This week Matthew turned three.
This week I turned twenty-nine.
Next week I will celebrate nine blissful years of marriage.
In the past few years I have learned a lot.
Being a parent to a child with special needs child has the ability make time fly.
Your days get scrambled between IEPs, doctor appointments, therapies, and trying very hard to remember to put on deodorant.
While the days are flying by and your leg hair continues to need its own straightener, you learn a lot.
Medical terminology you once thought was a foreign language becomes everyday jargon. You begin to be able to not only pronounce your new language, but you can now spell words on a whim.
Life takes on new meaning.
And we learn new lessons.
1. It is okay to say no
Just because an extremely expensive therapy worked for someone else does not mean it is going to work for you. Even the best parents need a break. Sometimes a pajama day rejuvenates your entire house. Learn to say no. It will change your life.
2. The internet is your friend and foe
When we first brought Matthew home I scoured the internet to find all the information I could about his diagnoses. I spent late nights and early morning reading horror stories. I was a wreck. I was depressed. I had lost hope. I stopped googling things! But I have also found hope in the faces of those friends who share our journey. Facebook and this blog have allowed me to connect with parents who inspire me. They make me smile and warm my heart. We celebrate together. We mourn together. We are never alone.
3. You have to wear your big girl panties
If you are not the type of person who stands tall and speaks out, you soon will be. You will learn to trust your instinct. You will put your children and their lives at the top of your priority list. You will scream at doctors, nurses, spouses, and friends. You will make waves. You will lose friends. You will be better for all of it!
4. The medical community does not "know it all"
We are programmed to believe that the people in the white coats know everything. We trust them. We depend on them. We are wrong. You will become the most knowledgeable person regarding your own child. You will teach the teachers. You will have to explain it over and over and over again. You will learn that the feeling in the pit of your stomach is so much more important than what ends up being scribbled on a prescription pad. You will doctor shop. You will search for the best of the best. And when you find them, you will see them so often that they will become a permanent address on your Christmas card list.
5. The little things matter
The day my son held a yellow plush ball in his hands for ten seconds was celebrated. The day he screamed and screamed because he was bearing weight on his legs and standing should have been announced on the nightly news. The little things, the inchstones in a world of milestones, become all you strive for. Your heart will soar when your child first does something no one thought they could. You appreciate the department store that has aisles big enough for your wheelchair. You make friends with the waitress at your favorite restaurant because they don't flinch when your child has a melt down. You cry at the thoughtfulness of a friend who simply texts you and says "You are doing better than you think."
6. Somehow it all works out
In this special life, the world is unfair. Our children suffer. They cry. They take numerous medications everyday simply to keep the seizures at bay. And even then the medications don't work. Yet somehow at the end of the day when our lovelies are snuggled in their beds, the world seems better. We made it through another day. Our children smile at us, and the ugly from the day fades. When we find ourselves in the valley, when we can't find a way out, there is always a helping hand. Someone pulls us up and helps us out.
I know that the lessons from our journey are endless. I know that some days its so much harder to see the forest through the trees.
Yet, as I look back at this week I am blessed to have learned these lessons.