Two Choices - Money or Prayer for Chloe's Speech

As many of you know, Chloe still has severe speech delays. We are doing private speech therapy 2x per week and she also receives speech at school. She is making painfully slow progress. We have seen the power of prayer through the years with many family members and most recently, we have prayed for Chloe's aggressive behaviors (especially hitting) to diminish. We tried to pray for this daily and her behaviors have improved a lot. She doesn't hit Quinn nearly as much as she used to. She still gets frustrated when she cannot communicate and this causes her aggressive behaviors to resurface at times. I guess what I am trying to say is that the prayers about her behavior seem to be working.

That said, we thought we would ask you for one of two things. Since the kissing the Blarney Stone is said to give the gift of eloquence - we thought we could ask you for a large donation of money to go to Ireland. Obviously, we would need tickets and lodging for four. Quinn still requires speech therapy 2x per week and we are hiring a private therapist for the summer. It would be important that he also kiss the Blarney Stone. Traveling overseas with both kids would be far too stressful for just one parent so both Joe and I would need to go. As you can see, this would be quite expensive. So sending a large check with Blarney Stone in the memo would be a very thoughtful thing for you to do. Or if you would rather...

We would ask that you would pray for Chloe and Quinn regarding their speech. Quinn is making great progress and I am confident he will continue to do so. In reading what other moms have to say about their kids with PTLS, I am feeling discouraged. Many of the kids don't speak well even at much later ages. A couple moms posted and their kids are 4.5 and 6.5 and they sound a lot like Chloe. Their kids have been through all of the same therapies & treatments. Their parents have worked with them. We know we have to continue to do that but we feel like a band of prayer warriors will do Chloe more good than all of the therapy in the world. Please pray.

If I had to choose between the Blarney Stone & prayer - I choose prayer. I hope you will too.

Love,

Amy

Shay Reminds Me of Chloe

Alex Hoag Kid's Run (Quinn, Coco, Parker)

Check it out - No training wheels

Daddy & Coco at the Alex Hoag Run

One of Chloe's former therapists sent this to me today. I have read it before but the older Chloe gets the more I cry when I read it. No one wants to be included more than my little social butterfly. I thank God for my friends who try their best to include Chloe. A while back, my friend Laurel invited us to decorate cookies for some holiday. Would this have been easier to do with out Chloe? Heck yeah! Did she invite us anyway? Yep. Chloe ate more than her share of dough, dumped sprinkles, broke cookies and when we were done, Laurel's floor was a cross between a sandbox & a playdough pit. Has she asked us to do other things since? She sure has. She recently told me that she thought her boys would be better people because of knowing Chloe. Talk about being a proud mommy. How did God know just what I needed from a friend when he brought Laurel into my life? Another friend, Dena, has been keeping Chloe for me on Tuesday afternoons so that I can take Quinn to speech. Dena's daughter, Leila ("WeeWah") is Chloe's best little friend (she is almost 18 months old). Dena fed Chloe and her boys even asked Chloe to teach them some sign. I don't know what I would do without Dena. She's a good listener, a great friend and a wonderful example of a devoted mother.

Anyway...back to Shay.

Two Choices

What would you do...you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice? At a fundraising dinner for a school that serves children with learning disabilities, the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: ' When not interfered with by outside influences, everything nature does, is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where it the natural order of things in my son? The audience was stilled by the query. The father continued. 'I believe that when a child like Shay, who was mentally and physically disabled comes into the world, an opportunity to realize true human nature presents itself, and it comes in the way other people treat that child.' Then he told the following story:

Shay and I had walked past a park where some boys Shay knew were playing baseball. Shay asked, 'Do you think they'll let me play?' I knew that most of the boys would not want someone like Shay on their team, but as a father I also understood that if my son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps. I approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, 'We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning.' Shay struggled o ver to the team's bench and, with a broad smile, put on a team shirt. I watched with a small tear in my eye and warmth in my heart. The boys saw my joy at my son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as I waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat. At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn't even know how to hold the bat properly, much less connect with the ball. However, as Shay stepped up to the Plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.

The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.

Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the stands and both teams started yelling, 'Shay, run to first! Run to first!' Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled. Everyone yelled, 'Run to second, run to second!' Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball. The smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home. All were screaming, 'Shay, Shay, Shay, all the Way Shay' Shay reached third base because the opposing shortstop ran to help him by turning him in the direction of third base, and shouted, 'Run to third! Shay, run to third!' As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, 'Shay, run home! Run home!' Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team. 'That day', said the father softly with tears now rolling down his face, 'the boys from both teams helped bring a piece of true love and humanity into this world'. Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making me so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

Sweet Home Alabama errrr Colorado

We were actually considering a move to Alabama. I know - I cannot believe it either. That said, do you realize I built a snowman in October and could have built another one in May? That means that there are four months of the year in which I couldn't build a snowman. That would be great if snowman building were my passion, however, it's not. I like swimming & water skiing and camping. Joe & Quinn bought these seed starter kits. You plant the seeds in the house and then when they get to a certain height, you plant them outside in the ground. Like any normal person, we began this a few weeks ago. Now the plants (especially the beans) are about 2 feet tall. They have one stalk each and they are flopping over. The dirt in the little containers is getting moldy and I am guessing if we don't plant them outside very soon, they will die before we get them in the ground outside. I guess we could put them outside and then let them die of natural causes (freezing) rather than killing them slowly while waiting for spring.

My friend, Laurel and I were having a garage sale this weekend. I was hanging up the signs in 27 degree weather! Yes - 27 degrees. I sat in my garage freezing my buns off with a winter coat on while the die hard garage salers trickled in. That very same day, my mom told me it was 80 degrees in Alabama.

We had begun to look at houses on the Internet. Though prices aren't what they once were in AL, you can still get a pretty nice house for a reasonable amount of money. Some of them have pools in the yard. My dad often reminds me that I said I wasn't going to have kids, I was going to have a swimming pool (he always followed it up by saying "that's going to be hard to pass - as in delivery"). Anyway, we could then venture out into lake properties. AL actually has many beautiful lakes (CO has reservoirs filled with snow-melt). AL always struck me as sort of a "nothing" state. I mean, who says, "Hey let's plan a family trip to Alabama"? I cannot think of anyone. On the other hand, we had tons of visitors when we were in CA & CO is a nice tourist (guest) state too. CT probably was but we weren't there long enough to find out plus I was busy with a new job, having a baby & dealing with post-partum depression. No one would really have wanted to visit (at least not if they were smart). Anyway, back to AL. It's actually got some very pretty areas & some nice qualities. The most important being my parents & my Aunt & Uncle & cousins. I think that my mom would be such a big help. I may be delusional because some of my friends have parents that help all of the time. They take the kids to plays & out to lunch, etc. They pick them up from school and help out when they are sick. The mom & dad actually go on dates!! Then...I have other friends who complain because their parents live close by but don't seem to care too much about seeing the kids & are so busy that they don't help out as much as the kids would like/need.

Well, none of this really matters because last week I called the organization that provides services for disabled children in other states. The woman has three disabled children of her own. She was adamant about our family staying in Colorado. She said she would trade us places in a heart beat. She is under the impression that CO & FL have the best services around. She said AL services are terrible. you have to fight for everything, Chloe would likely go uninsured unless we had group health as Medicaid doesn't help too many kids there, the schools are horrible, etc. She went on and on and on. If she didn't have three kids of her own - I might have disregarded what she said but she seemed to know the innerworkings of the system. I am going to have to talk to at least a couple more people but my first impression is that we will be building snowmen 8 months out of the year. The schools have always worried me but now I cannot imagine going from CO to AL & losing services for Coco. Things have gone so smoothly for us in terms of getting the therapies we need. That said, how do you weigh services vs. family? I am sure my friends with disabled children probably weigh them differently than the average family might. It's a whole new world when you have to consider "Can my daughter get medicaid if I move?" or "What if she cannot get enough schooling or the therapies she needs?"

On a side note (I probably mentioned this in an earlier blog), it is still a little hard for me to accept that Chloe has Medicaid. I always thought Medicaid was for the poor, people who couldn't afford to get insurance or didn't work. Geez, we work our butts off & our child is on Medicaid. I think mentioned that we cannot get insurance for Chloe because we are self-employed. Before they knew what was wrong with Chloe (especially before they knew), no company would insure Chloe. Given our rates without her, we wouldn't be able to afford insurance even in they said they would insure her. Thank God she qualified for Medicaid. I don't mind paying my taxes nearly as much as I used to!

Better to laugh than to cry!!

