Megan. My little moomoo

Easton. What a cutie!

Here are my beautiful angels. This photo was taken just a year ago. They are so so sweet. They are about 28 to 30 inches in length. They still fit in their infant car seats.

I took Easton to the doctor Wednesday. He has had a cough for about 2 weeks now and I was starting to get really worried. Because of his condition, respiratory diseases will most likely be his eventual cause of death. He is beating the odds already and even though I know this is a terminal condition.....how do you accept that for your child.....I have the highest of hopes for his life span. I will try to upload a picture of him when I can figure out how, I am not to good on computers. He is beautiful. Most people who see him can't really tell what if anything is wrong with him other than he has a NG tube. They usually assume it is because he was premature. They are shocked when I tell them that he is actually 3 years old. I even had a nurse argue with me once about me being confused about his age. Anyway, there was nothing in his lungs to worry about, !!!!!, but I hate to hear him cough the way he does, it makes me feel so powerless when they get sick. He weighed a whopping 17 pounds! He has been able to put on a whole pound this last year. He length is harder to determine because he has multiple contractures in his arms and legs. I have thought about maybe finding a support group but, I have a hard time talking to and trusting people so that hasn't happened yet. Dakotah, my oldest son is 13 and he is in 8 grade. He is a huge help in taking care of Easton. They are connected in a way that is hard to describe. Dakotah can make Easton laugh when nobody else can. Zachary is 10 and he is in 4 grade. He loves to giggle and make up cool stories. He has quite the imagination. Hannah is almost 6 and she just started kindergarten this year. She is my scholar. Even in Kindergarten she is so concerned about learning that it just blows me away. She will probably be my rocket scientist. We also have 4 miniature schnauzers. Fritz, Bridgette, Greta, and Buddy. They are just like kids too. My dad is my only babysitter and he is a lifesaver. I couldn't imagine how I would even be able to go to the store if it wasn't for him. I tried once. It was a joke. Besides, most people don't understand the difficulty of trying to move these babies around and so they are not very accomodating. Sometimes I know you don't think of things and how they might be until you are put into that situation so I don't blame them. Dealing with special needs children sometimes can be extremely draining mentally and physically. I am blessed that they do not get much bigger than a 6-9 month old baby, it makes it much easier to care for them physically. The fact that they really aren't aware of their condition mentally is sometimes a blessing too. I would love to be able to talk to them and interact with them on that level, but this way they don't get hurt either. I try to find all the positives I can in this situation. Focusing on the negative can really put me in a slump. I still cry alot, when I think of the day they won't be here it is very hard not to. I try not to think of it, but I have to plan for it to be ready for it right?? I don't know. I have never had to deal with death before for someone close to me. I know I must be realistic, but I also have to hang on to hope and life, or I can't make it through my day. Belief in a life after this one has helped me tremendously. If not for that I don't really think I would still be here. It would be to hard. I believe that they are the way the are for a purpose. I don't know the puropse but I hope that someday I will.

My name is Vickie. I decided to do this as a sort of therapy I suppose. I have two special needs children. Megan is 7 and Easton is 3. They both have Rhizomelic Chondrodysplasia Punctata Type II. A big long name for a form of dwarfism that keeps my children the size of babies. They look and act like they are about 6-8 months old. They are my angels. It is not easy. I decided to stay home and take care of them instead of putting them in a home. I get depressed sometimes and I thought this would be a way to express my feelings without having to go anywhere. It hurts them to move so I try to stay at home as much as possible. I am 35 years old and I have 3 other children ranging in ages from 13 to 6. I never thought I would be able, mentally anyway, to take care of a child with special needs, more less two children. It is not impossible, I have found out things about myself I would have never known otherwise. Not to say there is not days when I am sure I am not handling my life's demands very well. I don't have alot of friends so I don't have many people to talk to, I am very shy and introverted. I am hoping that maybe this will not only help me but maybe help someone else who is in my same situation.