounded downright magical, but everyone I talked to who was more knowledgeable on the subject let me know that in order to be approved for the CES waiver you would have to prove many things, including the your child’s need to have interventions throughout the night. That sounded really serious to me, and at the time I wasn’t sure what we were doing would qualify. Further information and explanations later led me to believe that we would indeed qualify. But I let the doubt get to me during that hospital stay, and I took the paperwork home with us, only half filled out. That pile of papers (which later came to include the disability and Medicaid applications) continued to sit, and continued to weigh heavily on my mind. I don’t know why I let it intimidate me so much, but I did. Even grad school didn’t have this affect on me!

Finally, at the beginning of December 2017, I turned the entire pile of filled out papers complete with documentation in to the correct office (DDRC)! When I followed up a couple of weeks later and found out they had “misplaced” said pile of paperwork, I about lost my mind. But they found it, and that is another story for another day.

Long story short, though, is if you think you may need any of those services, waivers, Medicaid, etc. DO NOT WAIT! Make yourself fill out the papers, and let the powers that be decide if your family qualifies or not. Because I wasted all of this time, I cannot apply to be my son’s CNA yet since that is dependent on Medicaid approval. I am kicking myself for not turning in all the paperwork back in January (or even before that), because now I have only delayed an already long process! So if you’re questioning it, just turn in the paperwork as soon as humanly possible and go from there. That is one big thing I would change about this process so far. 

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“Comparison is the Thief of Joy”

In the years since my son was born, I find myself thinking that whomever quotes Teddy Roosevelt by stating that “Comparison is the Thief of Joy” must not have much going wrong in their lives, or something so heavy going on in their lives that it is always at the forefront of their mind and emotions. I get where people are coming from when they quote this, and the quote itself certainly does make sense. If you want to drive yourself crazy, compare yourself and your situation to others.

But then the other day,  a friend added me to a special needs specific Facebook support group, for parents of children with special needs. Upon visiting the page for the first time, I could immediately relate to a post by a mom who just needed to vent about her hard day and consequent big emotions. In a nutshell, she was recounting an experience from earlier in her day where she had been somewhere with her child who has significant special needs and is quite delayed, and she mentioned how hard it hit her that day (while watching other children her girl’s age) just how far behind her little one is, and how much it hurts. She also talked about how those feeling come in waves. Some days she is convinced that she has come to terms with it all, and then {BAM!} out of nowhere the feelings will blindside her as she is brought back to her own reality and sees how far behind her daughter is. It hurts a mama’s heart to the very core. I thought, “I’m right there with you, mama. I get it. I go through the same waves of emotion and hurt.” Then I opened up the comments and was flabbergasted to see how many people in this group (who should only be in there if they, too, have a child with special needs) immediately jumped in and told this mom that she should NEVER compare, and quoted the dear former president’s quote. I quickly went from a feeling of solidarity to wondering who the *f* are all these Righteous Ritas who are jumping in and telling this mom to stop feeling how she feels when she sees other kids her daughter’s age who are so much more advanced?! Maybe they have all reached some point of zen in the progression of what it means to be a special needs parent that I just haven’t reached yet, so I just don’t understand?? I will freely admit that I feel how that mama feels almost every time we go someplace that has children around my son’s age, and I have to watch as they walk, talk, feed themselves, interact with other children, show that they understand when their parents talk to them, etc, etc, etc. I don’t think parents of typical children will EVER know how much these simple interactions hurt my heart, but I would expect a FB room full of SN parents to “get it” and be a little more empathetic! I guess this is why some people say you should stay off of social media, too? Another thing that seems much easier said than done!

 

(Feature photo from Reddit.com.)

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All I Want for Christmas

As I’ve been pondering this holiday season and what it all really means, I hear some of the old time favorites recited, like “All I Want for Christmas is My Two Front Teeth” or “I’m Dreaming of a White Christmas”, and I think about what it all means to me. Christmas was never a big deal in my family when I was growing up, and many of the traditions, hopes, and beliefs associated with this time of year are sometimes lost on me. I started thinking about what would be the one big wish I’d like to see come true for Christmas, and that would be to see my almost three-and-a-half year old son walk on his own for the first time.

I understand that most parents don’t have to hope or wish for something like this to come true for their child(ren); it just happens, and usually around the time that it typically happens for most children. But when you have a child with numerous health concerns and delays, EVERYTHING moves to the category of stuff you just don’t take for granted. I see mothers of typical children commenting their woes online around this time of year about how their precious little baby just wouldn’t cooperate when it came time to sit on Santa’s lap, sometimes even accompanying their comment is a sobbing emoji, and I can’t help but think, “REALLY?! This is what parents of typical kids get worked up about??” I try to imagine what it would be like if these things that seem so trivial to our family were really our main concerns about our son, instead of his inability to walk, talk, or feed himself at this point of his life. I can’t help but have feelings of anger and bitterness well up inside when I think about it all too much. Your point of view and the way you expect things to go certainly have to change when you are faced with raising a non-neurotypical child, and oh how it hurts sometimes!

 

(Featured image from Indyschild.com.)

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