My Own List.

I read an article a few months ago that was sent to me about what a mom wished her friends and family knew about being a special needs parent. Each one of her points loudly resounded with us and I haven't stopped thinking of my own list since then.

I hope those who know and love us see a glimpse into our world.
The good and the bad.

1. We are tired. One of the things that I clearly under-estimated was the sheer exhaustion of parenting children with special needs. During the day, I am a homeschooling, house cleaning, laundry folding, dog walking momma just like everyone else. It's just that I have the added burden of multiple Dr visits weekly, doing therapy and exercises daily, wound care, g-tube feeds, and carrying around a 30 lb. "newborn" while trying to keep her 3.5 year old mind stimulated, and..... I'm exhausted. Although, we have had better nights lately, we are always up at least once during the night, and most nights it is several times. The middle of the night seems to be when the worries suffocate. It's hard to go back to sleep when you are worried that coughing child at church yesterday might send you to the hospital with your daughter in a few days. Or that she will start a downward spiral that her body cannot fight. The g-tube issues wake us, but the worries keep us awake.

Yes, we are working on that.

2. We feel isolated. We are not your "average" family. We can't go to the church picnics/gatherings/parks/playdates/etc. for various reasons, so when you ask, "Why didn't you come?" It's hard not to go into the litany of reasons (but many times I do) just to make you understand that we want friends and fellowship as much as the next family, but our family is not traditional. I'm sure you never even thought that Gianna can't be in the water 3 weeks post-op, or that rambunctious excited kids playing could knock her over and send us to the hospital or that watching all the kids jump in the bounce house would be torture for my girl who cannot.
I'm sure you don't realize that Celia cannot regulate her body temperature, so she can easily over heat outside, or that she dehydrates easily no matter how much water we pump into her tube so we are always monitoring that carefully. Celia is a FULL TIME JOB for one person in social settings, so when one of us is caring for her, the other has the other 3. It leaves little time to socialize.

Our life is not as carefree as it once was. We've accepted that. In fact, we absolutely LOVE the children God has entrusted to our care. It's not a burden- caring for them and adjusting our life is OUR JOY so please don't misunderstand what I'm saying.

But it doesn't mean we don't like to get invites to things every now and then.  We might have to decline, but it's nice to be invited. Most of the time this really doesn't bother us (see #1) but at times we do feel isolated.


3. We try to be "normal". Sometimes when people say, "How is Celia?" I try to be normal and spare you the latest and greatest medical test/opinion/problem of the week. Sometimes I just don't want to talk about it. Sometimes I know you are asking to be kind, but don't really want to know, and then there is sometimes I just. want. a. friend. to talk to and the details come tumbling out before I can stop them. It can be exhausting- I know. We are not your "white picket fence" perfect adoption scenario family. Our life is messy. We have worries and fears about finances,health issues and long term prognosis that we try to keep hidden for the most part.

Nobody wants to be around Debbie Downer. I get that.

But I hope you understand that "How is Celia?" is a loaded question. If you don't really want to know, don't ask. HA! I  do try to spare you from most of it, really....

4. We are Proud. Forgive me if I tell you more than once how proud I am of all of my girls and boys. Celia learning to clap with her feet, the big girls including her in a special game they created, Gianna's bravery surgery after surgery, the boys bending over backwards for their sisters,or Sofia walking next to the wheelchair holding Celia's hand are all proud mom moments I love to share. We truly love our life. It can be exhausting and worry-filled with all these medical issues but making memories with these amazing 7(almost 8)  kids of ours is what we love to do.

5. We have "Holy Moments" often.  When we got Celia's diagnosis last fall, a precious friend emailed me and invited us for dinner that weekend. While the men played outside with the kids, we sat on her screened in porch and cried together. She shared the rawness of the blow we had just been dealt, and followed up with love in action. It was a sacred time for me to have her pray and cry with me and share some of her rawest moments to encourage my heart. When people come up to me and tell me they are compelled to pray for us often, when friends answer my phone calls and actively seek to encourage me, the texts of encouragement, the people who want to figure out a way to get Celia the equipment she needs- they are special times that we would never had the privilege of having without  sweet Celia. Those precious moments are tucked in my heart as holy, sacred times of encouragement straight from God Himself.

6. We are humbled. When I think of who I was before Celia, I don't like what I see. I was insensitive to people with impairments and honestly was too self-absorbed. God has used Celia to take the mirror to my heart to see that I needed Compassion. Patience. Simplicity. Genuine Love. I was one of those mommas who" could NEVER do a child in a wheelchair." I shudder to think what I would have missed out on if God had honored that  selfish request. Celia blesses my soul every hour of every day. So do all the others of course, but Celia cannot do one thing she wants to do, her fully intact mind is trapped in a body that will never do what she wills it to. Yet, she never stops trying, she is always joyful and she is patient despite all her adversity. Who wouldn't want a Celia to hug and kiss on all day?!?

7. We are human. We have bad days. We struggle with the financial impact of all of the co-pays, hospital stays g-tube supplies, and medications needed. We wish God would at least make that part easy. We get frustrated that we can't leave for a couples weekend, or even 24 hours because no one knows how to care for her but us. We'd like to be "more normal" sometimes. We get tired of the stares.
The comments. The sleepless nights. So let me apologize in advance if you catch me on a bad day.
We always get re-directed to the blessings in our life and focus on them instead. Some days it takes us a little longer than others though. :)

8. We compartmentalize well. We have been given the grace-filled ability to put "stuff" in a "box on the shelf." Gianna's next surgery in November? Haven't given it a thought. We'll pull that box down and deal with the magnitude of another surgery when we have to. We really have been blessed with this new-found ability to deal in the "here and now" and not stress over what is ahead. Well.... except in the middle of the night.

But we really are working on that. ;-)

9. We have learned to Love Heartily. We savor the snuggles. We are in no rush for them to grow up. We try to sweat the small stuff less. We strive to make memories with ALL our kids as much as possible. We read one more book, give one more kiss each night because we just don't know about tomorrow.

But we have today.

And we are richly blessed.