Friday, December 18, 2009

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The Waiting Room - Our Little Community

In the waiting room, at pediatric therapy, I am known as Faith's mom. Just as others are known as Ashley's grandma, Luke's grandma, Chloe's mom, Abby's caretaker. At first, we were just a familiar face to one another. But as our children and grandchildren came for therapy more and more, we began to talk. We compared stories. We asked each other questions. Our waiting time has now become social hour. We have become our own little community - supporting one another, offering prayers and talking to those who know exactly what we go through.

It's not just the parents, grandparents and caretakers who share a special connection with one another. It's also the three receptionists who sit behind the desks. Some children, like Faith, have been going to therapy for years. They know our backgrounds, they know when we aren't feeling well and most of all they know and understand our children. They laugh at the children's stories and they cry too when one of the young patients is in the backroom getting Botox injections.

We can tell when there is a visitor amongst us. First-time families whose children need physical, occupational or speech therapy. They tend to look a little longer at a child in a wheelchair, puzzle over what is going on during an enteral feeding, wonder why some children make silly sounding noises in order to communicate. The rest of us look and smile, trying to make them feel welcome. We understand their worries, their fears, their anxiousness.

For some of those in our little community, mere socialization turns into friendship. We call one another, send each other Christmas cards, give new babies in the family gifts and set up play dates for the kids. We are our own little community and it helps us get through the life of having a special needs child a little easier and a little less overwhelming.

Tuesday, December 8, 2009

Lots of Rest - the Best Medicine

We had a small miracle occur in our household last night. Faith slept in her own bed until 6:30 in the morning. She woke up and I got her back to bed and she slept another couple of hours before I had to wake her for school. This morning I felt so well-rested that I didn't feel the need to sleep while Faith attended school. Last week, that's exactly what I did.

After seeing another doctor, actually a cardiologist, I found out my O2 saturation was down to 87% and I had pneumonitis. I was having major shortness of breath so I was concerned there was something going on with my heart. He told me to finish my antibiotics and get lots of rest. He also said it wouldn't be a good idea to walk Faith to school and back home. Thankfully, we were able to get someone from respite care to bring her to school and back. And while she was in school, I slept. On Friday Faith stayed home from school because she was coming down with a cold but we had respite care from 1-5 p.m. - I slept most of that time. We also had respite care for an overnight and even though I had a four hour nap, I was still able to sleep most of the night.

After all of my rest, I was finally feeling better over the weekend and I even felt like I had more energy. Unfortunately though, at my doctor's appointment on Monday, my O2 sat. was still below 90% and she could still hear "crud" in my lungs. She put me on another round of antibiotics and also tested my thyroid, iron and checked for mono.

I was a little discouraged after the appointment. I miss taking my daughter to school and chatting with her teacher's aid and the other moms of half-time kindergarten students. I am also just tired of not feeling well. Today, however, I didn't want Faith to miss another therapy appointment so I did get her there and it went well, despite the cold weather.

So while the apartment continues to not get cleaned, paper piles up waiting to get filed and respite care takes over bringing Faith to school, I will continue to rest. I will also continue to pray that Faith will have more nights of good sleep. It really is the best medicine.

Monday, November 30, 2009

No Fun Being Sick Mom

Thankfully, during these past six years it has been very rare that I've been too sick to look after Faith. But these past couple of weeks, though I have still been able to look after her - with the help of dad and respite care - it has been a challenge.

It all started with a cough then my sinuses began to ache. After being diagnosed with a sinus infection I was put on antibiotics. I asked the doctor for something for my cough and he was going to prescribe some cough syrup that would knock me out as well as soothe my cough. I told him I didn't want that because I needed to be up at night with my daughter. So he prescribed these little pearl-like pills. Needless to say, they did not do the trick and I am still coughing.

The hardest thing through this whole ordeal has been the lack of appetite and not having a lot of energy. It really did take all I could muster to walk Faith to school and back, after which I would go into a coughing frenzy, sometimes to the point of dry-heaving. Thankfully, I had a four-day reprieve of taking her to school over the Thanksgiving holiday. Speaking of which all we ended up doing was going out to eat at Perkins. I was too sick for us to go anywhere and wanted to go eat at a place I could bring my leftovers home. Faith had lots of fun eating her mammoth muffin.

