This is something that we have struggled with for quite sometime. It is hard for us to “REACH OUT” outside of our family. Even though we have been very fortunate with so many things in our lives and the family support we have had, we still find ourselves worried about being able to have the things we need to take care of her and support her. We are so proud that our daughter is making amazing progress. We are so blessed to have two such wonderful daughters. This is credited to not just with all the family support, but along with all the therapists, providers and doctors. Sarah would not be where she is at now if it were not for a combination of support and services that she is so very fortunate to receive. Her continued progress does rely on all of this as well.
Times have been very hard for us and we have made so many sacrifices. We lost our home due to not just the economy, but with my husband being the only bread winner. I am unable to be employed because of all the needs Sarah has had and still has. Her health and all her issues are so unpredictable and I have to be there for her at a moments notice. Anywhere from school issues, health issues ect… to on going doctors appointments and just her health in general. And when Sarah gets sick, she really gets sick. Since she can not talk and there is only so much we think she comprehends, it is a constant guessing game and literally all day and night comforting.
However, sacrifices have been so well worth it because it has allowed me, her mom, to really be there 100% for our daughter. She has blossomed and progress more than we ever hoped and dreamed for. On the other hand, it does not change the fact that we are still relying on a single and unsteady income and will be for the next several years. So our wishes are not for us. The fact that our daughter is healthy at this time and is progressing is enough for us. This is to be able to continue to support her and to be there for her. We need to be able to do so and this is why we have the WISH LIST. Here it is....
WOODEN SWING SET - Sarah has loves to swing. Swinging is extremely good for her. Since Sarah has Sensory Integration Dysfunction (SID), Swinging of various kinds are used to help regulate the vestibular system and some can provide proprioception for calming kids down and increasing body awareness. It also help calm her down when she is having high sensory issues.
Baby Cam - This will help us to try to track why she is waking up in the middle of the night and help us track seizure activity. With the new medicines she is on, it will take a while to adjust, but we still need to track them to help us help her neurologist.
Mini Van – We have 2 vehicles that are slowly and surly falling apart. We can not afford the cost to get them both fixed like we need to. Darin needs a vehicle to go to work and I need one to take Sarah to school and to doctors. With Sarah growing and getting heavier, it is getting extremely difficult to carry and pick her up and put her into her car seat. We do travel a lot to doctors and they are at least 30 to 50 miles one way. We may even have to take her to a feeding clinic that is out of state.
Feeding Clinic - We would like to take Sarah to a feeding clinic. This is not covered by insurance, but is detramental to her health and life. We are looking into several to see what can be offered.
We realize these are very expensive items. Since we are literally living pay check to pay check just with our living expensives only, there is no way we can afford any other payments on anything outside of rent and utilities.
Hopefully soon I can go back to work and begin to contribute again to our household expenses and maybe one day be able to start affording the things we would like to have, but for right now,my job is helping and taking care of Sarah, my obligation is to Sarah, to both Sarah and Hannah. I know it is next to impossible for people who have healthy - typical children to understand, to really understand the importantce of what our priorties are in our life.... as
Darrell Ankarlo says....
"Enjoy today and make it count because you will never ever get it back.
In all of eternity, this day will never come back around again so use it wisely!"
Darrell Ankarlo ~ KTAR
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