We had a quick trip to Cleveland-less than 48 hours round trip! We like our new provider, he is brilliant. Our appointment lasted about 4 hours. We have a plan in place. We have a myriad of lab tests ordered that once the results are back, will further help to guide us. Here are some nuggets I have gleaned from our trip:
1. Prayer works. I don’t mean like a genie who grants me a wish. God hears our prayers and the prayers of others on behalf of us. Our first travel day-Monday-went smoothly and I give that credit to God for answering prayer. It’s okay to ask for intercession from others! Thankful for my community of prayer warriors.
2. Special needs families live in a totally different way than “typical” families. The planning is intense. We are always hypervigilant and on high alert, attending to our child’s needs and proactively trying to intervene before things go awry. Structure and planning help things to go more smoothly.
3. There are still genuinely nice people in the world. A kind and compassionate mom we didn’t know showed me kindness on two returning flights. Luke was really struggling and I was receiving the brunt of it. To actually be SEEN and not judged was a gift. We need more people like her in the world.
4. Roll with the punches and keep your sense of humor. Be as flexible as possible. Our challenges to get through security in Cleveland was truly comical. First time I’ve ever been patted down by a female officer! Evidently, my insulin pump and Luke’s cochlear implants were a concern. Just remember that these hiccups will make for a great story one day!
5. Don’t be afraid to request help. Two of the best decisions were to ask my dad to come with us and to request wheelchair assistance from the airlines. An extra set of hands is invaluable. Having an escort and wheelchair to help us navigate a large airport and get Luke from Point A to Point B was such a lifesaver, especially when our gate was changed last minute.
6. It’s okay to grieve, but then appreciate what you have. I often miss our old life. The easy, “perfect” life. The life where we didn’t have to plan everything, the life with no meltdowns, the life without communication frustrations, the life before specialists and therapies, the life where money was abundant and life was fun. These thoughts often crop up when traveling for a medical appointment. I compare the life I am living to the life I used to live. But wake up Buttercup! Don’t miss the beauty and purpose of your current life. Others are watching. Your child needs you. Rise up. (Preaching to myself here.)
7. Brave is what you do and brave is who you are. Never forget this. There are so many unknowns and so many questions to answer. If your child isn’t getting the medical care they need or deserve, you need to look elsewhere. Yes, it’s scary. Yes, it’s expensive. But getting on that plane to see a new provider may be the very thing your child needs to begin his journey to healing.
8. Practice Gratitude. We can find many things (big and small) to be thankful for every single day. Diligently look for them. The trampoline in the doctor’s waiting area was definitely one of them!
9. Seek the advice of others. I suggest seeking advice from others who have been there done that (BTDT). The special needs moms you trust and align with in vision. The ones that are have been on the journey longer. The ones who have traveled with their special kiddos. These moms have great insight and are usually willing to share their wisdom.
10. Give yourself grace. You are doing the best you can and you are doing better than you think! You feel as though you have the weight of the world on your shoulders. But dear, it’s not for you to bare alone. Remember to practice small ways of self-care, even when traveling.
-Jo Anna
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