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| Madi 1999 |
When I checked on Madison very early this morning, I was so excited to see she still had her BIPAP mask on. After a year of fighting her with it in the middle of the night, when she was so asleep she had no idea she was consistently taking it off, and was not very cooperative about putting it back on, we made some recent setting changes & she is actually making it completely through the night some nights without removing it. This is huge and very needed now that we have oxygen attached to it, for a whole host of reasons.
However, when I awoke at 5:30 this morning to Abby yelling that Madison was throwing up, my initial sleepy thought was how I hoped she had taken it off after I checked on her last. She had not though, and this made an already scary situation of waking up sick, down right dangerous. I will spare you all the details, but it was a mess and there was a real concern that she might have aspirated during it.
Thankfully we got the ER at about the most ideal time.....7:30am.....right after shift change and apparently not a time a lot of people hit the ER. I have NEVER seen it so quiet there!! We got fluids, labs done, and a chest xray and thankfully all looked good. On the good side, it doesn't look like another infection.....on the down side, it looks like her GI tract is just not moving as it should. Her bladder seems to be sluggish right now too. We are HOME though, regularly dosing with Phenergen, and getting fluids in via her g-tube, and praying we can stay here.
Now....back to the regularly scheduled post!!
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Way back before we had CaringBridge, my ramblings took the form of emails, mostly to a Hypotonia List I belonged too (and still do). Back then, hypotonia was playing a significant role, mostly because we didn't have a lot else to work with. I saved many, if not all, of those emails, and recently was reading back through some of them when the thought occurred to me that some were worth posting here now. I considered editing the posts, and may still decide to go that route, but see some value in leaving them as they are for authenticity.....in some ways maybe they will have more impact if left alone, however, I will reserve the right to edit as needed.
So, a beginning to {Time Past Tuesdays}
6/6/99
Hi all :-)
Boy have I been learning about taking things one day at a time and most importantly APPRECIATING each day for what it has to offer lately. There have been times in my life where I was at the end of my rope and I have maybe been angry because of the lot I was dealt, or overwhelmed with sadness because someone I loved was in pain or struggling and I couldn't do anything (or atleast I thought) to make it all better. During these times I have been known to be very questioning of the BIG guy in the sky and why he thought I needed all this crap!!!! LMAO You know, one of those conversations that go something like, "OKAY, I have had enough, I learned the lessons, I have found all the good stuff thats come out of this difficult situation, I have tried to learn from it, I am a stronger person for it....BUT GEEZ, how much stronger could I possibly be right now and WHY have YOU abandoned me." There have only been three times in my life where I was this far down the road and really questioning of what was happening in my life and the first two times there were events that in my mind, could only be described as miracles and a true sign that there was someone out there that cared and I really hadn't been abandoned. Each time, being that I am a christian but not a highly religious person, I have been shocked and amazed and truly touched by these "signs" that seemed to be so impossible and have come out of no where.
Chance had his OT eval on Friday and there are no two ways about it, it was a bummer. Some major issues going on there and more than I had anticipated and it was hard to hear that in addition to the auditory processing disorder, language problems, Asperger's Syndrome and Lord only knows what else, he has some additional serious issues going on. I will share with you guys exactly what we are dealing with when I get the written report next Friday, but she tried to explain the things over the phone and in person with me. I left the OT rather low in spirits but it quickly turned around because I was picking up my best friend from online at the airport coming in from Boston as soon as we left the OT!!!!! We had a glorious weekend and it was amazing to be able to sit down and talk with someone about the issues that UNDERSTOOD!!!! Her youngest has hypotonia also and at 2 yrs and 2 months has NO speech at all, major sensory issues, and is across the board right now at a 12 months level. Anyway, she could actually RELATE to me!!!! And it was such a joy to sit and talk about the issues AND every other thing that could have possibly came up. I took her to the airport this morning to get her on a plane home to her babies and was hanging out watching her plane leave when the "sign" happened.
