Ten Months Home with Heidi

Ten months home today!

This month started off a little hard. We had nearly two weeks where I didn’t write anything new on the calendar. I was definitely feeling discouraged with our lack of progress. We had been working on some particular communication skills for several weeks and it was not connecting. Or if it did connect, she couldn’t express it. 

My oldest daughter, Anne, loves to read and shared a true story of a doctor who had a daughter born with cerebral palsy. Specialists told him she would likely never walk, talk, or be independent. The girl grew up and eventually held a position in the White House. She did everything “late” according to a typically developing child, but she was eventually successful. Anne told me how in the book, the family never stopped praying for the little girl to keep learning. 

It struck me that I had stopped praying for more Heidi miracles. She had made so much progress from her early days that my desperation for God’s help had waned. And my oldest daughter, without realizing it, encouraged me to keep praying for miracles. 

And God answered. I do feel the need to state that just because we pray for something, in faith, does not mean that prayer will be answered in the way or time we hope for. But when it is, it is imperative to give the credit where it is due. Yes, we do therapy multiple times a week and we work what feels like all day long with teaching and caring for Heidi. But I truly believe God is answering my prayers for my daughter. I do get discouraged and lack faith. I have always related so strongly to the scripture where the father is begging Jesus to heal his child and when Jesus questions him the father immediately cries out, “Lord I believe, help my unbelief!” (Mark 9:24)

The latter half of this month was full of Heidi miracles. They started off small. 

She gained confidence to go down the stairs easily. 

She started putting shoes on (though never her own). 

Leaving the house is always a struggle since Heidi will walk around in her sisters shoes and leave them in the most random places. 

Heidi played in the sand. For a child with sensory aversions this was huge!

Not only did she walk on the sand, she picked some up and rubbed it on her legs. She also started eating the sand so I had to intervene. 

Heidi is still the sweetest snuggler. 

(Ruth loves to have Heidi sit on her belly and bounce her. We all think it’s hilarious since they’re nearly the same size now!) 

Then all of a sudden she had a break through. She signed “all done” and said “duh” at the end of our meal Friday the 26 of June. You could see the intelligence in her eyes and that she truly understood. The next morning I was out for a bit and when I came back she went to her chair and wanted in. I started feeding her some yogurt and when I wasn’t fast enough she signed “more” and said “mah-mah”. She did this several times. When I started scraping the bottom of the container she signed “all done” and said “duh”. Since that day she has kept both those signs and words consistently, using them everyday!

She also pointed to the picture of herself in the swing to show me she wanted to swing. So even though I really needed to get to an appointment, you better believe I first pushed her on that swing! 

She also is comprehending and responding appropriately! Zoey asked if Heidi wanted to tick-tock (be swung upside down) and she literally ran to Zoey to be picked up and signed and said “more” over and over. We had been playing outside one day and I asked Heidi if she was ready to go back inside and she went right to the door. I asked if she had a stinky diaper and she waved her hand in front of her face like I do when I say “pee-yew!” 

She learned the sign “help me”. And “jump”. And is combining more + jump. 

She even colored for the first time ever! I was so excited I texted her therapists! 

Before I paint the rosiest image, please understand in the midst of the joy there is still so much that is hard. 

Our family loves creek stomping more than anything in the summer. And Heidi just absolutely hates it. She cries, clings, and cries some more every time we go. It’s so hard to have the most joyous part of our summer be changed into something stressful (for me). I don’t want to deprive our other kids of their favorite activity but I also don’t want to push Heidi too much and cause extra anxiety in her life. 

(My sister, Audrey, holding Heidi the last time we took her to a creek.) 

In fact, we were planning to go today but Heidi seemed a bit “off” yesterday so we didn’t go. I knew it would be too much for her. 

We learned that Heidi hates, hates, hates fireworks. She scream/cried so much at my sister’s house on the Fourth of July that when left. She scream/cried so much at my in-laws that one of the other girls took her inside. Fireworks are kind of a big deal in our family. We are learning that they are sensory overload for her, and we’re trying to navigate our joys with her terrors. We don’t have answers. 

She still cries at nearly every dinner. She typically does well at breakfast and lunch. However, dinner is currently hard. We’ve started letting her either sit on my lap to eat or even just get down from the table to play. This is something I would never (or very very rarely) allow any of our children to do, but we are learning to parent her a little differently. 

