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Special Needs Sunday: How Do I Explain?

31 Aug

How can I explain what my life is like to people who don’t have a child with special medical needs? Is there any way they can even understand? I usually don’t even like trying to explain it, because it seems so daunting and I don’t want to be misunderstood as whining or complaining.  I explained before that I really don’t feel like I deserve more kudos because I have a special needs child.  If you ask me how I do it, I’ll tell you, “The same way that other parents do – one moment at a time.”  And I have lots of support and love.  I’m really not complaining.  However, there ARE many things about my life and the lives of other parents like me that you might not realize or understand.

For some reason, today I feel the need to give it a try. Maybe because I’m hoping that others will understand, at least a little bit, and that maybe a little bit is better than none. Maybe because I have a friend who lost her special needs baby this week after only eight months of life, and my heart is hurting so much for her because I DO understand (at least a little bit) what life was like for her. And how much her heart is hurting right now. Maybe I’m seeking a small measure of validation. Not for myself so much, but for my friend and the many others like her who are dealing with issues incredibly more serious than we are. For whatever the reasons, here’s my stab at a describing some things from the life of parents of children with special medical needs that you might not realize or have given much thought to before. (Because I’m a list sort of person, I’m putting it in list format, and, by “we,” I mean parents of kids with special medical needs in general, and our family more specifically).

  • We know the numbers of our medical supply companies by heart and phone in orders once a month or more.
  • We keep extra g-tubes and buttons stashed in the diaper bag and pantry, “just in case” and we’ve had to use them on multiple occasions.
  • We don’t attend church or many social events to avoid as much illness as possible. A common cold can have catastrophic consequences.
  • We worry about what illnesses visitors might be bringing into our homes and sometimes irritate guests with our hand-washing policy.
  • We try to pretend that strangers staring at our child doesn’t bother us, but it does.
  • We keeps lists of medicines, dosages, formula “recipes,” and pump settings.
  • We’ve used and understand apnea monitors and pusloximeters.
  • We’ve agonized through holding our child still for multiple blood draws, barium bowel motility studies, IV placements, x-rays, echocardiograms, and treatment administrations.
  • We know how to change a g-tube button and are not even fazed by the sight of the open hole to our child’s stomach.
  • We rarely go out because there are not many people capable of caring for the needs of our child.
  • We constantly worry we’re not doing enough.
  • We know that a speech and occupational therapist can help with feeding issues and the hoops you have to jump through to get a referral and/or insurance coverage.
  • We function on very little sleep. Even when our child is well-past infancy.
  • We’re not sure what to answer when insurance or med supply companies ask, “Who is your doctor?” because we have so, so many. We usually answer, “Which one?”
  • We know about the NICU, the PICU, PICC lines, and TPN, and know that many necessary interventions carry risks of causing other damage.
  • We are overwhelmed by the stacks of medical bills and insurance EOBs that we can barely keep track of that arrive every month if not more often.
  • We are often struggling financially to make ends meet due to all the medical supplies and services that insurance decides they WON’T pay for. Or even “just” to pay for our 20% responsibility. (To give you an idea: Jenna’s pump and supplies are $1400 per month. Her specialized formula costs $2000 per month. One prescription costs $100 per month. Four days in the hospital for pneumonia cost $25,000. And her 3 month NICU stay averaged $5000 per day).
  • We have a huge vocabulary of medical terminology.
  • We know all about pediatric weight-for-length growth charts.
  • We’ve seen our child go into surgery or under anesthetic for procedures multiple times in their very brief life and our hearts hurt every time.
  • Any outing becomes a complicated matter of working around naps, feeds, and meds, and requiring that multiple pieces of equipment and supplies come along.
  • When we hear the apnea monitor alarm, our heart stops and a tiny part of our brain that we try to shut off wonders “what if” the worst happens this time.
  • We love our child with all our being. Just like you.
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12 Comments

Posted by on August 31, 2008 in Jenna, Special Needs

 

12 responses to “Special Needs Sunday: How Do I Explain?

  1. iMommy

    August 31, 2008 at 1:34 pm

    I know it wasn’t your intent, but my heart hurts for you and for parents like you all over the world.

    These are the things that, if I had the power, I would change in the world. I’m proud to say that I “know” mothers (online) who have children with special needs, and I am honestly amazed at the strength you all possess.

