Bloggy Moms

Wednesday, June 29, 2016

My Daughter: The Compliment Queen

The other day I was watching the TV show "America's Got Talent." They are in the auditions phase so there are really good acts and ones that are not as good. One that the producers chose to highlight was of a man who gives out compliments. That's his shtick so to speak. Unfortunately, he will not be making it to the next round. The judges were not impressed.
As I watched his act, I couldn't help but to think of my daughter. I affectionately call her The Compliment Queen. She feels it is her civic duty to compliment small children and ladies.
When she was around five or six, I tried to curb this a bit by saying, "It's OK if you don't compliment everyone." Her response was, " But mom how will they know their (purse, doll, dog etc.) is amazing if I don't tell them?" I was dumbfounded, and still am today, as to how to answer that question. Instead, I keep close tabs on her. I've also given her a few rules.  One of these is that she make sure it is alright with me before approaching the  intended recipient of her compliment.
My whole week was made yesterday when she made a little girl's day. We were finishing up eating at a fast food restaurant, when a young family arrived. I noticed that their daughter had a disability, but I wasn't certain if my daughter had. Still, I wondered what compliment she was ready to hand out. I could tell that she wanted to engage this family in a conversation, however, they were at the drink station filling up their drink cups. My daughter glanced at me before going over to them. I explained that it wasn't the right time. Thankfully, she complied and finished her own taco. Soon it was time for us to leave. I'd completely forgotten about this young family. My daughter, on the other hand, had not. After throwing her trash away, she slipped over to them and declared, "Excuse me, I just wanted to tell you that you are rocking those hearing aids." That phrase was music to my ears. I think the family was a little shocked that my daughter, who looks perfectly normal, would say something so kind. What they didn't know is that my child has her own disabilities that are often invisible to most people.
As we exited the restaurant, I made sure to give my Compliment Queen her very own compliment for brightening that family's day.
One day my daughter may not give as many compliments as she does now. That will be a sad day in my book. In the meantime, I will appreciate and applaud her efforts. May there be more humans in the world like her and the Compliment Man.

Tuesday, June 28, 2016

I Think My Get Along Button is Broken Too, But That's OK

Being the parent of a child with complex needs is hard work. It is often draining and exhausting. I am like most humans on this earth, I crave social interactions. I desire to have meaningful relationships. I, like my daughter with autism and bipolar disorder, want to have friends who understand me. I have known for years that my daughter's "get along button is broken." She can make friends just fine. Keeping and maintaining those friendships, however, is difficult for her.

I'm discovering that I am more like her than I want to admit. In the past year, two of my very closest friendships have ended. I wish I knew what to do differently. Some of it, most of it, is beyond my control. Since my daughter has more needs than her typically developing peers, we have to miss out on many events where I can foster those friendships. Just this spring a dear friend of mine invited me to her son's play. We bought the tickets and looked forward to going. The morning of this event was a difficult morning for my girl, so I contacted that friend and we stayed home. My friend was gracious and understanding. From her viewpoint, that was no fun as I am sure she really wanted to see us. She was a proud mom and wanted us to celebrate her child's success with her. Then in April my daughter had a brain tumor that required my full attention for several weeks. I had to miss out on being a support to another friend who had foot surgery. I wanted so badly to be able to cook for her and take her to doctor's appointments. It never happened. For that I am sad. Still another friend had to go out of state to attend to her extended family. I really wanted to help her pack or bring her a care package. That didn't happen either. I am failing my friends.

 I'm not failing my daughter, though. Often I am on the phone, attending doctor's appointments, emailing my child's teacher or figuring out insurance snafus. When my child is home, I cannot leave her unattended. Although she loves people, peopling can be exhausting for her so we adjust to her schedule and her needs.

I have been told that my focus is too narrow. I only talk about my kid. I have become something that I never wanted to be; one of those parents who talk incessantly about their children. It has become ad nauseam.

Here's the thing though: If your child had cancer, wouldn't you do everything in your power to save them? Wouldn't you stop at nothing to find a cure? This little being who I love with every fiber of my being is depending on me to help her.

If I abandon her so that I can nurture my friendships, then I am a failure as a mother.  I am sorry that I cannot be the kind of friend that my friends need me to be. I'm not sorry that getting my daughter launched for life, leaves little time for anything else.

Society will pay for the alternative. If I don't step up and become a warrior mom, my daughter will look elsewhere to get help. She could very easily end up as a pregnant teen or a drug addict. She could even end up committing suicide. My due diligence is to raise her up to be a productive member of society not one who is a detriment to it. Unfortunately, this requires more of me than the average mom.

