shock the bejeebers out of me.
For a while now I have had a few people share with me that there have been some whisperings being circulating concerning Parker’s health. It seems as if the author of these accusations believes that Parker really isn’t as sick as I “make people think that he is.” I’m not sure how one can fake a trach, or a g-tube. I guess I could have posted pictures of the stitches from Parker’s last bowel surgery. Or perhaps I should scan in the written results from his next echocardiogram.
What is down right mind boggling is that these accusations come from other parents…..parents who also have kids with Down syndrome. Some of these parents come from a local group for parents who have children with Down syndrome none the less. Some of these same people also lurk on a Trisomy 21 board that I frequent.
I can’t even imagine having so much free time on my hands, much less spending it hanging out in the shadows planting the seeds of doubt and mistrust into the minds of others.
I’ve spent the last couple of weeks wondering exactly why it is that I blog. Why is it that I share Parker’s experiences with the internet at large. And I came to the conclusion to just shut down this blog and let those who have nothing better to do with their time find someone else to point a finger at. If someone craves the distinction of having the sickest kid…… please, take it. I’ll even gift wrap it for you if you would like. That is a competition I simply refuse to participate in.
Last week a sweet new Mom of a brand new baby born with an Imperforate Anus contacted me via Parker’s blog. She had questions. Lots of them. And I remember being in her shoes not so long ago. I was able to answer a few questions, supply her with some information and give her the name of Parker’s nothing short of amazing Pedi.
And then I remembered why I blog.
I blog to help. To be a support to those who may be newly diagnosed as being pregnant with a child with an extra chromosome. To help them see that their baby will be a joy and a blessing. While they may be worried about what the future holds, I hope they see how much we love Parker and how much excitement we have for his future.
I blog to raise awareness of colorectal malformations. I understand the feelings parents experience with this diagnosis. I love being able to help give them encouragement and information.
I blog to raise awareness of a medical system gone insane with constantly increasing insurance premiums and medical bills that cost families their homes.
At times I blog to share my fears and to reach out for support.
And I am going to continue to do just what I have been doing. Regardless of what those hiding out in the shadows whisper behind my back. I know the truth. Those that know Parker know the truth.
And that is enough for me.
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Im glad you decided to continue to blog. I check on Parker daily, and I pray for Parker daily. I enjoy doing these things. I enjoy reading the love you have for your son, and how you would do anything for him(or your other kids). Its hard to stay positive sometimes in a negative world, but remember your support system is much bigger than the negative.
There are always going to be people in the world who are like this. Pray for them. Their hearts are not in the right place.
Yours is. I love hearing about Parker and his progress and his challenges. God made him who he is and so it must be good!
I don’t usually comment, but I read your blog daily. In fact, when one of my children was about to have a heart cath 2 weeks ago I searched back in your blog to find info about Parker’s. My other daughter just had her g-tube removed in March, so I am a kindred spirit there. My oldest is 5 and very medically fragile with a heart defect we are not sure is correctable due to PH. She and my 19 month old just joined us from Ukraine and I’ve never before felt like I needed so much input from everyone else on my kids’ lives and health. But I appreciate that you’ve “put it all out there” and share your experiences as well as allowing us the privledge to pray for you all. Praying for Parker, and for you– and for those that feel the need to contribute to your stress by sharing their negative feelings. God Bless, Meredith
Tammy, I have encountered some cruel people while blogging too. I dont know why people feel the need to try and sabotage others! I have been contemplating quitting blogging too. But then, a wonderful friend reminds me why I blog. I LOVE being able to come and visit you and Parker every day! Some days, the pictures of that little guy get me through the day! If you stopped blogging, I would worry so much. I know how you feel though. Being a mother, the second anyone says anything negative about one of my kids, the bear claws come out! Those of us who matter know that Parker really is sick. Why would anyone make such a thing up? I love your family and will continue to pray for you all. Something is wrong with the people who say that. They are obviously scared and angry and have to take it out on innocent people.