It has taken me a few days to find the humor in last week Wednesday. I think my life might be out of control - what do you think?
Joe took Chloe to school. Quinn and I were supposed to take Mitzie to the groomer. My friend, Laurel was relying on me to watch her two boys for the day. Sometimes things don't go the way we plan...
I was about to leave for the groomer when the phone rang. It was the credit card company with whom we have a 0% interest rate to pay for the vending machine business we bought (part of our "get rich slow & painfully scheme"). We owe about $10,000 and we have to pay $159 per month. At any rate, somehow I shorted them $31 on my last payment. My payments would now go from $159 to $440 due to the jump in interest rate to 29%!!! The lady on the phone was so kind as to waive the $39 finance charge. She also told me to call the next day after my $31 payment posted to see if maybe they would bring my payments back down since this was my first incident.
We raced out of the door to the groomer where we arrived 20 minutes late. The groomer said, "Mitzie is very late and you will have to reschedule." With Mitz in tow, we headed in to buy her some dog food only to find they didn't have her kind in the size we needed. As we were about to leave Petco, my phone rang. It was Chloe's teacher. Chloe didn't seem to be feeling well and I needed to come & get her.
I called Laurel & she found someone else to watch her little guy (Alex) and we would meet at McDonald's so I could pick up Joey since Laurel was now going to be late for work because of me.
I started toward the preschool, missed my exit and took the long way. We finally arrived and Chloe was on her way to recess. She was SO SAD that she had to come with Quinn and I vs. going "si" (outside) with her friends.
The afternoon went pretty well except that Chloe wouldn't take a nap - a time that I rely heavily upon for my own sanity. I used to feel guilty about this but I decided that I was a better mom when I had those 1.5 hours to myself.
That evening, I picked up the phone to call my mom only to find that our long distance had been cut off due to lack of payment! OMG (that Oh My Gosh in blog language). I added a fax line a few months ago but I failed to change my automatic bill pay. Since I have automatic bill pay, I don't open the phone bills, I just shred them (doesn't this sound like an attempt to simplify my life?). Well, each month I owed the company about $40 more than I was paying. I had received a notice about this the Saturday before we left for TX. The phone company isn't open on weekends so I assured myself I would call from TX on Monday morning. Does that sound as funny to you as it does to me at this point?
My formal dining room table is covered in Hotwheels Tracks. My formal living room is a playroom & Chloe is now in the "let's pull all of the books off the shelves" phase of her life. Why do these have to be the first two rooms when you walk into the front door of my house? We have an awesome, really big playroom in the basement. I don't think the kids would even miss it if we walled it off...it is much more fun to be in the thick of things upstairs.
One final note. I was so excited to have bought a book about getting organized. It was written by the guy from HGTV who goes into homes & organizes them (we don't get HGTV but this info. was on the cover of the book). I read the first two chapters and I was feeling very empowered & enthusiastic about getting organized. I lost the book.

The Real Cunningham Family

Photos: Quinn not getting his way; Quinn's pretend angry face; the Queen of Bed Head (no enhancements necessary); Amy posing for another photo by Quinn

I have gotten a lot of comments about how cute Coco looked in all of the photos. Believe me, you didn't get the first photo I took each day :). I thought I would clue you in on what we really look like on any given day.

School - 4 days per Week

Another good news - bad news day. Chloe was so excited to go to school today. She hadn't been there in two weeks! She kept saying "coo", "coo" all morning. She uses her sign with the "coo" so we know she means school. When Joe dropped her off, they told him that she would be starting 4 days per week next week!!! It was so much easier than I thought. Chloe will love it and hopefully she will continue to make progress.

Bad news...they called me to come and get her about 30 minutes after she arrived. Apparently she was pulling on her ear & very fussy. Off to the doctor this afternoon.

Quinn has a friend over and they were all downstairs. I asked if they were being nice to Chloe & they replied, "yeah, really nice. We aren't even shooting her or anything." I guess, in 4.5 yo talk, that is a very good thing.

I have included a picture of Chloe at the airport. I wanted you to see how flexible she is. Check out how she has her legs intertwined.

It Takes a Village!!!

Sometimes I surprise myself - using a quote from a Clinton. Let's just pretend someone else said it because it is actually true!

While we were in Texas my friends helped so much. Two of the days I was gone, my friend Amy had Quinn. Quinn & Peyton had a great time. My friend Laurel kept Quinn until 7:30pm one evening. Joey & Quinn weren't ready to part when Joe came around 5:00pm. That said, we were once again finishing up our taxes and Joe took this as an opportunity to find the post office that would postmark them for April 15 :).

Despite the fact that I am back, the village continues t0 help me raise my children! Chloe had therapy at 9:00 and 10:30am yesterday. Quinn had school & karate until 12:15pm. He had to be at speech by 1:00pm. So...I had to take Chloe to Dena's house to eat lunch & take her nap. As a result, I was running late to get Quinn from school so I called Laurel & she stayed at school with Quinn until I got there. I rushed back to Dena's to get Chloe because I had to get to sign language by 3:30pm (so I thought). I got to my friend Patsy's house (sign language is held there) and no one but Patsy & her kids were there. I asked where everyone was and she reminded me that sign language doesn't start til 4:30pm. I am quite sure I have lost my mind. It was nice talking to Patsy for a few minutes though.

What a day!