Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Tuesday, June 28, 2016

Happy birthday to me!

Its my birthday today. Another year older. I'm 49 today.


So close to 50.

I have never been shy about telling my age. I have lived what seems like three different lives, maybe even four, each birthday feeling like a badge of honor. But I have discovered once you survive a life-threatening illness, like cancer, birthdays take on a whole new meaning.

I am alive today!! Life is GOOD! Even if I was sick and still on chemo this birthday would important. Another year here on this earth, with my family and friends, loving my children, loving my Dean.

The birthday wishes have been flooding in on social media (the Facebook creators were brilliant at making us feel special!) and it has been so fun to see greetings from people I rarely get to talk to, and those special words from close friends and family who mean so much to me. Enough that I'm sitting here in a doctor's waiting room with a tear running down my cheek.

Thank you everyone, for celebrating this special day with me. With us. Makes me want to have a bonfire or something. 

Sunday, June 26, 2016

The long version...

Note: *Hitting "publish" on this post comes after much internal struggle. We're desperate, and nothing less.*

He first came to us for respite in March of 2015. A family in crisis, a marriage dissolving. Parents who were at their wits end dealing with emotional stress combined with institutional behavior they couldn't manage. Two weeks, then he went home. The other family couldn't believe how much more "settled" he was in just a matter of two weeks. Even his school staff commented on the difference. His sign vocabulary had increased dramatically, and he seemed truly comfortable. He loved it here, and we loved having him. He fit right into our family. But his coming wasn't for a new family, the purpose was to give his family time to pull their lives together a bit. He was a guest in our home.

A few weeks later we were asked if we would take him permanently. We said yes. Power of Attorney papers were drawn up so that his medical and educational needs would be met. He could get services here that had been lacking, in addition to a family experienced in managing his many institutional behaviors. Releases signed so all medical and educational records would be transferred. Thirteen months he has been here.

He has done very well here. We didn't really expect it, given the level of institutional effect on his little self, but he has attached to our family. He has bonded with several of the kids, and he has bonded with Dean and I. This is especially surprising given his fear of men when he arrived here. You can see his pure JOY with us in the pictures from the beach trip back in February.

Clearly, in the past year, there has been NO intent by the other family to parent this child. Never an inquiry into how he was doing. No questions as to where he was going to school or how it was going for him. What doctors did we bring him to? Was he healthy? No financial support for him at all. Nothing. I voluntarily sent pictures of him living life. An update that he had learned to feed himself, dress himself, potty training, etc. Those updates were never asked for, I just sent them. Surely they would want to know he was ok? Never a question where we were moving with him. Nothing. No desire to know. Hands were washed and dried.

His adoption should have been finalized ages ago, but couldn't be because of one loose end on their side, and attorney fees that weren't paid as agreed. Until Thursday. Thursday the other family paid the retainer fee to the our attorney. Clearly their desire was to get this process done once and for all!

The very next morning.  Friday. After a full year, one parent decided maybe this might cost them too much in legal fees so they want him back. Their reputation might be damaged, never mind that he has been out of the house for a full year!!! So much documentation we have about him NOT being wanted. After paying our retainer, demonstrating they want us to complete the adoption, suddenly "Oh wait. Never mind, I want him back now." On the other hand, the other parent, seeing how well he has done here, has granted us a new full Power of Attorney until the matter can be resolved.

Now we have a dilemma on our hands. Sure we take the easy way out. We could throw in the towel, avoid a legal battle and send him go back to a situation where he's not truly wanted. But what is "right" is not always the easiest path, is it? No, we are not willing to do that. We are not willing to sacrifice the welfare of a child to save face for the parent who didn't want him, who couldn't manage him, who is in over their heads with other adopted kids still in their house. No, we're not willing.

And so we come to you. I know we will now likely be blacklisted in the community who doesn't know all that has transpired. Who has listened to "Woe is me" stories over the past year but never questioned. Time is of the essence with a child's welfare at stake. Over the weekend we will need to raise $5000 for the attorney retainer fee, plus an additional $5000 to cover additional fees when those first funds are quickly eaten up by the attorney. $10,000. The whole situation sickens me. We just bought a new (to us) house with every penny of equity from the old house used as the down payment, and to fence the yard to keep everyone safe. We had only a few hundred left over to set things up for the kids, with a plan in place to rebuild our safety net over the next few months.  After all, we weren't expecting a legal battle to start today.

If you feel inclined to help us...Nothing goes directly to us. Funds are being collected by a trusted friend, to be paid directly to our attorney. There is a chance we will lose this battle. That even after spending thousands in attorney fees he will have to go back. We're not worried about saving face. We're about a boy.

Saturday, June 25, 2016

Parenting out of love or preserving one's reputation, who pays the price?

An adoption battle. A parent's nightmare. Unexpected attorney retainer for actions that must be taken immediately. Monday. Because we're not about "saving face", we're about a boy. I want to tell you so much more. I want to tell you about a culture of adopting kids with special needs when parents have no idea what they're doing. I want to tell you about parents in over their heads, trying to do whats right. Then I want to tell you about the other side. About abandonment. For privacy reasons for all parties involved we can't give any further details.

