Who is your family? Who is there for you?

Imagine you have been preparing for a huge milestone birthday celebration for, oh, maybe a year. You’ve talked about it since your child was little. They knew it was coming. They were just waiting for that one big birthday.

You picked out the special dress. You booked the hall. You booked the church and the band. You made sure there will be enough food and cake. The bar is taken care of. The special girl and her attendants need transportation because they aren’t old enough to drive and that special dress won’t fit in the minivan, so you rent a limo. Decorations are made to coordinate with the theme. Everything is moving along well, although it has been a pain in the backside to get everything coordinated for the same day.

All along, you’ve been telling the rest of the family to save the date. You have made certain they know because it’s a big deal. You’ve talked about your dream of it since they placed the tiny Mexican-American girl in your arms. You want her to know her heritage.

Yes, she is adopted. She is your sweet daughter. She has special needs. Her birth mother drank alcohol when she was expecting your sweet baby. Birthmom liked to party. She didn’t realize it would cause birth defects, brain damage and hurt her entire central nervous system. Your sweet girl has bones missing from her forearms, she has ARND (alcohol related neurological defects). Her CNS (central nervous system) has been very damaged by the partying. Still, you and your family celebrate the adoption and you learn to live life with short arms and ADHD.

Now, Miss Sweetie has her big day coming up. It’s a month before the quinceañeros, the celebration of a girl turning 15 & becoming a young woman. The dress is in the final stage of fitting, things are settling in as they should be, even though your stomach and brain are a nervous wreck, trying to remember if you have everything right. Invitations are sent out and RSVP’s aren’t coming in.

Your entire family turns you down. Oh, they know how much you have been planning, how long you have waited but there’s this bike tour that’s the same weekend. “We would love to come but this is a really neat bike tour and we all signed up. No refunds. Sorry. We will catch you another time. Maybe Christmas if it’s not too snowy?”

Tears of anger & frustration well up in your eyes. What in the world are you going to do? The entire family just bailed. You have paid for everything and there will be about 8 people there.

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You put out a plea to a couple of your Facebook support groups, asking if anyone is able to get to your town to help your daughter celebrate. Above, you will see the moms who made the trip to help Miss Sweetie enjoy her quinceañeros. We came from many different states with husbands and kids. We are your family, your support family. We can’t pick up and get there every time but we will try. We will make sure to keep you in prayers, we will send cards and messages, we will listen to you and read your posts and texts and return them with words of love, encouragement and support.

We had a PARTY! It was wonderful! It was perfect!

Families who have adopted children with special needs aren’t surprised by family making other plans and shunning them. It still hurts though.

See those kids in the pictures? Nearly every one has some type of disability. For the most part, they ‘look normal’. I hate hearing that. You have no idea how un-normal our family life is. But, we partied and celebrated and had loads of fun. We were, and still are, a FAMILY. Family is there for each other. Family loves each other. Family helps. Family prays. Family sacrifices.

WE ARE A FAMILY!

HAPPY QUINCEAÑEROS, MARISSA!

 

PS–This story is about my friend and her daughter. She gave me permission to write about the heartbreak and love in the adoption/special needs world. Thank you, Linda.

We are Easter Seals Ambassadors!

imageYes, the kids are the co-ambassadors for Easter Seals Michigan! We were called in late December, asking us if we would let the kids be their representatives for 2016. Of course I said yes! The guys came over to talk with us about it right at New Years time. As you can see by the SNOW ON THE GROUND IN OUR PICTURE, our professional photo session was in February. 😳😳

Our activities as ambassadors so far, have included the kids each getting to choose raffle winners for cars & cash, speaking at the Easter Seals Michigan annual meeting and doing a zoo walk in Grand Rapids, Michigan. We will be at the Detroit Zoo walk on August 7! PLEASE join us, or donate to our team if you live too far away to join. Our team page for joining us and donating

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We went to Maine to meet Gabby’s running buddy, Sarah. Gabby was in 7th Heaven! I was too, getting to meet my email pen pal, Barb. That’s Sarah’s mom. We also met all the rest of their family & a few friends. The kids said it was better than Disney!

Since returning from Maine, the kids have been bored! (3 days…) It’s gonna be a long summer… At least I have 2 camps scheduled in there! Yay, me!

The fallout after being good for so long

Our daughter has multiple diagnoses, FAS, ADHD, probable PTSD, early trauma, Hashimoto’s Disease are the current ones. She’s outgrown CAS (Childhood Apraxia of Speech–hard to understand her speak), FTT (failure to thrive–she was the size of a thin American 4 month old at adoption…she was 25 months old), and a few more. Our son seems to be headed for another diagnosis now. He also had early trauma (orphanage life) and has ADHD. Yes, our house can be very lively, very loud!