I love you all and will be here every day as a form of support!
Amy
I’m glad that you were shown the reason for your blogging. God’s love is huge on the web, but where God is you know who else is there too…
Blessings to you and to Parker!
I’m glad you are continuing to blog also. It makes me so sad that people do such mean things.
Tammy, I have been in your shoes so many times, myself. It is so disturbing to me, the hatred and anger that can be out..there. I sometimes feel like pulling my little girl in, hauling every picture and story I have of her offline and just hiding under a rock.
I have faced comments like: retard, braggart, child-abuser…some of my worst moments in my entire life came because I allowed THEM to have power over me. Not anymore. They lost their power over me long ago. You know what? I chose the same way you did, to let them talk. This is MY life. I know why I am blogging, I know why I share Ciarra’s stories. i KNOW babies have been born who might not have been, and mothers have made the difficult journey that might not have been ok with it if I hadnt taken the time.
We have been relatively lucky healthwise. (Although my girl is SO sick right now
) The people who go around saying things like this must be so lonely, dont you think? They must be so full of anger and bitterness, I feel really and genuinely sad for them.
I know we barely know you. But your blog button is on my blog, and Parker is way deep in my heart. You are one of those moms who tells the truth, but you arent asking for pity. You arent whining, you are COMMENTING on the situation. I enjoy how you face these awful obstacles with SO much grit. You and Parker are fighters. I have seen enough to know that your lives are painfully restricted by his illness….I dont believe I have ever seen pictures of Parker at the zoo or out and about being a normal little kid. His world is right there at home, and you make it a BEAUTIFUL world. I am happy that we have been able to help in some small way along your journey, and I badly want to help more. Sometimes just hearing you and listening is the best we can offer you. And I know you need that more than anything.
There are some people that seem to thive on negativity and anger. It seems every time I turn around I hear of someone else they have cornered and attacked. Most of those people slink off into the night. Not me, I am battle-tested with these losers. Not you, you are a fighter. Stand strong, we got your back.
Tammy,
I am so glad you not going to let the negative actions of others stop you from helping others and your self. Writing is a form of therapy. We need to get some of what consumes us out or we will crumble under the stress. I feel bad I do not get the chance to post as much as I want but have all the little ones in my prayers. I am taking a class in college right now that is teaching me how important it is to write about our experiences.So do not let the negative words of a few stop you from the healing process and sharing inspriration. Little Parker is truely an inspriration. I been having horrible female problems with yesterdays pain almost unbearable. When I was resting little sweet Parker came to me . I woke up still in pain but knew God said that if some one so small as Parker can be brave so can I. Hugs to you both
Joanie and Thomas
I’m so sorry you’ve encountered negative people like this! I’m glad that you have chosen to ignore them and NOT stop blogging – you’re right in that you are helping people with different situations. And even if you only help one person, or change one person’s mind/heart, then that is worth it. You and Parker have so much to share and offer! We love you guys! Hugs!
That’s wacky. I’m thinking I have the credentials to back up what you say and I’ve seen official records, so I can verify that you’re not exaggerating. If only we could all just support each other- even just in word, it’d be a wonderful world, wouldn’t it? Sighs… Stay strong, Tammy.
Good grief. Mean people suck!
Glad Parker is doing better!
Love, hugs and God Bless!
Kay
Oh Tammy, I’m so sorry to hear that. But I am so happy that you will keep blogging. I too check on Parker every day, and love your writings about him.
Love and prayers,
Megan
Man that makes me ill – I am so glad that God reminded you of just exactly why your blogging, you are a huge inspiration to me…I dont have “medically” fragile, children – Zachary is small for his age, but he’s pretty healthy – anyway, I come here to remind myself when I am having a bad day that, wonder really does exist! You are an amazing mother, and an amazing person – never change!
Parker is a wonder, and he’s in my prayers daily.
