Finally an update

Oh my God, I really haven’t posted forever. But then again, sometimes no new is good news if you know what I mean.

This week, Jake is in Michigan attending 3 weeks of intensive suit therapy. This is week 3. I came back home last night because I have to work this week, my husband is with Jake by himself, which is something he has never done before. I am sure he will forget something here and there, but you know what, he needs the practice!!

The Make A Wish Foundation called and told us that they have approved Jake’s and our wish to have the entire suit therapy exercise equipment unit. We are very excited and grateful for this generous gift. The therapist in Michigan believes Jake has the potential to be an independent walker (with lots and lots of work), which gives us hope that with hard work, persistence, and faith that Jake will reach that huge milestone – walking independently. And to be honest, I can’t carry him anymore, he weights about 45lbs.

Another exciting news is that my husband and I will finally go on a vacation next month while Jake stays with my mom. His respite worker will come everyday to give my mom some break. Wow, we haven’t been on vacation forever! My husband is planning the whole trip, from the hotels, to the locations, everything. I don't know where I am going or what I am going to see. I said just surprise me...just take me somewhere, anywhere... :-)

Business as usual

I haven’t written for awhile, my days are pretty much split between work and Jake. Jake hasn’t done anything new since my last post, and if anything, I think his attention is not as good lately. It is very frustrating when he can not do some of the things that he did before. I see lost of skills from time to time, and it is very frustrating.

We found a house we really like, my husband is spear heading the effort, and I am keeping my fingers crossed that maybe we will have a new home in a few months. The reason why we are looking to move is solely for Jake. There is a good school for children with multiple disabilities in that area, and we want to move closer so the school district can approve Jake going to that school. It is a very long and complicated process for children with disabilities to receive education and related services in an appropriate school. The most important key in this matter is that the parents have to be strong advocates for their children so their needs can be met.

I went to a swim competition that my 7 year old nephew and 11 year old niece participated in. There were probably 50-60, if not more children in the competition, and more parents, grandparents, siblings were there. I went there with Jake, and to be honest, I was proud of my nephew and niece but other than that, I didn’t allow my mind to wonder because if I did, I knew once again, my heart will ache for what will never be for Jake, and what will never be fore me. I will never be one of those parents shouting and cheering in a swim competition, or any competition for that matter. But let me tell you, I will be there cheering when Jake makes his first independent step, oh, yes I will.