Over the years, I have many people ask us questions on how we cope as a family with chronic illness. Below you will find some of the questions asked and the types of responses I typically give.
1. How do you always have a smile on your face?
I don't. Perhaps it seems that way, and many days I do feel joy in my heart. Other days I don't. Typically on those days, I stay home and find comfort in the quiet of a day. I guess the easiest way to explain it is, I am not always happy, but I do always have joy. I find my joy in my faith in God and comfort he has given me over the years. He has proven to be the one consistent in a not-so consistent life. For that I am grateful. But I have down days. I cry. I scream. I curse. But when it comes down to it, I make a choice...I choose to be happy. I choose joy.
2. How do you do it?
I just do. These are my kids and I do everything in my power to give them the life they deserve. If you are in my place, you would probably do it too. I try to normalize my children's lives despite the challenges they face. I let them be part of the process. Even at the end of Halle's life, I tried to give her the driver's seat. She helped make decisions. I celebrated her time with us and allowed her the opportunity to give us her final messages and wishes. I showered her and my other children with love. I may not be able to fix what they must deal with but I can be there for them through it all.
I have also surrounded myself with family and friends that treat me and my family with respect and noramlcy. The one thing all my kids want is to be treated like an average kid even though they face not-so-average life experiences. That helped Halle the most in the end. She had a core group of friends (both teens and adults) that were there for her (and us) I mean really there for her, right up to the end. She knew she could count on them during the most difficult time in her life.
I have found comfort in my faith. We worked to find a church that welcomed us with open arms and gave no judgement. Halle found a special place in the youth group at our church. She rocked out on Wednesday night services, she volunteered with younger kids on Sundays, she asked for guidance on how to share her faith, and when it got to difficult to make it out to church, Halle and our family worshipped at home.
I found a group of medical professionals that worked with and for our family's specific needs.
We worked to build a good support system for our kids and our us.
3. How do you find the right doctor?
I do my research. It is amazing how quick people are to share their own experiences with doctors and specialists, both positive and negative. Word of mouth has been my first route. I then research these physicans on line and see what type of work they are known for, what others are saying about them, and if they have written any professional articles on their area of speciality. The key to navigating the world of pediatric disability is to find a great team leader, that would be your child's pediatrician. He/she will be the one that guides your child's overall care. With any doctor your child sees, trust your gut. Do you feel comfortable when talking to him/her? Does he/she talk to your child as well as you (if age appropriate)? Does he/she have a good bedside manner? (They did go into pediatrics - they should enjoy working with children) Does he/she include you in the decision making process? You are part of your child's medical team. It takes work to build trust and respect with your child's team of doctors. Put the effort in - you will the it is worth the time. If you find you are just "not clicking" with a doctor, it is okay to find a different one. Their feelings won't get hurt. There are some amazing doctors out there - take time to find the ones that work best for your child and family.
4. Are there any therapies you have found that you would recommend?
YES! Some include: aquatic therapy, interactive metronome therapy, pet therapy (ask when admitted to the hospital if they offer this), music therapy, as well as all the tradtional speech therapy, feeding therapy, physical therapy and occupational therapy. We have been blessed with some AMAZING therapists over the years - their work has made a tremendous impact on my kids lives.
5. How do you get a referral to a type of therapy or to a specific specialist?
If it is recommended for you child to see a specific specialist or be evaluated for a specific type of therapy, your child's pediatrician can make that referral. Again, this is why you want to have a good working relationship with the pediatrician and his/her office staff. The nurses, front office staff and medical records department help keep that office running. Show them respect and kindness - I guarantee you will need them at some point in your child's life.
6. What do I do if my insurance company denies a medicine, doctor or treament?
Become well versed in your insurance benefits. Somethings may be denied, that does not mean you won't get them. If something is deemed medically necessary for your child, there is a way to fight a denial. Most doctor's offices have people to help you with this process. Again, know your insurance benefits, that includes how to navigate the appeals process. Sometimes a letter or call from a specialist is necessary and sometimes you may have to appeal a decision more than once. I have also been known to cry on occasion with the review board.