Some people are just creeps and do not get it what’s it like to have a medically fragile kid. Trying to keep your child alive is something that many people will never understand.
((HUGE HUGS)) I’m glad you’ll continue to blog.
People suck. We’ve gotten crap at our blog too.
Question for you: Aren’t the major health problems Parker has unrelated to the DS? As in, ANY KID could have them?
Also, some people really do just seek constant attention, negative or not, and people like that often think everyone is like that. There’s something wrong with their brains, or their soulds, or something. I don’t know.
Tammy, I am so glad you decided not to let mean spirited people change who you are and what you want to do. It is unbelievable to me that anyone would think that you are not being honest about Parker’s condition. Maybe the fact that you are so honest, yet still so strong and upbeat about Parker’s future, that people doubt you. You are such an inspiration. Almost too good to be true
Maybe these people who doubt you are just not accustomed to seeing such love, generosity, and strength. How sad for them.
Keep blogging. You have so much to teach and so many out here in cyberland care so much about Parker and his future. He is our brave, little, hero too!
Christine
Tammy,
Don’t Quit! I’m glad you blog. I check on Parker several times a week. I don’t even know you personally but I know your an amazing person! People who live to be so negative are sad people. I can’t say they are “bad” people, because I don’t know them. But i’m sure they are sad. Rebuke the negativity. You don’t have the energy for negativity. Keep blogging. Keep sharing. Keep teaching.
Tiffany In Texas
It is sad, but true, that some people cannot be happy if their life is not the worse case scenario.
Still praying for Parker!
I too read everyday and usually don’t comment, however I MUST add my input to this entry.
MEAN PEOPLE SUCK!!
I know that’s very forward and not a very nice way to put things, but come on you mean people. Don’t you have lives of your own to worry about.
Parker, I cannot wait for the day you sit down and put your very own entry onto this wonderful blog your mother has so nicely done for you. The world will hear from you and it will be amazing!
Tammy, though I don’t understand the mentality of some people I’m glad you found the grace to rise above it. I couldn’t go a day without reading how you’re doing, even if it hasn’t changed I scroll to look at pictures of Parker and rejoice in his little victories and find out how he’s doing. While big brother’s on a mission, so is Parker. He has a lot to teach all of us about perseverence and humility. Perhaps people say mean things because Parker really raised the bar! Perhaps seeing him reminds them of their short-comings? I dunno. We love you guys and to cease blogging would mean the mean guys won and they robbed us of the opportunity to grow and learn through the eyes of your brave hero. He and your family have taught me so much about what it is to be humble and diligent and the true meaning of “endure to the end”. But thing is you’re not just enjuring, you’re embracing! BIG difference!!
There’s no gain to spreading ill-will and yes, you do indeed “reap whatsoever ye sew” Perhaps they were jealous of the solidarity you have and how people band together to come to your aid? If so? get over it people! If the medical system wasn’t as messed up as it is, this wouldn’t even be an issue. Though you folks don’t have a “victim” attitude you are indeed victims of the twisted medical system we have and I often want to point congressmen/women and even political candidates to your blog so that it can be exhibit a , evidence of a system gone reeeally bad.
Keep up the good work Tammy. May your family be immensely blessed.
Oh and by the way? You’re “visiting locations cluster” map says it all!! The World loves Parker!!!
Ornery people like others to be as miserable as themselves.
Lucky for us, you don’t listen to them. {{{hugs}}}
Twitter: livingingrace
says:
People can be stupid. Period.
Don’t stop what you;’re doing. sweetie. You do it for you, and for those that it may help. Period.
And when the world at large seems to get to be too much, and you need a friend to remind you it’s ok, call me. Period.
You know I’m behind you 150%. Period.
I have no idea why my previous comment said “comment by tammy”, well maybe I do, I was tired, and apparently typed your name instead of mine LOL, sorry about that.
