a new kind of happy

when little things hurt big

2011-06-16T18:31:00.000-07:00

Yesterday I put together a new special order high chair for Stella. I was so excited! In my opinion it was expensive, but I was able to get grant money for it and it was really cool; modern even. (maybe even “typical” looking!!) And although I felt it was over priced, it was supposed to serve our need for a long time! It was going to be a good investment!! But when all the pieces finally came together and we tried it out, it didn’t work at all. It was insufficient for her needs. I was angry. I was disappointed. I felt deceived.

Today I was sad…. all day. I cried a lot! If you had seen me, you probably would have thought something really tragic happened. Nothing really tragic happened. But what did happen was I came to realize that this chair fiasco marks the end of an era for us. No longer will cute baby equipment work for us. No longer can I choose furniture, strollers or high chairs based on style or price. From this point forward, we will have to buy items based on function alone and those items will be big, bulky, ugly, complicated, and extremely expensive! It’s depressing.

Maybe it isn’t just the chair that has had me in tears. Maybe all the emotions of her upcoming surgery, and my past emotional damages and disappointments that I usually hide so well have just come bubbling to the surface. It happens sometimes.

UPS will come tomorrow to get the chair and I’ll start all over…. I’ll start over with a new sense of “normal” and a more realistic idea of what our needs are. And by the time that I figure out what type of equipment will work, and I work out a way to fund it, I’ll be excited and grateful to be receiving that big, bulky, ugly, complicated and expensive chair. But for now…. It still hurts.

When Tuesday feels like Monday!

2010-09-07T05:02:00.000-07:00

While my oldest and youngest spent the majority of the holiday weekend at friends houses, Stella and I chilled at the house, and I did a lot of reading! I spent a lot of time reading *Single Dad / Disabled Daughter*. It was there that I read about wheel chair issues that he has had to deal with.

We have wheel chair issues too! Apparently the company that sold us Stella’s chair is supposed to maintain it too? News to me!! I guess I need to get on the phone today and try to get something done about all the stuff that is literally FALLING off her chair (like the brakes!)

Anyway… it wasn’t an exciting weekend for me, or for Stella. The highlight for us was dinner at our dear friend's home Monday evening. But, Emily and AJ had a fabulous and busy weekend (without me)!!

St. Simon's Retreat 2010

2010-09-04T11:13:00.000-07:00

"Just as the wave cannot exist for itself, but is ever a part of the heaving surface of the ocean, so must I never live my life for itself, but always in the experience which is going on around me."

- Albert Schweitzer

This summer we had the great privilege of joining the Developmental Disabilities Ministry for a retreat at St. Simon’s island. I have never before participated in any kind of retreat, let alone a special needs retreat, so I felt a little apprehensive about the 6 hour drive to get there. I wasn’t sure if it would be worth the ride. Boy was I wrong!!

The retreat was to start Friday evening and end around lunch time on Sunday. I felt that there wasn’t going to be enough time to make it feel like a “real vacation” so I made arrangements for us to leave early, and stay late. I’m SO glad I did because we had plenty of time to do some sight seeing on the way there and on the way home.

Thursday: left at 4 am! Arrived in Savannah at 10 am. We were just in time for the first tour of the day at Juliette Gordon Lowe's home. I planned all along to make this detour, but Emily had no idea why I packed her Girl Scout vest until we were there! It was a great surprise!

After the tour, we went for a short walk through the historic district. The heat and humidity were intense though so we didn't stay in Savannah for very long!

Thursday Afternoon: We arrived in Brunswick around 2 pm, and since we couldn’t check into our hotel until 4pm, we continued on to St Simon's island. We went straight to the beach!! I thought we would just walk around a bit and then head back to the hotel. The kids had a different idea!

We stayed for several hours and then headed back to the hotel in soaking wet and sandy clothes!

Thursday Night: The hotel isn't grand, but decent for the price and has a great little pool. That made the kids feel a little better about having to leave the beach!

Friday: We left the hotel at check out time, and headed back to St Simon's Island. We went to a little water park at the base of the lighthouse. We had a great time there! My only regret was not getting there early enough because the time flew right by and the kids wanted to stay longer!! (I did too!!)

Friday evening: Time to check in at the retreat location! We had just enough time to get cleaned up before heading to dinner. The DDM was so kind as to make sure the AC was on in our room when we arrived, and they left us gifts in our room!!

After dinner all the kids went to one place, and all the parents went to another for the first parent session. It was all very exciting to find out what the next two days had in store for us!

Saturday: Breakfast 7 am! The parent sessions started soon after. My kids were excited to go back to the kids building since they had such a great time there on Friday night! The parent session was equally as wonderful!