If you feel so inclined to help, all funds go to a trusted friend, to be paid directly to our attorney.

Wednesday, June 22, 2016

The Stranger in My Car

A few weeks ago I was called by a county caseworker. Given my name by an inmate in her county jail, she asked for my assistance in getting him from the county jail to a chemical treatment facility. It would require a full-day commitment due to distance, but I said yes. This person is estranged from his family, and having experienced that before I understood how difficult it can be to advocate for someone when they didn't really want the help.

I arrived at the county courthouse to sit through the person's public sentencing hearing. When he walked in I was taken aback. His body spoke of hard drug use: blonde, with a fresh haircut and shave, his eyes were bright and clear yet he was the thinnest human I had ever seen aside from the orphans I have met over the years. He had been in the county jail for a couple of months. I don't doubt he had actually gained weight during his stay.

His public defender explained to the judge she had spoken with his extended family about his history, how he started using drugs at the age of 15 or younger , first recreationally, later as a means to escape the situation his family had been involved in. He struggled with clinical depression without the aid of medication. He spent his high school years in alternative learning programs designed for "at risk" kids due to his mental health needs. The judge accepted the recommendation of the prosecuting attorney and stayed his sentence of 58 months in federal prison, instead sending him through "drug court" and the county's new chemical treatment program. Although only two years old, with the very intensive counseling and on-going supports they have in place, this program is seeing the highest 1 year sobriety rate of any similar program in the country. So, so lucky this boy. I prayed for him. That whatever got him to this point would be helped with this program. That he could feel the love of his family he didn't want contact with. Why didn't he want contact with them?

He loaded his meager belongings into the back of my van. A backpack and small box of keepsakes was was all he owned. We mostly rode in silence, me making small talk here and there as I tried desperately to talk to this stranger sitting next to me, but he was withdrawn and angry over some situation that had happened just before the hearing. He seemed resentful of my help, and I wanted to tell him how difficult it was for me to get there. I realized although he is about to turn 29, he seemed much younger. When teens start using drugs, their brain development stops at that point. This "kid" had started using at 15, which matched his current, very teen-like attitude.  I wanted to ask "How did you get to this point? "  and "Why don't you talk to your family?" and "Is  this your "rock bottom?" But this was his thing. He is an adult, after all.

We arrived at the treatment facility.  He followed me through the automatic sliding door as I gave his name at the front desk. I turned to introduce him and he was gone. Through the glass doors I could see him on the railing along the front walkway, his hands shaking as he lit a cigarette, his knee bouncing in nervousness. The staff intake person, John,  gave me a knowing look. "Here's a cart to bring his things in. I'll be right here if you need me."

The cart was a bit awkward to steer, and I knocked it into the side of the building as I approached him. "Lets go get your things." I said, as I dragged it past him, opening the back of the van. I stood behind the open doors and took a breath. "Please God. Help me help him through this. Give me the words. Give me wisdom. Show me when to speak and when to back off." Like a young boy he watched as I put his things on the cart, reluctantly following me back inside the building.

John greeted us again. "We'll be going to the in-take area..." and I could see the kid's eyes flashing panic as John listed the items not allowed in. "We're big on family involvement here. There are several times over the next few weeks when you can invite family to participate in counseling sessions." I hoped he would involve his family. It was all up to him now. "Well, shall we?" John asked, as he gestured toward a locked door.

"Do you want me to go with you?" I asked? Oh, how I hoped he would say yes.

Without looking at me he mumbled his answer "I know you have things to do. Just go."

I understood. He was upset, maybe even embarrassed, by where he had gotten himself.

I gave him a hug anyway.

This stranger. I hugged this stranger, feeling his bony shoulders as my stomach twisted itself into knots, tears threatening to spill from my eyes.

I sat in my van and cried the tears known only to mothers with broken hearts.

My son.

My baby boy.

Please God, help him.

Wednesday, June 15, 2016

Loving Home

It's safe to say we are absolutely loving our new house and yard. Our summer is going to look a lot like this.

Tuesday, June 07, 2016

Doctors, please listen to the parents!

Remember Angela's whole liver craziness? Remember the first time we found her in a coma, she rode by ambulance to the hospital, and I got raised eye brows over the mysterious coma?

Remember when we found her in a coma the second time? Then the questions started about who could have put something in her tube. And I refused to do her cares or feeds while she was in the hospital because I went back to when Angela's gtube was placed.

Our pediatrician was recently at a conference of the American Academy of Pediatrics (AAP) in Minneapolis. One of the speakers discussed "Listen to the Parents", and this slide appeared on the screen.

Our pediatrician was excited. "Hey! That's my patient!" 

On the far right side, under "discussion", can you read the last sentence? It says, "...leading to the unexpected diagnosis and proving that her parents were right all along." I won't lie. It feels good to be validated. 

Apparently Angela's story is making the rounds. I hope that physicians are learning something from it. I know I have learned to trust my instincts even more. 

