How to Cope with Multiple Special Needs Diagnoses
Every special needs family has their own unique story and journey. But one thing we all share is the initial shock and worry that sets in when we learn about our child’s diagnosis. Nothing can prepare you for that moment when you first learn that something is wrong. Your whole world is flipped upside down in a matter of seconds. This can happen over and over throughout a child’s lifetime. Some how, some way, as parents, we have to find a way to cope and to be strong for our children and families when we face multiple special needs diagnoses. But how?
My son, Blake, now just a few months from turning three, is one of these kids. I found out at 18 weeks pregnant that one of his kidneys was covered in cysts and would not function properly, if at all. When he was born, we were shocked and horrified to learn that, not only was the kidney covered in cysts, but that he had esophageal atresia and a tracheoesophageal fistula (EA/TEF) and needed major surgery to save his life. He was also had two holes in his heart and other common VACTERL birth anomalies. He survived surgery and was thriving despite all the odds.
Our next blow came when he was diagnosed at 11 months old with a congenital diaphragmatic hernia (CDH). This condition had been missed at birth and required another major life saving surgery. Then, at 18 months old, Blake was diagnosed with a chronic immune condition called eosinophillic esophagitis (EoE).
Every time Blake was diagnosed with something new, it felt like a huge punch in the gut. Like the life was being sucked out of us. We were filled with questions, fears, doubts, guilt, and so many other emotions. It never gets easier, no matter how many times you experience these situations or feelings. But one thing remains the same. We have a child who needs us and who depends on us, and who feeds off our energy and emotions.
So to answer the earlier question: How do we cope and how do we stay strong when dealing with multiple special needs diagnoses?
First, and foremost, we put our complete trust in God. He loves our children even more than we do, and His timing is perfect. I spent a lot of time on my knees praying and spending time with God. I vented to Him and thanked Him. Sometimes I told Him I was mad and angry and didn’t know how to move forward–but that I would give my anxieties, worries and doubts to Him and trust that He would guide us. I wrote down Bible passages and verses to recite when I felt overwhelmed. I went back to them time and time again.
I reached out to friends and family to form a strong support system. I learned to ask for help. I pushed my pride aside and asked for help–something I wouldn’t have done in the past. I changed my inner circle based on our circumstances. Not letting everyone in at once, but trusting a few good friends and family members to help us emotionally and physically. Other relationships moved to the back burner for a time, and I had to accept that.
I am a doer. I like to do things. Fix things. Make things right. I had to accept that I couldn’t change our circumstances. But I could learn everything possible about our son’s multiple special needs diagnoses. I could be involved and hands on. I then knew I was doing everything to help Blake through these challenges while trusting God and Blake’s medical team.
My motto has become one day at a time. That’s all we as parents can do. Put one foot in front of the other. Take one step at a time. Live one day at a time. I have learned not to dwell on the past or the future, but to live in the present. Each day is a blessing from our amazing God and I will treat it as such. Even on the worst days, there is always something to be grateful for.
Jill lives in Tucson, AZ with her husband Jeff and their son Blake. She worked in Human Resources up until 2014 when her son was born with VACTERL Syndrome which included EA/TEF. Jill resigned to care for her son full time. Later he was also diagnosed with a Congenital Diaphragmatic Hernia and Eosinophilic Esophagitis. Jill’s personal blog (Beloved Blake) documents his surgeries and health challenges, their family struggles, and Blake’s milestones. Jill loves writing and teaching others about what it’s like raising a child with complex medical needs. She wants to be a blessing to other parents just starting on this journey.
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