…moving on to 2019

I typically do not like to wish the years away. With each passing year my kids get older and I, without fail, age more and more. I often wish I could freeze time and enjoy all of the small moments that make life so worthwhile, but not this year.

I am completely ready to move forward and say GOODBYE to 2018.

When looking back at this year, we have had far more good times than bad, but the bad times have managed to define 2018.

This year we discovered, A, our youngest daughter, has a severe speech delay related to motor function. We have worked hard to get her properly diagnosed and searched to find the right therapist to help with her specific needs. The first assessment also raised flags for larger developmental concerns. Luckily this was able to be ruled out with further testing.

‘A’ works hard every week to develop oral muscles and learn new sounds. For the first several months she cried each time we went to speech therapy; speaking is difficult for A and she knew how hard she had to work during each session. Over time she has adjusted to our weekly trips and she has grown so much. She is not speaking at the level of her peers yet, but now she can communicate with us and make her needs known. Her frustration and tantrums have reduced and, for that, we are thankful.

‘A’ is making such great gains. We are hoping 2019 brings her continued improvements and maybe even the ability to graduate from speech therapy.

While 2018 brought recognition to A’s ongoing language difficulty, S had a different challenge in life.

This year our oldest daughter, S, spent a week in the hospital. Although this was only 7 days, it has changed our family forever. I believe that everyone goes through a life-changing event at some point, but I never imagined it would happen to my 3 year old toddler.

‘S’ was eating breakfast with her dad, sister and nanny when freshly brewed hot coffee accidently spilled onto her lap. Her dad and nanny worked quickly by removing her clothing and got her into the shower within minutes. They immediately got her in the car and drove to children’s hospital where she was taken to the burn unit.

‘S’ was in shock. She remembers very little after the shower until she was admitted to, what she calls, “her new bedroom.”

The following 7 days were a combination of sleepless nights anxiety, tears and pain, yet I remember every detail.

We were told S could need skin grafts. We were told she may be in the hospital for weeks. They threatened a feeding tube in S’s nose. The staff was frustrated with S at times and we had to remind them that she was 3 years old and scared.

‘S’ received doses of pain and sedative medications that we would never have thought she’d see in her lifetime. We watched her spunky spirit change into anger and frustration.

After being in the hospital for a week S physically improved. She was able to avoid all of the scary invasive treatments, including surgery. We went home and as she continued to physically improve, we began to see the emotional changes.

While we are still not out of the woods, we have come a long way. We still have appointments at the burn unit to see if S will need laser surgery. We go back every few months to the occupational therapist to get fitted for new compression shorts. We have topical treatments that we put on the burn sites each day and she’ll have to wear her compression shorts for a year but, overall, we have a healthy little girl.

S is healing and A is speaking so happy ending therefore happy 2018, right? It seems so but here’s the catch: 2018 has caused our false sense of comfort to be just that, false.

We have realized that accidents happen so quickly and fate is out of our control. We have done all of the same developmental education with both girls, yet A has a speech delay and S does not. We have always practiced safety from carseats to helmets but it turns out accidents happen when least expected.

I, personally, am fearful of most things now. The meer mention of coffee makes my skin crawl. I feel like I may get over this someday, but that hasn’t proven to be true in the last 6 months.

Despite all of this, I’m most frustrated regarding the change that this year has brought to S. She has always been fearless and excited about life. When people ask me what she loves, I would say “everything.” ‘S’ would make everything exciting and every day was “the best day ever.”

After 2018, I have found S to have many new fears and anxieties. She gets worked up over things like the flu shot, hot chocolate on the Polar Express, the tempature of bath water, and the meer mention of “taking a shower.”

These are all small things, but to me, it’s a daily reminder of the trauma my little girl has had to endure. It also makes me fearful of any accident in the future.

In order to accept the change that we have experienced, I try to remind myself, and my family, of the the positive things that came from this accident.

‘A’ was sitting next to S and luckily the coffee did not make it to her seat. Also, while we in the hospital A was taken care of by almost a dozen loved ones who kept her entertained, fed, dressed, clean and happy while her dad and I stayed at S’s bedside.

‘S’ received so many cards, balloon, crafts and presents while in the hospital. We felt so blessed and humbled. We learned how kind and thoughtful our friends, family and co-workers are.

Through this experience, I’ve learned what it means to have a solid relationship. My husband was at his lowest when this happened and still rarely speaks of it. I have learned that I can be strong enough for the both of us. And on the days that I am sad about S’s accident or A’s speech difficlities, he picks up all of the pieces. We need each other to get through each day.

Also, with both S’s and A’s situations, I learned how to be on the other side of the health care team. I learned that being an advocate for your loved is necessary. I now know how my patients families feel each day when I use big words and keep differential diagnoses and prognoses to myself. Sometimes, even if it’s bad news, the patient and family need to know the information. Being left in the dark is much harder than hearing bad news.

Lastly, just recently I have gained perspective. S’s skin will never be the same and she may even still need laser surgery, but her life was never in danger. We never had to discuss a life-or-death scenario which is a common conversation with children that experience burns. And ‘A’ is learning words every day. Eight months ago she had no words and very little sound, and now she can communicate enough to make her needs known.

I am working hard to appreciate what I’ve learned in 2018 but I’m ready for 2019!

So to you, 2018, thank you. Thank you for the life lessons we have gained and the comfort of knowing we have so many people who love us. Thank you for testing us, and showing that we can get through more than we imagined. We are thankful that we now are diligent about safety but also recognize that accidents happen. We are also thankful that there are so many resources for kids with disabilities, big or small.

It’s hard to decide whether S or A had a harder year: S with acute medical needs or A with ongoing therapy needs. Either way, we have jobs that provide us with insurance to care for both girls as well as a roof over our heads and food to eat. More importantly, we have love which has given us the power to maintain stability during an otherwise unstable time.

Thank you, 2018, but it’s time to say goodbye.

Bring on the new year and a chance to practice our new life lessons and appreciate the little things in life!❤️

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