Sunday, March 3, 2013
I feel so blessed and I hope I continue to feel that way. Even with the stress of the sequester resulting in Tim having his income substantially decreased, I have felt blessed during these past few days. That's not to say that I'm not angry about what's happening in our government that is causing so many federal/government employees to be furloughed. I can get on my soapbox about that but I'm going to choose to write about being blessed instead. Thankfully, Tim still has a job for now.
As some of my friends know, I am putting together an Easter egg hunt for people (adults and children) in my surrounding community who have special needs, whether it be mobility issues, visual/hearing impairments, or developmental delays. I was inspired last year by my beautiful daughter to do this. You can read about that HERE. I've never done anything like this before so it will probably start out small this year, which is fine. I've already gotten good feedback on it and have had several people offer to volunteer to help out on that day. The church where this is going to be held has been gracious to offer space. The church also made over 200 copies of the flyers which saved me a good amount of money already. On top of that, one of the ladies from the women's ministry department has donated boxes of candy, small toys, etc. I am so excited. One of the parents has been in contact with me and has offered to help me contact retailers about donating items. Chick Fil A is going to provide 50 of their famous sandwiches. And I will also be receiving 100 coupons from another Chick Fil A. The church has placed an announcement in the church bulletin and in their monthly newsletter to help me spread the word about this event and to help me gather donations of whatever people would like to donate. I'm hoping that my anticipated budget will already be slashed by nearly half with what I have already received or been offered. Whether or not there is a good turnout for this event, I am already excited about doing it again next year because it will be even better. I have more ideas, thanks to a friend who provided a link to a blog that describes a special needs egg hunt in another state. This year's event will be a learning experience, for sure.
I've shared about this previously, but I continue to be blessed with the opportunity to tutor a young man who has autism. I really hope I can help make a difference in his life by reaching out to him and tutoring him. I know he really appreciates that I am taking the time to help him.
Going back to this sequester issue, I have to say that I am very thankful that Tim and I have been very wise with our finances well before we had our children. I feel blessed that despite the lack of example I had during my childhood, I have mostly been responsible with finances. Like just about most other people, I have made some foolish choices in regard to spending but thankfully, that has not been a chronic issue for me. When our oldest child was born, it was decided that I would not return to full-time employment and that I would stay home full-time with Jackie. Though we are far from rich, thankfully we were able to afford to cut back to 1 salary. I was planning to finish my Master's degree and enter the workforce within the next couple of years while Jackie was a toddler. That is, until we received the biggest surprise of our lives... I was pregnant. With Ben. Without regret, our plans were changed again. I am thankful that we were financially able to continue to support our family on a single income. However, it was not easy. Jackie's many therapy and specialty appointments already put a good sized dent in our income. Then at 18 months, it was determined that Ben needed speech therapy along with occupational therapy. Now I had 2 children with special needs and our monthly medical expenses just grew a little bit. I feel blessed to have insurance coverage and that it has covered most of my childrens' needs. The copayments certainly add up, though. (As well as the gas bill to drive to said appointments). Then there are the activities that have been recommended by therapists that, of course, are not covered by any type of insurance. Gymnastics for Jackie and Ben. Piano lessons for Jackie. Other activities have been recommended but we have neither the time or finances to do everything. None of those extra activities are cheap, either. When I sign my kids up for certain activities, it isn't just because it's for fun (that's part of it) but I choose activities that will benefit my children physically. I feel blessed that we were able to provide this for our children, however, that may change with this negative change in Tim's income. Thankfully, Jackie has decided to quit gymnastics (girls were being mean) for the time being and is now taking karate for free! That was another blessing that we received this past week. There is a martial arts instructor who teaches the classes at church. For free! Jackie just started yesterday and she is so excited. Horseback riding (hippotherapy) is another highly recommended activity for Jackie. In the past, I have contacted a few organizations that supposedly offer free hippotherapy provided by volunteers and/or physical therapy students. Unfortunately, I never had success getting anybody to contact me back. I had given up on it and figured that we were just one of the unlucky ones. This past week, Jackie's occupational therapist gave me information in which a university in St. Louis is looking for young recruits for a study in hippotherapy. From what I understand, the hippotherapy is free for the participant. I am going to contact the school this week so please pray that we can have success. I really hope we can get Jackie into this study. Jackie has been on a horse before and she loved it so I know she would get a lot of benefit from something like this.
Again this past week, a fellow "special needs" mom shared with me about an organization that grants wishes to children who have medical issues that are not necessarily life-threatening. The child can have CP, spina bifida, a syndrome, anything that is chronic or permanent. I was strongly encouraged to nominate Jackie for this. The more I thought about it, I decided that Jackie deserves a chance at this. She has been through so much in her life. Most people have no clue because Jackie looks so "normal". Jackie had a rough start in life from the very beginning. Not only is it suspected that she suffered a stroke, but she was also very jaundiced (which caused her to have to stay in the hospital) and she was diagnosed with "failure-to-thrive." Jackie was a very frail baby. I can admit now that I was so afraid that my baby was going to die during that first year. I was a such a mess. But Jackie is such a fighter and continues to be such. Jackie had an MRI at age 6 months which led to her diagnosis of CP. She has been in weekly therapies since then. She started speech therapy just over 1 year of age. Thank God for Early Intervention! Jackie was 23 months old when she had her first foot surgery. She then had a major (and very painful) foot surgery at age 5 years. She receives spine and hip x-rays every 9-12 months because she is at risk of scoliosis and hip dysplasia. The scoliosis risk is due in part to Jackie's posture (thanks to CP). The hip dysplasia risk is due to the fact that Jackie is a female and was breech the entire time I carried her before giving birth to her. The risk has to do with estrogen development. Jackie has been through a lot more than most of her peers. She is a fighter, a trooper. It would be a real blessing if she could be rewarded with something that would allow her a break and not worry about therapy getting in the way. She really wants to go to Disney World but more than that, she wants to see Winter the Dolphin. Both of those are local to my mother-in-law, with whom we stay when we go to Florida. How cool would that be?
One more thing. This afternoon, Tim received a phone call from the pastor of our church. Apparently, somebody wants to help us financially to get Jackie's hearing aids. We recently found out that Jackie could really benefit from hearing aids in BOTH ears (I knew it was at least one ear) due to mild to moderate hearing loss. Hearing aids are far from cheap (minimum of $2000) and unfortunately, our insurance does not cover them. I don't recall telling very many people about Jackie's need for hearing aids. I know I told just a handful of people. But somehow, word has gotten around about it. I'm not sure how I feel about this. I have a difficult time receiving, especially generous gifts, but this is big. We can't accept it. We're not rich. We're not poor, either. We are not in deep debt but it has been very difficult to save much since both of our kids have special needs. We didn't plan for this but this is what was handed to us and we're doing our best to provide the best for our children. I still cannot fathom accepting such an offer. I have worked hard for nearly everything I have (as well as has Tim). I would feel guilty accepting such a generous gift. With this sequester (and subsequent pay cut) looming over us, I was planning on holding off on Jackie's hearing aids for another few months anyway. We will get them eventually. Whoever has offered such a generous gift, I am very thankful for thinking so kindly of us. I often feel like we're such unimportant people, even at church, but this has made me feel loved. I don't know by who but I feel loved by them. And I am touched and I feel tremendously blessed by them. So, whoever you are, thank you for thinking about us.