I wrote portions of this post nearly nine months ago and, thanks to my sputtering computer at the time, it never saw the light of day on the blog. Whenever I went back to it, I couldn’t condense it down. If anything, I only added more somewhat cathartic ramblings. I considered not publishing it - - I have about ten such posts - - vents that I wrote for myself, considered posting but have never actually hit "publish." But this one, I feel, while disjointed in places and, in many ways, out of date, is relevant as far as emotions go. My hope is that it might offer insight, perspective and, above all, speak to some of my sisters (and brothers) on this journey and reassure them that they are not alone when they feel the weight of the heavier days as they navigate an unexpected path with their child.
The later part of this week has been rather rough.
Gracie went back to school after having missed the last three (plus a part of the fourth) days of school prior to Christmas break due to nursing issues.
She attended Monday and Tuesday with her new nurse (our third nurse since school started August 31st… a whole other issue) and then her nurse called off sick on Wednesday.
By Wednesday afternoon, Gracie was showing signs of an approaching abdominal migraine and, by 11pm, was downright miserable.
It is the worst one she has had in over a year with violent gagging and retching for hours on end.
I literally did not turn off the suction machines for over three hours as I alternated between suctioning her trach and mouth.
She finally fell asleep solidly on Thursday morning around 6:45.
Needless to say, she also missed school Thursday and Friday. (The good - - and rather amazing - - news is, that despite other abdominal migraines and illnesses this year, these are the only two days of school she has missed because of her own health.)
She is still quite miserable and is barely handling enough Pedialyte to stay properly hydrated.
This is her fourth abdominal migraine since school started, but they all hit over non-school days and we were able to avoid this level of misery by holding off feedings and giving her gut a rest.
That’s not working this time and neither are meds.
It’s utterly heartbreaking to watch her feel awful and be so helpless.
Between that (as if it’s not enough) and my decision to continue purging all of her clothes that we’ve kept for so long (not entirely intentional, but that’s another story), the later part of the week has left me
feeling very “un.” I am super happy to pass her clothes down to my niece and a dear family friend who is expecting (Gracie had so much as a baby because people spoiled her rotten and because she wore those baby sizes for a really long time!), but it also left me feeling quite heavy hearted.
I would see something she wore in the NICU or PICU and was instantly transported to those days.
I would come across something she wore when she was three and remember thinking into the future and wondering what that might look like.
She is almost nine now and many things do not look like I imagined or dared to dream for her.
Sorting through everything to pass on, donate and sell took me on quite a journey in my head (and heart) and made me come back to this unpublished post from last spring…
Celebrating Gracie's birthday is, without question, joyful. But, ever since her birth, this time of year is wrought with a dichotomy of emotions. We are so grateful for every single day. The fact that she is here with us is an outright miracle, so marking her eighth year is something spectacular to celebrate.
But along with her birthday comes a bevy of evaluations, progress reports, renewal of services and therapies, IEP season, etc. We are looking at her current goals, seeing how she's progressed, regressed - - or remained "stuck." We are talking about her health, which is less than stellar. We are evaluating and assessing everything regarding my girl and it's just too much at times. Whoever comes to the door or calls, beware... you just don't know if you're going to get the rational mama or the hot-mess mama.
My bet is on hot-mess.
I won't be so bold as to speak for all moms of children with special needs, but I'm fairly certain I'm not alone on this... at the same time I celebrate my amazing daughter's entrance into the world and every piece of who she is, I mourn what will never be. That's not to say I give up on anything with regard to Gracie... that's the furthest from the truth... but there is also reality. It's also not to say that I spend every other minute countering a positive thing that happens with another that won't. But, I am a parent... and I dream big for my child... so as each year passes and certain milestones aren't hit and goals aren't met, the content of those dreams changes... and with that, comes some mourning.
While I have known all year that Gracie was not meeting (or making much progress on) many of her IEP goals, it is still so hard to sit down and discuss it... in black and white... and realize that her desire and capacity for the more academic structured goals is clearly waning. Again, not to say I will ever give up hope, but there comes a time when we have to be honest about the direction she is (or isn't) headed and alter her goals to create a functional and meaningful path for her. This, I assure you, does not come without tears, nor does it come without questions -- questions such as,
"Have I (we) done enough?"
"Have I (we) missed something?"
"Did I (we) push her as hard as she needed to be pushed?"
"Did I (we) push too hard and make her completely disinterested?"
I can go on... and on. Creating goals that are less academic and are more functional feels like a bit of a step-down - - a bit like we are giving up on her potential - - and that is painful. I know in my head and heart that we are in no way giving up... we will still address and try to teach in the more academic direction, and we will be focusing the IEP elsewhere... but that doesn't mean that this isn't an incredibly painful turn in the path we are carving out with Gracie.