Saturday afternoon: The DDM gave us a large break so we could go sightseeing. Since my oldest and youngest really wanted to climb the lighthouse stairs, some of the DDM ladies offered to keep Stella for me since the lighthouse is not handicap accessible.

Saturday night: We had a lovely dinner with the group and then we had more parent sessions. My kids were again thrilled to go with the other kids. The kids were all together regardless of age or ability and the volunteers did a great job with making the kids sessions fun for every one!

Sunday morning: Our last morning with the group, and I wasn't ready to say good bye to every one! We had a lovely private church service with the DDM, and then we had a nice lunch before saying our farewells.

We were not ready to leave, so I decided to check back into the hotel we had been staying at with the DDM. After the DDM farewells, we went to Jekyll Island. Our first stop was the The Georgia Sea Turtle Center. We stayed there for several hours, and Emily earned a girl scout patch!

We then went to the Jekyll Island beach and stayed until dusk. There were a lot of sea creatures and dead fish. We all loved being there.

Monday Morning: We still weren't ready to go home and my youngest and oldest promised to turn over their life savings (what ever they had in their piggy banks!) if we could "just stay one more night". So, we stayed! We went back to the beach at St. Simon's Island, and we ran into another DDM family there!! There was also a beach awareness day (or something like that). The kids enjoyed looking at the displays the DNR, 4-H, and The Georgia Turtle Center had set up.

We had lunch at the van. Peanut butter and Jelly sandwiches. I forgot to say earlier that I packed several days worth of food and drinks, so when we were not eating with the DDM we ate groceries from home. We saved a TON of money by not eating at restaurants!!

We went back to our original hotel in Brunswick and I negotiated a lower rate for a better room!! And get this.... they put us right next door to the other DDM family!! It was fabulous luck!! We went out to dinner with them, and our kids got to play together at the pool.

Tuesday morning: Time to go home, right? Nope! One more thing to do before we leave for home! We had to go find the Tree Spirits. This took a couple hours. We got a lot of help from the locals and sadly most of the tree spirits are now gone. The ones we did find were very cool though!!

Tuesday afternoon: We finally packed up the van for the last time and headed to the highway. We were finally heading home! We weren’t on the highway very long before I decided to take a detour! I followed hand made signs to “The Smallest Church in America”!

After we left The Smallest Church in America, the rest of our trip home was fairly uneventful.

I took over a thousand pictures during our trip, and the memories will last forever. I dare say, this was the most inspirational, and empowering thing that I have ever done. I can not thank the DDM and Jacque Daniel enough for making this trip happen for us!! -There is talk of possibly having the retreat at Callaway Gardens next year, and although the practicality of Callaway is appealing, my kids and I secretly hope to go back to the beach again.

We're all in the same boat... or are we?

2010-09-04T07:29:00.000-07:00

"I am not afraid of storms: For I am learning how to sail my ship." -Eleanoor Roosevelt

One of the most commonly used statements I’ve heard is, “we’re all in the same boat!”. Really? Are you sure? Cause from where I’m bobbing around in this vast ocean, YOUR boat looks bigger than mine! (or smaller!) I often think about our proverbial boats, and after the St. Simon Retreat, I’ve thought even more about the size of “my boat”.

When I left the hospital with my brand new special needs baby, the hospital gave me a life preserver! There was no boat waiting at the dock to take me to some lovely island where I could safely plant my feet on terra firma! No! I bobbed around with my tiny life preserver trying to hold up my whole family while facing violently crashing waves! I stayed that way for a couple years. Then one day I had a life line thrown to me by a Special Needs private school. I imagine their boat as a luxury yacht! Not too big, but with plenty of amenities! I knew that I had it good while my boat was tied to theirs, but I didn’t realize how good I had it until they “graduated” my child. They tried to warn me that the waters were still very rough out there, and instead of sending us on our way with a life preserver, we left in a dinghy!

For about a year after leaving the Special Needs school, I was barely able to keep my boat afloat! I constantly was patching holes, and I didn’t really have any crew mates to help me with maintenance. When my parents passed away, my boat nearly sank completely! But then I ran into another mom from the Special Needs school. She threw me a line and offered some resources that I wasn’t previously aware of. Then another mom helped me… and yet another… and each time I tied my dinghy to their boats, my boat became bigger and more stable!

I’ve now tied my boat to three much larger boats and several small boats! Avita, Connect-ability/sidekicks, and the DDM are my big stabilizers right now! But the other little boats tied off to mine are tremendously helpful too! Now when the waters get too rough for my little boat, I can climb into their boats to weather the storm!

No matter how big or small your boat is, we need you! If we can all tie our boats together, we’ll soon have an ocean liner filled with lifeboats! How wonderful would that be! If you are still floating around with a life preserver, please leave me a comment. I’m happy to have you join me in my boat!

photo credit: Dan, Free Digital Photos