Tiffany
O.k., if you could only have seen my mouth hanging WIDE open as I read AND reread your post! I continue to be amazed by the cruelty of mankind and then on the other hand am rallied in hope of mankind because of families like yours. I for one am so blessed I found your site. Yours, Rhetts and our little friend Sam, came to me at a time when I felt I was the only mom to a child with Down syndrome AND major medical issues. Our community has a number of incredible families with children Down syndrome but none with health issues.I have often felt as if I am in a community all by myself with Zoey. If not for your blog and your unselfish sharing I would still feel isolated. So on behalf of the entire Needham family we thank the Hodson family for sharing the gift of Parker.
Oh Tammy, I so feel your pain. I am getting those same people saying that Rhett isn’t sick either, or that I am trying to get attention by copying Parker.
Like you said, how can I fake an NG Tube, or his oxygen, or all of his meds?
Andy keeps telling me to quit thinking about them. My blog has touched way more people than I can think of, and yours has done the same.
We are going to stick through this together, besides, Rhett and Parker have so much in common, not just medically wise, but in their likes and dislikes, they are eventually going to get over all of this and be able to play together some day.
We love you guys. I just can’t imagine not coming to your blog every day and seeing that cute little Parky face.
((HUGS)) to you and your whole family….
Pam and Rhett
Some people just suck.
I’m glad you didn’t let them stop you from blogging.
(((HUGS)))
Tammy, I’m shocked to read that people are being doubtful about Parker’s health. Who has time to make up stuff like that? I continue to keep you and Parker in our thoughts and prayers. I’m glad you decided to keep blogging as your experience does help others walking in the same shoes. Parker is a doll and I love reading about him and your trials and adventures.
Cris and Max from T21online.come
Oh Tammy, I am so sorry. We have been the object of scrutiny with Kennedy as well in the past. It’s so, so hard. I am sad for you
. I am very HAPPY that you’re going to continue blogging. We pray for Parker and all of you every day. Hang in there, and keep doing what you’re doing. The people who love you far outweigh those who don’t.
Tam,
Those people are simply ill themselves, only mentally. Honey do NOT let them bother you. You have so many people that love you and Parker and that not only believe you, but believe IN you!
We love you honey!
It’s a sad state when people have so little to do they spend their time making life more difficult for people who already have enough on their plates! I read quickly after you said you were considering no longer blogging – I had to know that you were going to continue.
Abigail comes home thursday, a precious little girl with DS and a very severe heart defect. Not mine, but one I love and can love on. She’ll remind me of Parker and I’ll pray even that much more often.
I’m glad you continue to blog. Don’t let the rumor mongers get you down. Just looking at the pictures of Parker’s sweet little face it’s plain he’s a very sick boy. You have many, many people praying for you and Parker. Nobody cares about the haters.
Some people are just too much! I am glad that you did not give up blogging and are still here with us. I blog for many of the same reasons as you do. I remember how hard it was to not know what having a child with a heart defect was all about. It is so shocking to get slammed with a medical diagnosis and it is calming to know that there are other parents out there that are willing to help you.
I am glad you are continueing to blog. people can say some mean things. It is sad to think they do that instead of doing something productive. I worry about son when he is sick occasionally(like now). Can’t imagine being in your situation and having a child sick or having to keep distance from people for fear of becoming sick. You are in my prayers and I am always telling my husband how awesome you are as a mom to equally awesome and of a obviously gift from God, Parker.
As I wrote to Pam~~Thank you for sharing your beautiful son with us. I too am reassured by You and Pam’s strength. I am always telling people about these guys and asking for prayer. I just know God has HUGE plans the these guys and it is gonna be BIG!!!!
Peace be with you
Kim and Miss T
I just read a few of your posts, and I can’t wait to read further, but I wanted to comment on your Nissen issue.
