Tag Archives: advice

Reblog: What I Would Tell You

This is so heartbreakingly beautiful that I had to copy it over word for word. One, so I know you actually read it instead of following a link, and two, so that I could come back to it whenever I need some help getting through the hard days.  There are many times that I want to reach out to another special needs mom, but I can never seem to find the right words to say.   I don’t know her story, where she’s been, or where she’s at on this journey. Does she even want to hear from someone else who’s “been there”? I know there was a time I sure didn’t care about anyone else’s story let alone their advice or inspiring stories trying to tell me that it would all be ok.  If you are that mom, know that it WILL be ok.  There is so much that I could tell and I’d love to share, IF you are ready. For now, take the time to read this and find your strength along the journey and find comfort in knowing that you are NOT alone.  There is a sense of “sisterhood” amongst special needs mothers, and any one of us will welcome you with open arms and listen to you or offer our words of wisdom if you want to hear them, but if you just want to sit back and read and take it all in, that’s okay too. We’re here when you are ready.  This life we live is not easy and you don’t have to do it alone. With that, I leave you with this amazing post I came across recently. Enjoy.

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Originally posted at: Whatiwouldtellyou.com by Julie Keon

What I Would Tell You

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

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Filed under Family, Life, Special Needs Child

FTA Week, Day 3: Help for New Tubies

Today’s topic is “Been there, done that” where current tubies are encouraged to share advice to those who are new to tube feeding.  So, here are a few pieces of advice for anyone new to the tubie world.

First and foremost, I’d want new tubies to know YOU ARE NOT ALONE! Not only is that this year’s FTA Week theme, but it is probably the most helpful advice I can offer.  Knowing that there are others out there in your situation is one of the most helpful realizations.  I encourage new tubies/tubie parents to find local resources.  Join the Feeding Tube Awareness Foundation’s facebook page and look for others in your area.  It took me far too long to realize that finding others who understand is important for your own mental health.  As parents, we often forget to take care of ourselves because we are so busy taking care of and worrying about our children.

That brings us to the second tip, take a deep breath and take care of YOU! An over-stressed, tired, sad, scared parent is NOT helpful for a child.  Your child needs you awake and refreshed. Don’t be afraid to take a few minutes to yourself!

Third, everything IS going to be okay! Entering the tube feeding world can be extremely overwhelming, but no matter what you think, you WILL get the hang of it, you WILL learn how to do it all, you WILL be able to teach others, you WILL inspire others, you WILL become the expert! You might even come to love the tube! We certainly have.  I blogged about our list of pros and cons, take a look.

Fourth, (this one comes from Joseph) pay attention! The tube definitely takes some getting used to, so be careful to pay attention and know where the tube is at all times.  About 2 months after we came home from the hospital, Braxton was connected to the feeding pump laying on our couch.  Joseph went to sit next to him, and unknowingly sat right on the extension tubing and pulled the button completely out…balloon and all.  Braxton cried a little, and then we saw his shirt was soaked with milk.  As we moved his blanket, we realized what had happened.  The doctors told us what to do, but we still panicked.  I finally got a hold of myself, took a deep breath, and remembered what the doctor told us about putting the button in.  I deflated the balloon, softly pushed the stoma back into the hole on Braxton’s belly, slowly added water to the balloon, and then sat and hugged Braxton until he stopped crying.  We felt horrible.  After a few minutes, Braxton was just fine.  There was no blood or anything, and I think we were more scared than Braxton was.  I would add to not be so hard on yourself if it does happen.  You aren’t a bad parent, it can happen to anyone! We learn from mistakes…if you aren’t screwing it up, you aren’t learning!

Fifth, don’t be afraid to ask questions. Ask the doctors, ask other parents, send questions to FTAF.  You don’t know if you don’t ask.  Not just about tubes, but don’t be afraid to question your doctors.  If the doctor recommends a formula or procedure, don’t just say okay.  Ask why it’s necessary, what they are looking for, what your other options are, and if something doesn’t sound right don’t be afraid to challenge them on it.  YOU know YOUR child best! Always remember that YOU are the only advocate your child has, so don’t be afraid to stand up for them.

Tomorrow’s topic: “We Can All Use A Little Help” What we want friends and family to know about tube feeding, and how to be supportive.

For all Feeding Tube Awareness Week posts, click here!

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Filed under Family, Kids and Family, Life, Special Needs Child