Knackered? That one I had to look up, and I’m so glad I did! Now I have a humorous new way to describe how exhausted I am.
I knew motherhood would be tiring, but I had no idea the full reality of what my baby bird had in store for me. The unexpected part is that the exhaustion didn’t really set in until he was about 7-8 months old. Adrenaline fueled me for the first few months when I didn’t yet know what a blessing newborn sleep was. Forgive me sandman for ignoring your gift! My son has never been a great sleeper, but it seems to get worse as he gets older. Such is life.
The lack of sleep is not what has me the most knackered, though. Two days ago my son was diagnosed with cerebral palsy. Two months ago he was diagnosed with a rare seizure disorder called Infantile Spasms. Before that it was myoclonic seizures, reflux and major developmental delays. That’s what has me knackered; that’s what I’m tired of. I’m exhausted from weekly doctors appointments, giving medications three times per day, weight checks, feeding issues, and having a 3 month old in a 10 month old’s body. I’m knackered from waiting for improvements and being disappointed month after month. I’m exhausted from explaining his conditions over and over again to family and friends who have access to Google. And mostly, I’m knackered from not knowing what my baby boy’s prognosis is and the fact that we have a lot more waiting ahead of us.
Having a special needs child is something that both my husband and I were honestly always terrified of. In our minds, it would be the worst possible thing that could happen. I feel so awful to say that now because our son is definitely the best gift we could have received! It was pure ignorance that made us fearful before. We didn’t think we were strong enough. I didn’t think I had enough patience. We just didn’t think we could handle it. We were right! We are not strong, patient or capable enough. But we are learning to be. God is using our baby as one of our most influential teachers. One of the most important lessons he is teaching us is acceptance. By understanding his needs and what it means to be labeled “special needs” we are learning to be more accepting of others with special needs and their families. Fear is overcome with knowledge, and we gain a little more everyday.
We have to wait longer for milestones, but it makes them all the sweater. We have to learn new strategies, like how to help a teething baby who can’t hold a teether, but we’re becoming better at adapting. We have to go to extra doctor’s appointments, but we have such a great support system in our providers. This is so hard! But it is making us so much stronger and bringing our family closer together. I’m knackered, but I’ve never had someone in my life so worthy of being knackered for. I would do anything for my son. I will keep pushing past the exhaustion and do whatever my son needs for me to do. Whatever it takes to help him use his skills in the best way possible. Push past knackered feelings to ensure success for my son. Even if success now means something different than it ever did before. He is more than worth it!
I encourage you to beat out the fear of the unknown by learning just one thing about children and adults with special needs. Pick something and just type it into a search engine. Autism, Downs Syndrome, Cerebra Palsy…what’s one thing you could learn?
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.” Matthew 11:28-29