When she was born, I immediately packed away all the traditional parenting books, as there just wasn't any point in reading them. We knew milestones wouldn't be met on a typical timeline and that was okay. We had entered another world... Gracie's world (which, of course, included the world of CHARGE Syndrome and, later Cerebral Palsy, albeit mild)... and in her world,accomplishments were the goal, not the timing of them. We learned to celebrate even the smallest of victories because they were a victory. We learned as much as we could about CHARGE Syndrome so as to be informed, but we were also careful to not let that define her or any of her team's view of what she was or wasn't capable of. That being said, we were keenly aware of the "typical milestone" ages for children with CHARGE. For instance... walking. That is a big one.
"Why doesn't she walk, yet?" is commonly asked, even amongst those "in the know" in the world of CHARGE. I have fielded a bevy of questions on this subject, especially of late.
Doctors asking, parents of other kids with various special needs, parents of kids with CHARGE... "Isn't she in therapy?" I can go into the details of her therapy regimen - - it is intensive, both in session and at home - - but the point of all this is that these inquiries (which are sometimes judgments) only remind me that all of her hard work (and ours) has yet to yield the desired result. There are numerous explanations for her delay in this area... she has no semi-circular canals, her vestibular nerve has not been visualized in a CT and is believed to be malformed or missing entirely. She has scoliosis that has affected her hip alignment and her leg lengths. She has mild diplegic cerebral palsy. Her hospitalizations and chronic illnesses have created roadblocks to maintaining strength and stamina. And, still, after all these years, I will not give up... but I also won't pretend that at moments I feel sad, frustrated, deflated and defeated.
But then, I look at my child. She is neither sad, deflated nor defeated... she, whenever she feels well, is happy and determined. She works when she can, rallies when she has the will and fights the good fight. And, therefore, so do I. What other choice do I have? My daughter lives and breathes the exact opposite of defeat. And, though I am her mother and it's my job to teach her and guide her, she teaches me. So... I persevere. I remove the heavy feelings from my shoulders and heart and move on.
When Gracie was an infant, I attended a friend's baby shower and it was all I could do to grin and try to enjoy it. (Quite frankly, I had a hard time enjoying baby showers for a really long time). Not that I wasn't happy for my friends, of course I was. But I couldn't stop myself from thinking about our couple’s shower where John and I were surrounded by family and friends, opening a generous bounty of gifts, blissfully unaware that what we were envisioning for our life and our baby's life was not going to happen. There were so many things we were given that we couldn't use for Gracie and watching other people open those same gifts stung a bit. I'm not sure how many, but there were definitely a handful of showers that yielded tears once I got home - - or at least to the safety and seclusion of my own car.
My days and nights are filled with constant assessment and analysis of how she is doing. How is she breathing? Too fast? Too labored? What do her secretions look like? What is her temperature? What is her coloring like? Does she have edema? Is she tolerating her feedings? Is she getting enough calories? Are the whites of her eyes cloudy? The list goes on and it is literally a running dialogue within my subconscious. I never stop thinking about these things. Ever.
Most eight year-old girls are going to slumber parties and have hundreds of play dates under their belts. I can count on two hands the number of play dates and birthday parties (that didn't include her brother) that Gracie's been invited to and can count on one hand the number she's been healthy enough to attend. I am grateful that she has her friends at school - - the kids in her class whom she truly enjoys.
(Since writing this last year, I have learned that she has stopped being social at school.
This was shocking and sad news for me because she is, at home, in the community and when we go pretty much anywhere else, incredibly social when she feels well.
So, now, yet another thing for me to think and worry about… why has her school experience changed so much…?)
Last Christmas, good family friends went to see The Nutcracker... three generations of women (the youngest the same age as Gracie) got dressed up, went out to dinner and enjoyed the ballet. I saw the pictures on facebook and out of nowhere came the tears. I cried hard, knowing full well my mom and I will never be taking Gracie to see a performance like that. She can't hear the music and we certainly can't be turning on the suction machine every ten minutes during the ballet. Sharing my love for the theater... all types... with my daughter was something I envisioned... and it just won't ever be a reality. So, we change our vision and go to
Bubblefestinstead... but that doesn't change the fact that I mourn these types of things.
I will never comfort her when her heart is broken over her first love.
I will never ground her for missing curfew.
I will never help her plan her wedding or pass down family heirlooms to her.
She will not call me to seek advice about life the way I call on my mom.
She will never surprise me with the news that she is having a baby of her own and I will not excitedly shop for her babies the way that my mom shops for mine.
These, amongst many others, are tragically sad things for me to think about.
Don’t get me wrong… I don’t think about them all the time, but I do, indeed, thinkabout them.
I let myself be sad for the experiences she will not have and what I will not experience with her.
And it breaks my heart to do it.
But I also don’t stay in that place too long or as often anymore.
Because of all the things that we mourn and all that we’ve experienced due to Gracie and through Gracie, we’ve gained a perspective that most people aren’t privy to… the ability to recognize the power and miracle of day-to-day moments, the knowledge that her needs and wants are simple and, thus, so are ours.
She doesn’t mourn what I do… she doesn’t comprehend the losses in the way that I do.
She need only to feel loved, give love, be healthy and be happy.
Knowing that, on the healthy days, she has all four of these gives me great joy.
And that joy helps me remember what’s most important as I dream for, fight for, hope for, advocate for and love my daughter.