Monday, June 06, 2016

20 years

20 years ago today, listening to the sound of a helicopter land on the roof of the hospital where I lay on an operating table, the doctor pulled her from within me.

 There would be none of those first, lusty newborn cries. There was only silence.

The "ooh" and "aahs" she should have been greeted with were replaced by hushed whispers in the corner of the room.

Helpless, with the doctor's hands still inside me, I carefully asked, "Why isn't my baby crying?"

I would spend the next 20 years asking "Why".

Why is she breathing when you said she never would?

Why is she celebrating her first birthday when you said she never would?

Why is she walking when you said she never would?

Why is she talking when you said she never would?

Why is she reading when you said she never would?

Why is she so happy when you said her life would be miserable?

Why has she been so wonderful for our family when you told us to hide her away?

Why do I feel so proud when you said she would be an embarrassment to our family?

Why does everyone who knows her smile when she is around?

Why does she find delight in even the smallest of life events?

Why do I find myself wiping tears of joy from my eyes on this day, 20 years later?

Wednesday, June 01, 2016

Because PURPLE

Dean and I have  needed a new mattress for a couple of years, but it became most apparent after I finished chemotherapy. My back started to be quite a problem, especially in the mornings when I first got up, or after sitting for longer than a minute! Then in February when Angela was in the hospital I had a terrible night on one of the hospital parent beds, which landed me in the orthopedic office. It was discovered my entire spine is full of arthritis. Thank you Chemo, for the gift that just keeps on giving! 

Anyway, we kept saying we would get a new mattress when we sold the house, but neither of us wanted to spend thousands of dollars on a mattress! Last year we stayed at a Holiday Inn Express, and that mattress was the best thing I had slept on EVER. I researched that mattress, but couldn't bring myself to tell Dean the price. (over $2,000). Then I stumbled upon the mail-order mattress industry! After more research I had settled on one particular brand, and was just getting ready to purchase it when PURPLE was brought to my attention. 

I dug. I read. I compared thousands of reviews and watched video comparisons of the three main mail order mattresses. Finally, we settled on PURPLE. 

I placed the order on May 13th. I received an email with a video attached showing exactly how to unwrap the mattress when it arrives. On Youtube we had seen videos of other people opening their mattresses incorrectly and having a really tough time wrestling their mattress onto their beds, so we felt like we were well prepared. LOL 

The mattress shipped via UPS, and I was easily able to track it. Finally the UPS truck pulled up at  noon on May 31st. I raced to the door!

I knew from the UPS tracking this thing weighs 140 lbs, but I really needed a nap, and I really needed a nap on our new mattress! Only I'm not very patient and didn't feel like waiting until Dean got home from work. The company asks that you NOT try to move this by yourself. Note to self: I will never be able to commit a crime that involves hiding a 140 lb object! 

I tipped it over so it fell inside the door. 

Now what? I have to get it up 1/2 a flight of stairs! There are several handles on the packaging so I managed to stand the giant PURPLE thing up and get it onto the stairs. 

Getting it to the top of the steps was...well...interesting. But I am determined! 

Whew! That was TOUGH, and I needed a drink at that point. But the hardest part of getting it up the stairs was done, so there was no way I was quitting! Dragging that 140 lb thing to the bedroom wasn't easy either. 

Thankfully getting it onto the bed wasn't too difficult. 

One end of the packaging contains a zipper, and behind it is your tool for cutting through the packaging. Its a very sharp razor, so don't let your kids get hold of it. 

You also get some eye thingies, (do people really use those things?) and samples of the magic purple stuff that makes this mattress so special.

Cutting through the packaging is a breeze with the tool provided. It even cuts right through the zipper. 

Unfortunately this is where I discovered a problem.

Needless to say, a damp foam mattress isn't going to be staying in the house. Can you imagine the mold growing in there? 

I called customer service and the automated system said I was #7 in que, with the wait around 15 minutes. Finally at 22 minutes I was told I was next in line. Just a few more seconds and I was rolled another recording! This one said they are very busy and to please leave my name and number for a call back. Only I wasn't able leave a message because "this mailbox is no longer able to receive messages." because it was full. 


I hopped on their Facebook page and was very quickly able to connect with a customer service rep. who said with the Memorial Holiday weekend they were a bit behind. The rep instructed me to send an email to their customer service department describing the problem and they would send me out a new mattress immediately. I don't yet know how long that takes, or how they go about picking up the damp one, or who hauls the new one up the stairs because...yeah...I'm not really wanting to do that again! 

Anyway, the mattress, though a little damp, stayed on our bed because I was determined to sleep on that thing! 

The first thing I noticed was I can lay flat on my back and text people, which is something I can't normally do because my lower back hurts to bad. But on this mattress the support seems to be in all the right places. Because I was anxious about some things yesterday I didn't sleep very well last night. However, I didn't wake up this morning with my back hurting, OR my hips. Usually I have a really tough time getting out of bed in the morning, but not today! Dean did say his back hurt a little bit this morning, and it doesn't usually. I'm very curious to see how we sleep tonight!

Oh, I also got a free PURPLE seat cushion with my purchase, but its still in the box so I don't know what that's all about yet! LOL