As a family, we all took it easy over the holiday and played lots of PlayStation, which Faith and her dad especially enjoy. I was able to muster up some energy to meet some of my family at Ruby Tuesday and to put up some Christmas decorations. Faith was so excited to go to school today and I'm afraid part of that is due to her being bored at home. Hopefully this virus is near the end and I can regain my energy for hers and my sake.

Monday, November 2, 2009

God Works Out the Details

I opened it with curiosity. Faith's name along with our address were on the outside of the envelope with a first name scrawled in the left-hand corner. I smiled as I read the contents. It was Faith's first invitation to a party. As I looked at the time and date of the party I felt almost relieved that we would have a good excuse for Faith not to attend. The Halloween party was scheduled for October 25th - the same day Faith would be having her birthday party.

Sure I was excited about Faith being invited to a party by one of her classmates. But it also caused a little anxiety wondering how the details were going to be worked out. How handicapped accessible was their home? If there were going to be lots of kids attending, how would Faith handle all the noise? Was the Halloween party going to be too scary for her? Well, not to worry because Faith wouldn't be going anyway.

A few days later, before I had gotten a chance to call Faith's classmate's mother to tell her she would not be attending the party, I received a voice mail message. It was a very scratchy-voiced mother saying they had been sick so they were moving the party to October 31. She also relayed that she would be serving the kids lunch and making special treat baskets so she wanted to know if there was anything special she could make for Faith.

Hmmmm. It sounded to me like this mother was trying to be sensitive to Faith's special needs. I was happy she had called and now Rob and I were determined to get Faith to the party. But there were still questions I had, so I called. No, their home wasn't handicapped accessible but there were only four or five steps and everything was going to be held on the main floor. I was more than welcome to stay with Faith if that would be best.

Although I had been relieved of some of my anxiety, there were still other thoughts rolling through my mind. How nice was their house? What if the wheels on Faith's chair makes a mess? What if the other kids ignored Faith? Was I going to have anything in common with the other moms and helpers there? And since Rob was going to be dropping us off at the party (to help get the chair upstairs) I was going to need to all Rob for a ride back home. How dumb would that look that I didn't even have my own cell phone?

The night before I prayed as I always do when I am feeling anxious. I prayed that the Lord would work out all of the details in advance. I prayed that He would help me have confidence in this new situation. I prayed that most of all, Faith would enjoy herself.

As Rob helped Faith and I up the steps and into the house, a calming peace came over me. The other kids were happy to see her. As she sat in her chair and took in all that was going on around her, I noticed the kids were all on the living room floor playing with toys. I took her out of her chair and sat with her on the floor so she could be a part of the group. There were some party assistants who were curious about Faith and asked questions. At lunch time I gave Faith little pieces of chips and hot dog while I finished off the rest for her. After lunch and more playtime, it was time to go out to the garage and go through the scary haunted house. Since there were steps leading to the garage, I simply carried Faith down and we watched. I thought she would be scared due to all the kids screaming and running around but she was fine. Soon we were running through the house with all the other kids and she joined in on the screaming and laughing.

When it was time to go, Faith's classmate's mom had little baskets for the kids which included lots of candy and other treats. Faith however, received a special-made basket just for her - one with pudding cups and Cheetos - a few of her favorites.

It was a wonderful time and I was so thankful the Lord gave me the confidence and peace that I had prayed for. Not only did He answer my prayers, one of the other moms gave me her phone number and invited me to a Mom's Bible Study at her church. Too bad I didn't pray for Faith having to leave the party. She cried all the way home because she wanted to stay!

Monday, October 26, 2009

Birthday Full of Love

Faith turned six years old yesterday. And to celebrate how far she's come in those six years, we decided to have a not-so-little celebration. There were lots of guests, lots of gifts, lots of cupcakes and most of all, lots of love. We are amazed at how many lives our daughter touches in a special way. She receives so much love and generates it back to those around her. Her smile brightens people's day, her laugh makes people laugh along with her, her joy is contagious. My husband and I are so thankful for the gift of her life - a life that He entrusted us to care for since the day she was born on October 25, 2003.

We knew there would be challenges. We knew there would be tears. We knew there would be exhaustion. We didn't know, though, how much joy there would be. And yesterday, seeing Faith surrounded by friends - children and adults alike - family and even a few people in our building who don't know her all that well, brought gladness to our hearts.
It was so wonderful to have people take time out of their day to say Happy Birthday to Faith. And at the end of the day when the cupcakes were eaten, the balloons deflated and gifts put away, the thing that Faith remembered most about her day was that so many people love her so much.