Tuesday, August 2, 2016

5 Ways I am Messing Up as a Parent

Parenting advice is easy to find. You don't even have to look for it sometimes; it finds you.

With my daughter, I have always felt the amount of advice we have gotten was quadruple the norm. Part of that is because there are simply more professionals involved in her care. She sees a genetics team, GI doctor, Pulmonologist, Cardiologist, ENT, ophthalmologist, and audiologist. She has also a team of therapists and teachers at her school.

Many appointments with professionals over the years have resulted in some advice and recommendations. Of course, part of their job is to provide guidance and educate me in how to best help Jaycee, but sometimes I just can't do everything they ask. When you have a child who has many developmental and medical needs, life becomes a balancing act. For this reason, I can't follow every rule and piece of advice I am given.

These are just 5 areas I mess up as a parent.

1. I give my child juice.  Insert screams from the medical community... Doctor after doctor and the dentist have all lectured me on the incredible dangers of juice. I have been told to dilute juice if I do give it to Jaycee. Yes, I do dilute it sometimes but who dilutes juice for their 10 year old? She rarely has soda after all. But, I do have a feeling of guilt every time I pour her a glass now. The guilt is helpful.

2. My child watches way too much television. Jaycee lacks independent play skills. Occasionally, she will briefly play with her brother. But she rarely plays on her own. We have surrounded her with books, dolls, puzzles, play-doh, and everything in between. Still, if we shut off her devices, she generally just stares into space or follows me around the house. Her interest in movies has been a blessing when she's doing her twice daily nebulizer and vest therapy treatments. It also comes in handy when she's sick and confined to a bed for days. But, I do let her watch way too much tv. Go ahead and shake your head at me- I deserve it.

3. My child sleeps with stuffed animals. (Gasp!) Some of you may wonder why that is a problem. Well, let me tell you. Jaycee has asthma. It is advised that you not allow stuffed animals in the bed when sleeping because of dust mites. I follow many asthma protocols. Our house windows are shut 363 out of the 365 days a year because fresh air is filled with scary pollen, dust, and other allergens that could infiltrate our home. We rarely if ever have fresh flowers in our house for the same reason. We are neurotic about keeping Jaycee away from smoke. No one in our family smokes cigarettes but the dangers of smoke can come from bonfires, charcoal grills, or a neighbor burning leaves/shrub. These are just of a few of the things we do to help prevent her asthma from flaring up. With all of her diagnoses, we have dozens and dozens of guidelines to follow. Some things have to give. Stuffed animals and dolls in the bed are one of them. She wants these friends in her bed, and I am not going to deprive her of that too.

4. My child is overweight. Prepare your lecture; I have heard it before. I don't like my child being overweight; I don't like that I am overweight. I hate it actually. A few of Jaycee's doctors scrutinize how much weight Jaycee has gained between each visit. I understand their concern, and I realize this is an issue. I feel like an awful parent every time. But, I think I am in a more complex situation than they realize. Let's go back a few years. Jaycee was a healthy weight when she entered preschool at age 3. During the preschool years, her weight started to stack on. She was hospitalized 7 times during her three years of preschool and was sick a few more times but treated at home. Oral steroids became a common medication during those years. She ate and ate while on them. I would tell her no at some point and she would cry while signing "eat." I didn't know what to do; no one prepared me for her appetite and how to respond to it. During those years, her lung issues really became a problem and her asthma symptoms weren't controlled well by medication. She wheezed in cool weather. She wheezed in hot weather. I was afraid to take her outside most of the time because I was afraid of triggering an asthma event. Hence, exercise was limited to what we could do in the house. I purchased an indoor trampoline, a large therapy ball, and other games to play indoors. Getting her to comply with them was another story. Getting her to comply with outdoor activities is hard too. What does she like to do at a playground? Swing and not run and climb to get real activity. I know, I know, I am making excuses. I realize that. But, with Jaycee it is simply not an issue of I am feeding her too much. Her medications affect her weight. Her hospital admissions and illnesses affect it. Her almost 2 hours of sitting doing nebulizer and vest therapy treatments impact it. Her Down syndrome, which generally means a slower metabolism, is part of the problem. The fact that she eats extremely fast and doesn't seem to feel full is a problem. I still feed my 10 year old on a toddler plate so her portions will be smaller. Almost every meal, she wants more than what I give her. I restrict her diet for acid reflux precautions already (no eating 2 hours before bed, limited tomato based foods, little/no chocolate, etc.). What can I say? I am a terrible parent. Don't worry though, because I will be reminded of that at her next specialty appointment.

5. I do not care if my child does her homework. Sorry Mrs. Tolley! After your child has a couple of scary illnesses that almost take their life, your priorities change. That happened for me in 2013 when we weren't sure if Jaycee was going to survive after being intubated and in respiratory failure. Then a similar event happened again in 2015. It became clear that life is just not guaranteed for sweet Jaycee. After experiencing some things like that, it is difficult to fight your way through doing homework with your child. When Jaycee throws a fit and refuses to do her homework, I give up. I have learned to pick my battles and completing homework is not a battle I am willing to pick after a long day. Jaycee is not given a free pass; she will be put in time out or have movie time taken away, but I will not stress myself out to get her homework done. In all honesty, Jaycee's teacher has been good about understanding my point of view on this subject.

It is clear that I can do better in some areas. When these areas are brought up by professionals, I do confess my faults. They try to convince me to change my ways probably seeing me as a rebellious mother.

But, I will say that sometimes I am not given enough credit by these same people. Where are the doctors when I am setting alarms to wake up in the middle of the night to give her a breathing treatment? Where are they when I do her 50 minute medicine regime twice a day no matter where we are or what we have on the schedule? Where are they when I have a taught my child a skill to be more independent? Where are they when we are sitting on the couch simply loving each other? No, I don't get high fives and "Good job!" for those things.

For all the way I mess up as a parent, I can assure you there are plenty of things I am doing well. Now, who wants to celebrate the things I am doing well with a tall glass of 100% undiluted apple juice?


  1. I love your blogs, and enjoy reading each and every one of them...to me the important thing is you are raising your children in a loving, Christian family.

  2. Thank you for this post. I too am raising a daughter with Down syndrome and I have done all 5 and more! This really resonated with me.

    1. I have more than 5 too! Heehee! Happy Parenting!

  3. You love your daughter and that is clear from how you talk about her. You are doing what you do in her best interests. No one should judge anyone else, as they have not lived their life. I'm sure if people who judge you lived a day or week in your life they would soon change their view. You need to do what works best for you and your family, others don't know best about what that is.

    1. Thanks so much! And thanks for reading!

  4. I'm sure I'm judged for not eating enough, so I'm with you on the food problems. (Sometimes, when I am stressed, I cannot eat.)

  5. Thanks for encouraging all of us "perfectly imperfect" parents by sharing this on the Snappin' Saturday Share - 42 last weekend!


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