As I stood there at the window watching the plane begin to taxi down the run way, a gentleman was also standing there watching it leave. He asks me if I have friends on the plane and I explained who she was and how we met, which he thought was very cool. Somehow we start talking about my email lists and I am not sure what I might have said, or how he might have had a feeling, but he asked me if any of them were because of issues with my children(!!!!). Was VERY wild and when I said yes he asked me if I didn't mind telling him what the issues were. So, I tell him a bit about Chance, but before I can tell him about Madison he tells me that he has CEREBRAL PALSY!!!!!
What I had not noticed in standing there talking to him was how oddly he held his right arm and leg!!!! So when I tell him about Madison's issues we were both a bit freaked out!!! He told me not to believe
everything the doc's said and of course I laughed and told him I had that one covered....LOL. And we just chatted and he talked about his parents and how incredible they were and how well he was doing, etc etc etc.
So, I am thinking on my way home, still basking in the ***afterglow*** of my friend being here and the thought entered my mind, kind of out of no where, that this guy was a "sign" for me. He was "sent" to me to remind me that I really AM making a difference in my kids lives, that what I am doing now really will help to make things okay, that the hardships the kids are facing now really WILL make them better people, stronger people, more loving people. That, (and he actually asked me point blank if I felt guilty about their issues), I am doing all I can and that there is nothing I could have done better or differently that would change where we are now....and in fact, because of everything I have given the kids of myself all along, they are in much better places than they would have been without me. Of course, I told him that sometimes the guilt feelings seep in, and he told me, literally with tears in his eyes, how his mom had told him when he was 26 how sorry she was and he realized how guilty she felt about his problems. And then how he had let her know that he was BLESSED to have had her and his dad and that they were the reason he has been successful in life and he credited them with it all.
Makes me cry again just writing about it.....I NEEDED to hear this, and to hear it from someone thats BEEN THERE...well, what more could I ask for!!!!!!!!!! Now friends, consider this whole thing
meant for you too!!!!! His message was one for all of you as much as it was for me.
I am sure one could find that there may have been some logical reason that this happened in exactly this way, but to me it was nothing short of a miracle and came to me at a time when I was feeling lost and
abandoned yet again. What a way to renew my strength!!!! I sure hope all of you can get something from it too......all of us here are amazing and our children are as blessed to have us as we are to have them!!!!! And someday, I pray, it will be my Chance or Madison standing somewhere talking to a complete stranger able to say to them that they credit their success and ability to overcome some hardships because their mom and dad were there for them and in their eyes, did everything right. Wouldn't that be cool.
INCREDIBLY BIG hugs,
Kass, mom to Madison(30 mos) and a couple other incredible kiddo's :-)
A couple of notes to "wrap up the story"....
- My "friend from Boston" is still one of my dearest friends, Lisa. Her little one with hypotonia went on to be diagnosed with Fragile X just a little bit before we got our Mito dx, and he is now a young man navigating this world we live in.
- Clearly this was in the time before 9/11 when we were able to go all the way to the gate to see our friends off on their plane.
- I actually go back and read this story every now and again, needing that reassurance it gave me then. I marvel at how, only a year or so into this journey at that time, similar the feelings can still be now, 12 years down the road. It reminds me of how quickly and forcefully we are yanked into the world of special needs and all the feelings that come with that....and that, while things change, so much remains the same. This is not all bad, as long as you have that touch stone to remind you that the feelings are normal, and part of the process.
- Finally, some small details that I failed to share at the time, but with time and reflection became important to me. The gentleman was clearly successful and while I cannot remember exactly what he was doing, I do remember that he owned several businesses and was clearly happy with his life. At some time after the fact, another tidbit occurred to me....we walked out of the airport together that day, the gentleman and I. We parted ways at the door, with me going across the drive to the parking garage, while he went off to the right along the sidewalk, and yet, when I glanced over just as I was entering the garage I realized he had disappeared!! There was no logical reason that I should not have seen him walking along the sidewalk, and yet, he was no where to be seen. He had vanished just as quickly as he had appeared in my life that day.
