Hi Erin. What a beautiful family! I'm not sure how I ended up on your page -- I think I clicked on the backpack question. I'm sure by now you got your backpack on wheels and hopefully it was a Land's End one. My Kevin is 10 and going into 4th grade this year. Last year we got him one on wheels and it was a good decision as in the third grade they start having more stuff to take home. In the younger grades they don't seem to like them in schools; not sure why. But if you feel that Nicholas needs it just talk to the school and I'm sure it will be fine. It made a big difference for Kevin and turns out in his school all the kids tend to have the rolling ones. So he fit in with it just fine.
I live in Northern New Jersey and am part of the NJ FACES group. We have a great group of parents here and we try to get together for meetings and social gatherings every other month. We have lived with DMD for the past 5 years and are thankful that we found PPMD 4 years ago. It's good to have eachother to lean on.
I've been home with my son since he was born; before that I was in the corporate world in Corporate Communications. That is too busy a world to go back into. I had Kevin at 44 and he just turned 10. I have been thinking of doing something from home or PT and I was curious about Thirty-One. I looked on their website and the merchandise looks really nice and trendy. If you are open to it, I would love to discuss Thirty-One with you as I think it would be something I would like to try. We have tons of Pampered Chef and Tupperware hostesses here in NJ but from the Thirty-One map looks like there are only 7 consultants in NJ. Much more down south by you. It might be a good opportunity for me here in NJ. My e-mail is email@example.com and my home ph is 201-261-3141. Perhaps you could drop me a line and maybe we could arrange a time to talk. I would appreciate it very much. We are in the process of buying a one-level ranch with a full basement as we now live in a split-level home (the home my husband grew up in!) and it is just not working anymore. We have a lot of renovations to do to the new home to make it accessible and I would like to make contribute to the income in our family. Take care Erin and hope to hear from you soon.
we have 5 kids so I live for the moment everyday. When Wyatt's taking a nap and I'm cleaning or whatever, I feel so guilty that I'm having a quiet moment. Guilt is a terrible thing. He needs the nap, so why the guilt. I feel like I'm missing him being "just a kid" while he's taking a nap. Because a few short years down the line, I would kill for the 16 month old Wyatt back. The Wyatt without a care in the world, the Wyatt who doesn't know he's sick! Thanks for listening.
We are glad that we found this site too. When our older son was diagnosed with Asperger's we felt like our friends drifted away. They just couldn't relate to us. Now with Wyatt's diagnoses, we feel the same way. Obviously not our good friends, but people that we thought were friends. However, nobody, especially our parents really "get it" They aren't looking down the road, to Wyatt's future. Not meaning to, they say insensitive things. Example, we live in a 2 story with a basement. Clearly that's not the ideal situation for a DMD kid. So we've discussed moving. Both our sets of parents thinks that's crazy. They don't look past today. Wyatt's 18 pounds, I'll carry him upstairs, but what about when he's 80 pounds, what do I do then.
What about when he's 14, does he want me giving him a shower, no way. I want him to be as independant as possible. They have said, well I hope you don't expect us to move (their houses can't accomadate Wyatt either). Well of course we don't expect them to move, but we won't be able to bring Wyatt to visit them. They are set in their ways about holiday tradition, etc, well unfortunately, they may have to make some changes. Hopefully, they are willing to do that, The are counting on a miracle. I'm praying for a miracle too, however, I have to do what's best for him, NOT them. That's the hardest part, they love him, but they are in denial. I sometimes slip into denial just so I don't have to think about his future. But I need to face it too, so I can make his life as happy and as fullfilling as possible.
I love this site, because perfect strangers understand me more than my own family. That's hard for me to understand. I've met some fabulous people on this site who know more about me than people I've known for 20 years. Thanks to the internet, or I would be ALONE. Have an amazing day.
Hi, Erin. Sorry I wasn't able to meet you at the FACES gathering! Holly had a bad cough last week, and she developed a fever on Thursday morning. Turns out she had developed pneumonia!! We caught it really early, but hearing that word scared me!! Needless to say, we stayed at home this weekend. Seems every time an event comes up that I'm really looking forward to, one of my kiddos gets sick! How was your Cinci visit?
Hi Erin, Yes, would love to meet you on Wednesday night on July 9th. Offer is open still if you want to stay with us. There is enough room and independence for a new family to come. You have my phone number and here is my address: 6576 Carriage Hill Ln, Madeira OH. If you come from the Hospital, take I-71 N, take Exit 11, take a right onto Kenwood Rd and the a left on Dawson Rd. Carriage Hill is a small subdivision on the right. Our house is the last house in the cul-de-sac. Take care,
We live in Cincinnati. We have 3 boys, our "oldest" (he is still so little!!) has DMD, he is 4.5 yrs old. You are invited to stay with us with you want. We have LOTS of toys for the boys, and and independent area for you to stay. Many families have stayed with us and I think it has worked fine for them. I live 15 min from the Hospital. If you don't want to stay with us, we can still meet. Here is my email address: firstname.lastname@example.org and my phone number: (513) 765-9416
hey Erin - sorry I missed your call a few wks back - it's been sooo crazy w/ baseball 4 nites/wk & games on Sat... My hubby coaches both so he's tied up from 5:30-8pm every nite. I hope all is ok w/ you & family. I think of you often & pray for Nicholas every nite. I can't believe Conference is in a few wks. Also - I was asked to speak at a Harley Davidson/MDA fundraising dinner alongside Dr. Finkel ( the head of CHOP) - that's May 30th... wish me luck. call anytime xoxo
Thx for checking in yesterday - it meant the world to me that you were thinking of us. I hate the situation that we are in (both of us) but we can't change it, so we have to remain positive! xoxo perlita
hey Erin - thx for our talk a few days ago. It's good to speak w/ someone who knows how I'm feeling. I think I told you this Friday is our CHOP appt for Levi's genetic test results... can you believe they don't have them all back yet; now we are re-sch for 3/27... bummer... I want to just get this part over.
hope your having a great day! perlita
Thx for the positive feedback. I'm just scared for our Levi. He's the sweetest little guy & his big bros adore him. We have a great family support w/ both sets of grandparents blocks away, it helps! We are planning on attending the June MD Conference in Atlanta, are you? Thx for offering your # - I would love to talk w/ you:) perlita
Hi Erin - got your info thru Jill Castle from Arizona. Our youngest son, Levi has MD (most prob Duchenne) - we found out Xmas Eve & it continues to be brutal. I'd like to learn more on how mom's handle their OVERWHELMING stress/grief... I'm falling apart. I just want HOPE that our sons will be here for a long time. perlita
I am sorry, I never replied to your message. YOu are welcome to use my poem, but since it is going to be used in many published items in Australia please make sure it is referenced as mine. I would hate for anyone to take the poem and pass it off as their own. It is something I want to stay as belonging to James, but also something I want the whole world to read. I want people to know how we feel, and feel something in return. The power of words can be amazing, and we are hoping to reach many people with this poem, to try and raise more awareness and hence more money for research.
By the way, your son is just adorable. In fact, you have a beautiful family. Please share your son's caringbridge site with me, I'd love to read it.
It is next to Luling off of I-310. you would take the Hale Boggs bridge over the miss river. We are about 30 min from Downtown New Orleans and about 45 min from Houma. So will ya'll be going to the game?