My son was born with Chronic Kidney Failure and received a g-tube when he was 6 months old after have an NG tube for a few months. He then had to have a GJ because he kept throwing things up and had really bad reflux. Anyways, my point is that we too were doing everything we could so that we didn’t have the Nissen done, but ultimately we ended up getting the Nissen because he developed a hiatal hernia and the only way to repair them is a Nissen. So we had been doing really good, but because of the force of all of his vomiting it caused us to HAVE to have that Nissen done. Looking back, since hind site is 20/20 I would have done the Nissen earlier. Our surgeon (Dr. Downey) was wonderful and he did the Nissen surgery and he listened to what I had to say. He even gave me his cell phone number if I had any questions because we were really worried about my son’s gag reflex which was really, really sensitive and he wanted to know how our transplant turned out.
I have been through a lot of what you are going through only we suffered a different disease. I hope that things work out for your and don’t stop blogging!!! This is your outlet and you have every right to vent, rant, cheer, and do anything you want. It also gives others the chance to learn and reach out and ask questions.
You know, it amazes me how petty people can be. Wasn’t there a post on Mormon Mommy Wars recently about something similar to this?? Amazing…
I think you’re fantastic. I think you’re a wonderful mom. And I think that the fact that you are willing to share your story and experiences is a strength to others!
Oh Tammy, I am so sorry that ths burden has been added to everything else you need to worry about. My baby with T21 doesn’t have the same health issues as Parker, but I have come to know so much about your family through your blog that I delight in the good news that comes your way! I think about Parker and how lucky he is to have such a devoted family!! PLEASE KEEP BLOGGING!
Your post is amazing, and so are you!
There are days when I get really frustrated and down dealing with Livie’s medical issues (and they aren’t a lot compared to what you’ve faced)So when I read your blog you give me inspiration and hope and I need that. Thank you.
I am sorry that there are some rotten people out there. Those people have serious issues and need to walk one day in your shoes…they would immediately realize what an amazing people you and Parker are!
Tammy and Parky, know you have fans, lots of them. Those that say those things are like Nicole said…ill. Don’t give them the attention they are seeking.
HUGS!
I am so happy you have decided to continue your blogging. I don’t understand people and why they can be so mean. I love your blog and I love all that you give by doing it. keep blogging Tammy so many people love you and Parker and you have helped so many out there. Probably even more than you know. Forget the rest they aren’t worth it!!
My heart skipped a beat when I read that you were shutting down your blog. Parker and your family are always in my thoughts and prayers, I would have felt lost without being able to check in on him. I am so glad one of your many reasons for blogging “revealed” itself at such a good time. Don’t you even think about going anywhere! Don’t even give those people the satisfaction, they don’t deserve it.
Hugs!
Rachel & Caleb
Dear Tammy (and sweet Parker),
I would have been broken hearted to find this blog closed…especially for such a reason. I’m with you–I continue to be surprised by people, especially those who have sick children, or who have lost them. I don’t often talk about it, but we lost a baby in 1999. The Internet was my only source of support (my poor husband and family were just clueless at the time of what I needed). Though I met some amazing people that I am still friends with to this day, I also met some very venomous people as well. Sometimes, I suppose folks use their grief/anger to lash out at others. It’s so very sad and not a way to honor the lives of these precious children. Hold your head high, my dear. You and Parker are an inspiration to many and are loved.
Amy
oh Tammy….people can be so cruel. But you have to tone those people out. You scared me….I thought what would I do without my Parker fix every day!! whew…keep on blogging and have fun. And enjoy the comments that decent people leave you.
I’m happy you blog too! Tammy, you are a great resource for other parents and families and an inspiration to so many of us. Our thoughts and prayers continue with Parker, you and the family.
Hugs!
I’m glad and thankful that you blog. I gain strength and courage from your strength and courage, and I don’t even have children with any of those health problems. I think you are an amazing woman, and you can’t let a few negative people get you down. I think the whole “anonymous” thing lets people think they can be rude or hurtful, when really, isn’t it better to lift and encourage?
