What is the value of "Experience" to a disabled child?

I have been thinking alot about this topic. It is not that I want to "re-live" or do over those early days, months, years with Ethan, but I do wonder what things would have been like if we would have gone into special needs parenting with the knowlege and experience we have now, because of what we have been through. I truly think Chloe's outcome is better than it would have been because of our experience with Ethan....infact I will give credit to the experience that she is even alive today! It was because of all we had been through with Ethan and our CPR and First Aid training that saved Chloe's life when she stopped breathing at two weeks old on the way home from the doctor with a diagnosis of RSV....CPR and mom's instinct that something was wrong and I needed to pull over. I found her, nose and lips starting to turn blue, and very limp and not making any attempt to breath. In a moment like that you are beyond panic and when you have already learned what to do you go into auto pilot. I wonder now how my head was so clear in that moment I should have been in complete panic. My head was so in the moment of what needed to be done that I was able to identify that I was only 2 blocks from the hospital, that I was able to get her breathing and get her to the ER. I think that it was the fact that I was not panicing that led the ER nurses to believe that the situation was not so critical that they had me go and sit in the waiting room, where I continued to keep my newborn preemie breathing while I patiently waited....infact it was another adult waiting to be seen in the ER that became alarmed and alerted the nurses that they needed to get out there and do something for this mom who is trying to keep her baby alive. Even when we got back in the room and a nurse was bagging my daughter I was asked to help by stimulating Chloe so she would not get too comfortable and try to go to sleep as we waited several hours for Air Evac to be available to come and intubate my baby and transport her to a hospital with ECMO in their pedeatric ICU. If I had not been through what I had already experienced with Ethan, Chloe may never have survived that day. Then when she struggled with torticollis and plageocephaly and I was trying to get her the therapy and treatment she needed to correct these issues it was what I already knew about navigating DDD and early intervention that got Chloe treated so quickly, and my knowlege and confidence in providing Chloe with a "home program" where I do PT with her daily because the therapist only comes once a week that also resulted in her recovery. I think that if I had not known what I did she would very likely still have a misshappen skull and a significant head tilt. If I had only known when Ethan was small that these agencies and programs have a responsibility and requirement to fulfil what is on your childs IEP/IFSP would Ethan's condition now be different because he would have not had to wait so long for certain services because I was patient with case workers and didn't know that they were required to fulfil these obligations and I could file a greivance and services would likely have begun many months before they did. They don't tell you these things when you are new to it....you learn them along the way and have access to wonderful and open therapists and service providers. They don't tell you because they want to get away with doing as little as possible for as long as possible, and you as a parent are the ONLY one with the best interest of your child at heart. It is because of this I KNOW the value experience holds for a disabled child, and it is because of this that any child we adopt would bennefit from this....I had to become that "pain in the butt" mom who doesn't stop calling until she gets what her child is entitled to and not next month, but NOW, the one that won't give up until they are doing their job. This quility is SO IMPORTANT to a child with medical needs that go beyond the average child. I think it is this experience that alway earns me the question with new medical/therapy providers, teachers ect. "are you in the medical field?"....the answer is always, "No, I am just the mom of a special needs child, who has been through quite a lot, so I have had to learn all the terms, procedures, etc." Experience to a child with special needs IS priceless.

Little bits of news and more waiting....

....I probably aught to resign myself to this waiting game. We did get some small tidbits of info, leading us to the resolution that we most likely will not be pursuing the older of the two little boys we inquired on, and that with the other little guy, it will likely be some weeks yet before we get any additional information or news. In the mean time I am resuming normal school year life and trying to get things back into order after a summer without a house keeper, and also looking for a replacement housekeeper to keep on top of things here. We have been doing a lot of swimming with Ethan in the evenings and his endurance is building up and he is doing well at staying in the water for up to an hour and a half and with the use of his swim collar is able to swim to destinations and is tolerating, and even enjoying water sprinkling on his face and head, something a year ago he would not have tolerated. We have spoken to all of the kids about the one little boy's challenges and kind of explained the complexity and vastness of issues he is facing and the likely hood of him needing even more care than Ethan. I think they understand some of it and how it will impact them and the time that will be involved in caring for him and they are still excited at the potential, though I have told them over and over that just because we are talking about it, doesn't mean we are going to be chosen as his family. I think that is important for them to understand even though I really don't think they will see anything as permanent until a child is actually in our home. The girls are still hopeful that we might be matched with a baby girl, but the adoption world seems to flourish with boys and girls are a rarity. Either way, once again, we are waiting, as patiently as possible ;0)

My heart is racing again....

We inquired on two little boys today, and my heart is racing as we wait to hear back on either of them. Both boys have serious medical issues that are going to require a lot of care, but I am confident in our abilities and experience that we can handle them and help either one of these sweet children grow and thrive. Once again I find myself trying very hard not to fall in love, and it is very difficult not to want to reach out and do everything in your power to help these children who have so many struggles and challenges. Above all, I hope and pray that these precious little ones find loving families quickly so they can develop the bonds necessary with forever families to help them live to their fullest potential.

Weekends are HARD now....

....because there are no updates on photo listings, from agencies, or state social services. We have inquired on two little boys and have not heard anything back yet, also submitted our profile to another agency and have no update on that yet because of the weekend. Today, I will be cleaning house and hoping to hear something on either of the little boys we are interested in. I know it could be a very long wait, but hopeful that we will find our special child quickly!!!! We are hoping to adopt and infant, boy or girl, who has special challenges ahead of them, who might not be so easy to find an adoptive family for. We are certified for ages 0-5 from healthy to severely physically or medically disabled.

YEAH!!!!!!

WE ARE NOW CERTIFIED!!!!!!!!! Searching for our special child!!!!!!!!!!!!!!!!!!!!!!!!!!

60 days

Today is the 60th day since our home study was sent to juvenile court for certification to adopt, so I am hoping that it will be back to us by the end of this week! It has been an anxious wait....one I will be glad when it is finished and we can be ready to act when a child becomes available for us :0)

About us...

For Birth mom/family. I figured you might like to know a little about what we like to do as a family. We do a lot of things together. During the summer we love to go camping up in the mountain or up on our 5 acre parcel. YES we camp and even go hiking with the wheelchair....we actually have a stroller for Ethan that easily navigates mountain trails. We also love to go to the beach ( San Diego and Santa Monica ) and even though they provide beach wheelchairs in San Diego, we got Ethan a set for his own beach wheels for his wheelchair so he would be more comfortable since he requires a lot of support. We love to garden. We also love to swim. We cook as a family too....I can't wait to see what fabulous cooks our kids are going to be when they grow up because I never got this much experience at such a young age AND we make multicultural cuisine like Indian, Greek, British, Italian, Thai, Chinese, Mexican as well as American food....our kids even love Sushi!!!!! I love sewing for my kids and they love the clothes and Terry loves the money he saves not having to buy tons of new clothes all the time, LOL!!!!!!!!!!!!! We have a family movie night and a family game night, we do this instead of going out on dates so we are not leaving Ethan with a baby sitter, though we do have a sitter that is great with all the kids for the couple nights a year we do get out ;0) We also love to travel and see new places and experience different cultures and hope to get to do a lot more traveling when the kids are a little older. We have a tradition of sponsoring a child or children at Christmas, last year we were blessed to be able to actually meet the little boy in the orphanage we provided Christmas for and it was such a joy to be able to watch as he opened the gifts the kids all lovingly and thoughtfully chose for little Evan. Ethan so much wanted to bring him home as well as his brother and sister, but the time was not right for us. The kids also LOVE to make up skits and perform for us....they are often very silly. We really enjoy the time we get to spend together!