One of the things that happens with my kids is that they ‘hold it together’ in school, at church, at most social events until we get home. Then it all breaks loose. It’s usually not screaming rages anymore, it’s more like a building anger. If I give them time to ‘decompress’ before asking questions or requiring homework to be finished, things usually go better. The anger that used to be directed at me is now usually directed at each other–mean words, slaps, kicks, punches when I’m not watching, hurting the animals in little ways: a small pinch, an ear tug, pulling a paw a bit too hard.

Lately, we have not been taking our daughter back to church for middle school group time. This was a choice I made because of a number of issues. While she would have a GREAT time there, there are hundreds of kids and she’s among the smallest. Three times, she had the wires knocked off her braces while kids were trying to grab candy that was thrown. (I don’t think anyone should need a mouth guard for youth group time! LOL!) She doesn’t understand the messages. She loves the music and the social aspect but the messages are way over her level. Lastly, the fallout at home became extreme. She wouldn’t go to bed, she was too hyped up. She would stay awake till midnight and be angry the next morning when I got her up for school. It just wasn’t worth it.

We run into similar problems going on vacation. If we stay with relatives, both kids will act pretty good for the 3-7 days we are there. Usually around day 3, we have building anger and nerves. By day 5 or 6, I’m spending lots of ‘time in’ with them. (Time out means they are alone in a room & who knows what they’ll do–rip things to shreds, hurt themselves, even worse?) I usually dread vacation times because I know I will be “ON” 24/7 for the next ‘x’ number of days. I am thankful for their medication but that only goes so far. They certainly don’t become zombies on it!

When we have ‘time in’, I try to remember to pray aloud with the kids. To ask God to forgive me for being harsh and help me have a loving spirit. I also mention the reason for the ‘time in’. Parents of ‘typical’ kids might say this happens with all kids. I know it does, just not to the extent, the constant extent it does here. Parenting 2 kids is hard, parenting 2 kids with multiple needs multiplies everything.

I am thankful for friends who cheer me on from near and far. Social media has helped with support groups, so I know I’m not going crazy. (or not completely so–just a little off kilter!) I am thankful for God putting these people in my life. I am thankful I know Jesus and I can pray to Him ALL THE TIME. I am thankful for seeing the small miracles everyday. I am thankful God gave me a husband to balance out my wacko moods when things get to me.

Fallout is hard. VERY, VERY hard. Teachers don’t understand how the perfectly great kids at school could go home and ‘flip out’. Church leaders don’t understand how having a fun time can cause problems at home. It’s very real. We make choices to keep schedules and routines so we don’t get very much fallout at home. If I tell you we can’t make it to a function, please be kind. We aren’t shunning you, we are trying to manage our kids and our home life.

For now, we need a calm, scheduled routine. Maybe someday my kids will be able to go to fun youth group meetings, come home and just talk about it, not try to hurt the animals and stay up till midnight. Thank you for understanding our choices.

I wanted to be a mom for SO LONG…

I married ‘late’–at the age of 30. We wanted to have kids fairly soon. God had other ideas… lots of miscarriages made that pretty clear. The miscarriages were always very, very early so no one ever knew except me &, sometimes, hubby. I told my mom a few times & she didn’t care except to say she had a couple too. (her version of, “Yeah, so?”) After telling a couple people at church, I learned that few people seemed to care. What REALLY bothered me was when other women had miscarriages & people would just gush over them… And, a few months later they would announce a pregnancy & produce a cute little baby. That never happened to me. It made me really resent my friends when they became pregnant.

Yes, that’s mean of me. I can’t help it. It’s how I felt. 

After about 10 miscarriages, I stopped counting. No one else cared, why should I?

I am not QUITE so upset when women announce pregnancies these days–a combination of being ‘too old’ at this point and also having my 2 Russian beauties! My kids occupy most of my thoughts & time. When I knit, I pray for them, hubby and others. I research ways to help my kids. I look for things that might be good toys but also good therapy for them.

When you wait so long, pray for guidance and get a VERY CLEAR answer about the ‘tougher’ of the 2 children, you tend to narrow your focus in life–a LOT. Trying to help these 2 kiddos have a good life is very high on my ‘to do’ list. There are so many days I wish I could just change things and make them into ‘regular’ kids. 

My kids will never be ‘regular’ kids–they were chosen for us by God. They are special, they are perfect for us. They have helped us grow in ways we didn’t know we needed to grow. While I wish I could have had kids in my 20’s, the 2 I was given in my 40’s are the most wonderful gifts ever.