I pray for you. My kids pray for you and Parker, and we are always hoping for the best.
Keep on smiling!
Tammy I know that you do not know me but Parker is on my prayer list that I pray for every day! To me it is just crazy that someone could think that you make up all of the illnesses/conditions that Parker has… it simply blows my mind. Obviously they must be so much more fortunate than you to have a healthy child and they have nothing else to do but to go around whispering behind your back that your child isn’t as sick as you portray. God help them when the day comes that their family/child is in need of prayers for sickness…. Karma sucks bad!!
Traci
Wow. It never ceases to amaze me how people can find the time or vindication to attack someone they don’t know, or barely know. Especially one who is going through what you are.
I guess the Internet gives a false sense of security and veil to those who wouldn’t dare be so vicious face-to-face.
I have also noticed that there’s a certain “I’ve got it worse” attitude among some groups of people…they need the most empathy, the worst case scenario, the hardest life. It’s sad to say, but I’m sure some of these people are jealous of you in a twisted, sick way. They recognize that Parker is very ill, and that it makes you more “worthy of attention or prayers”, or whatever their sick minds think, than them.
The reality, what they don’t understand, is that you, Parker, and your family have our prayers because you’re a wonderful, real people. You’re good and wholesome, and those of us who come here pray for all of you for the plight you find yourself in financially, emotionally and mentally, and of course, for little Parker, who is a brave, fantastic soul. Please don’t burden yourself with the naysayers who can’t see that. Lord knows you don’t need that burden.
I just found you and I will be reading! It is a shame that people are very sick in mind to think anybody could make up something like this!
I keep up with Rhett all the time and your name came up in Pam’s blog so…
I’m going to share my two cents. These blogs are so very important to your family, friends, and loved ones.
You are able to share stories that others might be able too. You are full of courage, strenght, commitment and hope, but you are also real in your pain, sorrow and anguish.
You and all those that blog regularly ARE HELPING OTHERS! Don’t stop because of a few people that somehow feel the need to tear others down. Someone once made a comment that “Do you think they realize what they are doing or do you think they are to stupid to know” They weren’t trying to be mean with the “stupid” word just trying to understand why people do what they do.
Continue to write and help others along with yourself, and you will be cotinually prayed for.
Continue to be you…to share Parker. You have no idea how many times I want to curl in fetal position and give up. Then I think of Tammy and Parker and the family that supports and loves them…and I realize how small my problems are.
Prayers, love and hugs.
sorry i have been away for awhile–been ill, but do not worry about me. i send you, parker, and your family love and prayers. everyone else has said what i have thought and felt all ready very well. cruel people exist more today then ever. i enjoyed the lastest pics.
Please continue to blog– the world needs more Mother’s who are willing to share their trials and in turn– share their triumphs!
This is the first time I’ve been here, but I plan to come back often, Parker seems to have a light that just shines out from him.
Thank you for putting a postitive spin on a fusterating thing,(pardon my lack of spell chek)
May God bless you,and yours with the Spirit you need to just keep moving forward!
Don’t let the negative affect you. There are people who feel they MUST have the worst situtation, and anyone who threatens their claim must be lying. I know it’s hard to ignore the negative, but please try. You know what you are going through. (And honestly, how do you make this stuff up?!)
You all are in my prayers!
When my little daughter died there also were people wanting to make grief into a contest.
Let’s say they’re not part of my world.
Just go on blogging and do what’s important to you.
By sharing your experiences your helping people.
Not only other moms. But also people who pass by and open their heart.
Hugs
I’m not in daily, roughly weekly, but I really need my Parkey fix! Personally, I see jealousy in this talk, after all, everybody loves on Parkey, sends up prayers etc. Would one trade a healthier child for the attention your blog draws, sounds like these folks might. I personally pray for the day that Parkey’s good health and vibrancy make this blog a recovery story, a success story.
Naysayers will come and go, but those of us who bring love are here to stay!