~ I Peter 1:3, NIV ~
This week we celebrated Easter. We were reminded with beautiful songs and rejoicing that our Jesus is a risen Savior! As believers, we can live in hope and expectation of our own resurrection day.
On one of our spring break evenings, we went out to a restaurant and left Liam at home with his caregiver. The restaurant was a loud one with an arcade that causes sensory overload for Liam. It is a place that our girls love, but Liam hates. As we sat eating our dinner and talking I thought, “This is what our lives might be like if all of our children were typically developing.” Sitting there felt strange. After nearly a decade of being Liam’s mom, eating and drinking my own food without needing to feed Liam, give him a drink, pick up books that he has thrown on the floor, and change his iPad video (repeatedly) always leaves me feeling antsy. I have a difficult time sitting still and conversing with my family because I am so used to the nonstop rhythm of trying to meet Liam’s needs.
That restaurant dinner clarified for me why I have been feeling so weary lately.
- NEEDS - Liam’s constant needs are overwhelming. He depends on us for everything. He needs us to feed him, tip the cup to his mouth for each sip of each drink, dress him, diaper him, and more. The minute that Liam gets an illness our whole family goes into a mode where everything and everyone is focused on keeping Liam comfortable and helping him heal. All of these care needs get harder as he grows. A tall almost-10-year-old with extremely low tone is so much harder to help than a toddler.
- ADVOCACY - The management of Liam’s medical team and insurance, his school team, and his other access needs is time-consuming. When these things are going well, they require time and organization. Difficulties arise regularly with them and sorting them out can be so consuming and emotionally draining. This week I have a court date to dispute a Medicaid issue and a meeting with our school district officials. Advocating for Liam feels so difficult at times.
I’m weary. My weariness isn’t quenched by sleep or a massage or a weekend away or a mom's night out (and let’s face it…those become about special needs and advocacy too because I have to get advice from my tribe of experts!). Things like these definitely help me to plug on, but the needs and the advocacy just keep needing me and wearying me. My bones ache and my brain screams with weariness. I become resentful of my weariness and my perception that the rest of the moms out there don’t live with this level of need feeds my resentment. I have no peace.
For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin.Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. (Hebrews 4:15-16, NIV)
Dear Heavenly Father, Give me a desire for you. Help me to look to your Word for the strength and focus to live my life with a heavenly hope and expectation. In your name, Amen.