I'm not going to stop trying to be a good friend. I just might not be able to be the kind of friend my friend wish I was.

If you are a friend to a mom of a special needs child, please know that she is grateful for your friendship even if she has trouble showing you that. She may never be able to reciprocate that friendship equally. Thanks for understanding that and for loving her in spite of this.

One thing that I have learned from my daughter after all of her failed friendships is to never give up. There might be someone just around the corner who I have just not met yet.

Wednesday, June 8, 2016

To the Hospital Staff Who Performed Miracles of Kindness

In  late April of 2016 my daughter underwent emergency brain surgery for the removal of a brain tumor. This story is about all of the incredible people at CHOC Children's Hospital who helped my daughter, and our family, survive that scary time.
When I first learned  that an MRI  detected a mass on my daughter's brain, I was in shock and disbelief. I literally felt that all of the air in my body had just left me. The nurse practitioner who was delivering the news of the brain tumor was so compassionate. At a time when I felt so bad for not noticing all of the warning signs earlier, this medical professional said, "You did a good thing Mom. Many parents would not have taken her to the doctor when you did." She really lifted my spirits and gave me the courage to make all of the twenty million phone calls to family in friends over the next few hours.
Less than an hour after my conversation with the hospital's nurse practitioner, I was told that the neurosurgeon wanted to see me. My husband was at work that day so I talked to him by myself with no support. He was kind, gentle and compassionate as he explained where the mass was and what our next steps were. I honestly did not expect him to be telling me that he and his team would be removing part of my daughter's skull in order to operate on her brain the very next morning. He exuded so much confidence as he described everything in detail. This kind soul did everything he promised he would and then even a bit more. My daughter was in the hospital eight days. He saw her every single one of those days. One day in particular stands out. It was a Sunday. I know from past experience that many doctors don't see their patients on Sundays so it came as no surprise when my daughter's neurosurgeon, Dr. McMiracle, sent one of his partners to check on my girl. This doctor was a bit concerned with how my daughter was progressing.  He felt she might require a CT scan or another MRI. He left my child's bedside in order to call Dr. McMiracle. In less than 30 minutes, this wonderful doctor appeared before our very eyes. He double checked on his star patient, but ultimately declared that she was doing just fine. Our family is grateful that this doctor truly cares about his patients and goes the extra mile.
Another group looking out for my daughter was a team of certified nursing assistants (CNA's) assigned to care for her during the first few critical days following her surgery. These "sitters' stayed in her room and attended to her as if she was their own child.
 The first CNA who was assigned was not a good fit for my daughter. She did not know how to calm a frightened child and only added to my child's confusion. Thankfully, she was only with us for a few short hours on her first day post surgery. The next CNA was completely the opposite. She had experience working with children with autism. She knew exactly what to say and do to help her. She established protocol that all of the CNA's who followed her kept. It was so cute to hear each CNA tell the next CNA how things were done. Little tips and tricks that seemed to make caring for my child's unique needs a little easier.
My daughter on the road to recovery

One of the last CNA's came in my daughter's room like a bull in a China shop. She started cussing, but quickly realized where she was and stopped. I almost found the charge nurse to ask that this CNA be reassigned to another patient. Something told me to give this young lady another chance. I'm so glad that I did. Before her arrival my daughter had been having trouble finding the right words to communicate. It appeared that she had some speech delays after her surgery that may have been due to swelling on the brain. My husband and I had been told that a speech evaluation would be given to her the next morning. When they did come the following morning, my daughter was a different child. It turned out that in the middle of the night when my daughter was having trouble sleeping, the young CNA asked my daughter questions and sang tunes from "Frozen" with her. Overnight she had a language explosion. It was miracle. I'm so thankful that I decided to give this young, insightful CNA another chance.
Still another CNA took it upon herself to get my daughter up and moving. She was able to get her to walk down to the play room. Later on she took her out for some fresh air, her first in a week. I believe she was also instrumental in getting my daughter to actually eat something. Granted it didn't stay down, but it was a start.
My daughter has been home just over a month now. She's made remarkable progress in walking and talking during this time. She has built upon the efforts of the hospital staff. My family and I are grateful for the care that she received while she was a patient at CHOC Children's Hospital. So many of the staff there really went above and beyond the call of duty. We are indebted to them.

The first wheelchair my daughter used. I have a similar one in the trunk of my car that sits mostly unused now.