thespecialparent.comSpecial People Parenting Special Kids

I was sent this by a dear friend of this blog and just HAD to share – because I’ve been on BOTH sides of this and hope that it makes all of us take a second before we too are the pointers…..

Why Doesn’t She Just…?

Written by Michelle

See her?

That mom over there?

Why doesn’t she just…

…Leave her baby in the nursery at church?
…Give it a rest with the hand sanitizer?
…Breastfeed?

Or that one — right over there — why doesn’t she just…

…Make her child behave?
…Stay home?
…Get a sitter?

What about that one — why doesn’t she just…

…Stop trying to put her child in with the “normal” kids?

Because she cannot — because she knows the nursery won’t pay close enough attention to her baby’s allergies, because her baby has reflux so severe it would break your heart if you really knew, because her baby has a skin condition and people say and think the cruelest things when they get a close look, because she’s the only one that knows how to care for her baby’s trach, g-tube, medical condition — she and her family are the only ones who are able.

Because she knows it’s worth the risk of offending someone by offering a bottle of hand sanitizer. Because she knows that her baby is only one well-meant cuddle away from another three-month stay in the NICU.

Because breastfeeding isn’t always as simple as it sounds. Because hours and hours of sleepless nights and stressful tears while her child’s life hung in the balance have ravaged her body to the point that it has nothing more it can give — no matter how much she wishes it were otherwise. Because the dream of nursing her own child died while her baby struggled to survive with the help of ventilators, trachs, feeding tubes. Because she won a hard fight against breast cancer. Because her child cannot or will not eat, leaving her to plan for future therapy, the next surgery, the next specialist appointment — while she searches for answers, diagnoses, treatments.

Because bad behavior isn’t always synonymous with bad parenting or spoiled children. Because she’s doing the best job possible in a challenging set of circumstances. Because her child has autism, asperger’s, touertte’s, down syndrome, schizophrenia, fetal alcohol syndrome — and after a full day of doctor and therapy appointments the stop at the grocery store just wasn’t optional — much as she wishes that it was. Because you just happen to be seeing her on one of the very worst days of her life.

Because she’s already stayed home for months. Because she deserves fresh air as much as the next person. Because her child does too. Because she’s working hard to give her child as many normal experiences as possible. Because others need to learn to be compassionate.

Because the possibility of a sitter isn’t a reality for everyone. Because she and her family are the only ones who know — the only ones who know how to calm her child down, how to give the injections, how to get her child to eat, what to do if her child seizes, how to vent her child’s G-tube, how to run her child’s feeding pump, how to flush her child’s port, how to change her child’s trach, how to assist her child to the bathroom, how to tell when it’s time to take her child to the ER or just time for a nap, she and her family are the only ones who know how to keep her child safe.

Because her child deserves a little bit of “normal” in this life too. Because her child, like every child deserves the best that can be given them. Because she sees the child when others see a disability. Because her child matters.

Because she’s right to teach her child to try, to aspire, to dream.

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Oh you know it – I’m in heaven – It’s American Idol time again and I too can revel in the sublime to the ridiculous that they have in contestants. It’s a new season and they are starting in Phoenix. I haven’t decided on this new judge, Kara. Right now she seems like the “sane” Paula. As for contestants fairly unimpressive group and then you know it’s coming -  the “story” of the night. His name is Scott McIntyre and he’s a piano player and a singer with a real Coldplay sound who GRADUATED college at age 19 – oh did we mention he’s visually impaired??  He sang one of my favorite Billy Joel songs and I thought really brought his own sound to it.

Sometimes I worry about this however – did they pick Scott because he’s token disability boy or is he going to be given a fair shot? Only time will tell but he was truly talented. They said they gave out over 20 yellow tickets – if what they showed so far was any indicator of the talent pool this season Scott’s a top 10 entrant…..Obviously it’s early – but I’d love someone with a disability who has TRUE talent – which Scott clearly does – be able to go through and show to everyone how people can and should be judged on their merits not their challenges.  I look forward to seeing how this goes once we get to Hollywood! Go Scott!

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Just felt so wonderful about how many of you either posted or emailed me about the G-Tube and I really appreciate all the kind words of hope and support. Katherine returned to school this morning – a bit sore but over all doing well. The feedings so far seem to be going pretty well. The eating? Well we’re working on that So far…..so good!

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Katherine’s pancreatitis continues to have long reaching complications. Not only has her way of life had to change, not only has her look changed from the drastic weight loss she has encountered, but her look is about to take yet another turn. Her GI who I love is telling us that Katherine needs a G-Tube (which is frequently known as a feeding tube. This is happening tomorrow. While we are still waiting for some details, her dad’s flying down tonight and this thing is happening tomorrow…which is of course where the problem comes in. How come my usual solid footing is so freaking weak this time.