     
  2. Heather of the EO

    August 31, 2008 at 2:49 pm

    I’m so glad you shared this. It doesn’t seem like complaining at all. It’s a harsh reality and I’m guessing any parent of a child with special needs will feel validated and understood because of your honesty.

    The thing is, maybe you DO deserve more kudos. Of course you’re doing what a loving mother would do, but it’s A LOT more than most of us have to deal with.

    What’s so impressive is the sense a person gets from this blog that if they were to say to you “WOW, you’re amazing,” no matter whether you’d want the praise or not, your response is all about the love of your daughter. And we can see and feel how much you love her by reading your words.

    Thank you for sharing this.

     
  3. denise @ EatPlayLove

    August 31, 2008 at 2:56 pm

    Thanks for sharing. Often times I don’t know the right things to say when people I meet have children with special needs, I often just put my foot in my mouth, which is almost worse to me.

    Thank you for giving us insight.

     
  4. jess

    August 31, 2008 at 4:57 pm

    first of all, thanks for sharing this. it sounds to me like in spite of it all, you are blessed and thankful. good for you! what a wonderful place to be.

    and second – my daughter’s name is jenna. i don’t know very many jennas. i’m always thrilled when i “meet” another jenna. 🙂

     
  5. psychmamma

    August 31, 2008 at 6:50 pm

    iMommy, Heather, Denise and Jess –

    Thanks so much for all your kind words and support. I love the connection of caring and support that I feel coming right through my computer through your wonderful words. It really means a lot.

    Heather –

    It really meant a lot when you said you can feel how much I love my little Jenna through what I write. I think that’s one of the best compliments I could ever hope to get.

    Denise –

    I’m not sure what you say that makes you think that you “put your foot in your mouth,” but I’m guessing that probably YOU might feel awkward and unsure of what to say, but it’s pretty unlikely that you’re offending other parents (at least I find that hard to imagine). We really understand that it IS awkward for others and that you don’t know what to say. In fact, it’s totally OK to say, “I’m not sure what to say.” 🙂 Just knowing that you’re trying to be supportive and understanding is what’s important and it means the world!

     
  6. anymommy

    August 31, 2008 at 8:14 pm

    Thanks for letting us into your world, so that we can understand just a tiny little bit. My heart stopped for a moment for your friend. I am so sorry.

    Jenna is an amazing little girl to have come through so much in such a short time. And, I know this isn’t what you were looking for, but I’m going to say it anyway because it’s true, you’re an amazing mom too!

     
  7. psychmamma

    September 1, 2008 at 6:40 pm

    AnyMommy –

    Thanks for the compliment and support. It’s amazing to have such wonderful online friends that I have never even met in person! I can feel your encouragement in the words that you type and that means so very much.

     
  8. Childlife

    October 2, 2008 at 4:30 pm

    So glad you joined in with Beyond Ordinary this month! 🙂

    Jenna is just precious and your post was such a great summary of what life under these circumstances is like. I’m sorry to say that I can identify every single wire and tube in Jenna’s photo and know what they connect to — My list looks like a carbon copy of yours 😉

    It is very hard to explain to others what life with a special needs child is like, but you do it beautifully. Thank you so much for sharing such an open and heart-felt post!

    ~Michelle @ 5MFSN

     
  9. Julie @ A Celebration Of Our JOurney

    October 3, 2008 at 8:07 am

    Thanks for sharing this. I don’t really have any other words…just thanks for sharing.

    Julie

     
  10. shinejil

    October 3, 2008 at 3:44 pm

    I’m grateful you took time to share this brief glimpse of your world. I just learned something.

    I’m all for complaining when necessary; it doesn’t mean you don’t love and get ridiculous amounts of joy from your daughter.

    Sending virtual hugs to both of you!

     
  11. Heather J.

    October 3, 2008 at 4:44 pm

    here from bridges …

    Thanks for this post. My son has 10 food allergies and an esophogeal disorder which required endoscopies and blood draws on a regular basis. Although my situation is not the same as yours, I often have people say “I don’t know how you do it!”

    The thing is, if you’re put in that situation, you just DO IT and that is your life. If it were any different it wouldn’t be yours (or mine). That doesn’t mean I wouldn’t “fix” kiddo if I could, but I would love him no less than I do now.

    I hope that makes sense …

     
  12. Stacey

    October 4, 2008 at 1:23 pm

    Thank you posting a heart-felt
    post that is honest and to the point!
    Your grace and clear writing shines so well!
    Thanks for sharing!

     

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