I guess overall I’m certain we are doing the right thing. It is just that some people I trust spoke out against it and I guess it shook my confidence.  I guess that it is to be expected. Not everyone is going to be on board with an invasive procedure – no matter what it is. I think that most parents have that problem to some degree. You want to be so certain you are doing the right thing you rehash the whole thing in your mind over and over until you eat your gut in the process. Sometimes it’s particularly hard because you are weighing (like I am) the variety of issues that your child has going on and how this one issue (in my case, Katherine losing so much weight) is impacting all these various issues.

Where I have come down is that no matter how much I value and trust the voices of dissent on this, the people who I trust most – me, her GI and cardiologist and my family -  Joan, dad, his wife Mary and my husband have all supported me in this decision. I have a further network of friends and family who have also encouraged me to just think it out logically – actually making a list of reasons why I think I should do this and why not – and it’s really helped. Sounds like something I might have done to make a decision about who to go to prom with in High School (although that wasn’t ever an issue! LOL)

Hopefully this is as temporary as we plan it to be and that it gives Katherine an additional tool to gain weight, to increase her appetite and allow her to gain her strength back and then maintain it on her own so that this will be a brief blip in Katherine’s history.

Do any of you second guess yourself on all the decisions that have to be made for your kids? How do you go about making these decisions? Do any of you have kids with a G-Tube? Any advice you’d give me on care, feeding, anything I should know? Please feel free to share!

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New Year is a time when people are celebrating new beginnings, making resolutions and looking forward to the year that is coming. It is probably in this vein that the John Travolta/Kelly Preston family went to the Bahamas with family and friends this weekend. Which makes Friday’s events so devastatingly tragic. Parents should just never outlive their children. While there is no certainty to the cause there is a lot of talk about Kawasaki’s Syndrome (KS) which Jett had as a child. But there is also talk of Jett having a seizure in the shower and then being there for some time before being found. Of course it’s new and the details are incomplete. Apparently there is even a rumor that Jett was autistic but this has been denied by John Travolta (it should be noted that scientology, the religion practiced by the Travolta’s, does not recognize autism as a disorder).

All the speculation can be done by someone else at some other time. I think at a time like this we’re all special parents – because no matter what all our children are special. Jett Travolta is only a bit younger than my daughter Katherine. My daughter is sleeping, breathing in her bed tonight. Her younger brother is in the next room letting out some very cute baby noises while he sleeps.  Jett is not with his family. It is not natural, not normal, it’s not even fathomable.

I’m not a big “resolution” person per se…mostly because I used to have all these good intentions – but my follow-thru was fairly lacking…like many people My new years tends towards reflection rather than idol promises that I’ll inevitably bail on 2 weeks in. I had already had some thoughts about this past year. It was a rough one on so very many levels. Katherine’s bouts of pancreatitis, her behaviors, my own struggles with RSD – I wasn’t going to be weeping as 2008 left. Because of this I felt like I had lost some of the joy of my kids. No – I’m not meaning the rosy Carol Brady “I never cook, have a maid and my children are beautiful and annoyingly perfect in every way” kind of joy. I am talking about that every day joy of savoring your kids victories, the simple observations they can make which just make you belly laugh – unless you are too caught up in being overwhelmed in the every day. And then a news report like this catches me like an avalanche in snow country.

For the Travoltas there is an abyss they must struggle to pull themselves out for the sake of their other child, Ella, who will also be struggling to cope with the loss of her big brother. For the rest of us watching the news on this it could be a blip on the screen, a moment of silence as a fellow parent for those whose suffering that you can only imagine. I would emplore you to make it one more thing. I would ask you make it the impetus for taking time each and every day – even if it is only a few minutes to savor your children.

We all spend time with our kids each day – we feed them, clothe them, bathe them, get them to and from school, doctors, therapists etc. This isn’t the part I am talking about. I’m talking about making sure at each point you try to get to their level, to watch the world with the wonder your child has for it. To truly LISTEN to what they have to say – no matter how mundane you may think it will be. Sometimes its so crazy busy we get into a rote pattern with what has to be done – eating, bathing, for some of us medications, therapies and that’s only their stuff! Its times like this where some high profile individual loses a child that we need to make very sure that that death was not in vein. I think one of the best ways to honor the life of that child is to make sure that your child benefits from it. Let them benefit by having some truly special time each and every day with you.

Each day is precious and you never know when it will be the last one. Don’t make it a time of regret for all that could have been…take today to make memories that last a lifetime, and beyond.

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