I hadn’t realized how effectively I have social distanced Heidi until she finally had to go to the doctor this past week. I haven’t taken her anywhere that masks are required and she had never seen me wear one. She was freaked out when a nurse wearing a mask took her temperature, then she hated that I had one on, then she fussed for the doctor with his mask. To make matters worse, I absolutely had to stop at a store with her. As soon as we walked in the door the guy who greeted us had a mask on and she started sobbing. She buried her head in my shoulder and turned her face away, only to see a customer with a mask on. It was quite the horrible trip and there was nothing I could do about it. I was never so glad to leave a store as I was that day. 

Yet through it all, Heidi is so brave. She has come so far and truly has bonded, attached to her family, and trusts us to care for her. 

She is truly, such a joy!

(Signing jump)

Happy 10 months home, Heidi! We love you! 

20/20 Vision

I saw many people at the beginning of the year talking about how 2020 would be their year of “clear vision” or “perfect vision”. And many of those same people (along with the rest of the less witty population) lament that 2020 was not what they envisioned (pun intended).  

We chose the word gratitude to focus on. It feels more appropriate than ever as we deal with shut downs and Covid-19 and unexpected surgeries and school uncertainties. 

The longer these strange times go on, the more closely I am looking for God to reveal himself to me in my everyday life.

And the more I seek, the more I find. 

I saw him in the rainbow tonight. 

I saw him in this sunset last week. 

I saw him in the beauty of this moment. 

I saw him in her joy. 

I saw him over and over again in her victories and miracles. 

I saw him in the sweetness of these sisters. 

I saw him in the unique combination of silliness and maturity of my oldest. 

I saw him in the tenderness and patience of my second oldest. 

My friends, if you are looking with 20/20 vision you will find God all around you. He is moving, he is here, he is still doing miracles. 

Isaiah 7:14 (NLT) All right then, the Lord himself will give you the sign. Look! The virgin will conceive a child! She will give birth to a son and will call him Immanuel (which means ‘God is with us’).

God with us. Yes. He is with us. 

He is in my conversations, a gift received and one given, he is in an unexpected kindness, he is in impromptu deep spiritual discussions with someone I haven’t seen in years. 

Are you looking? Have you seen him? The world may appear to be crumbling but Satan has not won. Christ will have the ultimate victory and I am glad to be living in these days. I am glad to be raising my daughters in this climate. What strength and faith they have the opportunity to grow during this time. 

I hope you all have taken the chance to look at your life and what is truly important and that you’ve been able to seek God wholeheartedly. I’ve seen my little daughter participate in a Zoom Bible study with her penpal and her friends. It’s incredible. My oldest daughter was inspired to start her own study and she’s put forth effort to study the lives of missionaries and talk about them with her friends. These are 9 to 13 year old girls. Yes. There is much hope for the future. 

Jeremiah 29:13 You will seek me and find me when you seek me with all your heart.

Have you found him? 

Little Girls Room Reno

For the past several years we have had a “beds room” and a “dressing room”. As the oldest girls got older they started having small complaints about the messes little girls make and other such things. After much deliberation I decided perhaps the time has come to separate them. 

(Before)

The oldest three stayed in the beds room and we moved the little girls to the dressing room (Heidi is still in the nursery but we will likely move her to the littles room at some point). 

(Before/During)

One of the most enjoyable things about making this move was letting the girls choose paint and patterns to make the room “theirs”. Carrie and Ruthie chose a rainbow room. Carrie’s favorite color is purple so she requested a purple wall and Ruth likes blue so she chose a blue wall. The room had been grey before so we left the other walls that color. 

(After!)

We love the finished room! 

I had found rainbow curtains I liked but they seemed so expensive. When I ordered the comforter sets for the girls these sheets came with it. My kids are strange and never use a sheet so I asked my mom to make them into curtains! She went above and beyond and painted the ribbons and gathered them to match the pattern on the comforter. 

They are really enjoying having their own space to listen to cds, play with their dolls, read, and rest. It’s gone better than I expected. They sleep together on the top bunk at night and Ruth naps alone on the bottom bunk. 

Double curtains to help keep out the light in the morning. 

Nine Months Home with Heidi

Heidi, sweet Heidi. Another month home. Another month full of miracles and challenges. 

Heidi chomped some peanuts, goldfish and other crunchy things this month!

She made the “vvv” sound which was new for her. 

(She likes when daddy takes her on wagon rides to the animals and really is interested in what Chili Pepper the pig is up to!) 

We have been working a lot on sign language and she’s mostly resistant as she still struggles to use her hands. However, she loves little hand games and when she wanted us to do “round and round the garden” she moves her hand in a circle. She even tickled her own armpit and laughed hilariously. 

She signed water in her own way (tapped one finger to her mouth). She also signed more and jump. She has only done these things upon request and after we’ve just shown them to her, and when we’re withholding what she wants. For example: she loves for me to jump her on the bed and I wouldn’t bounce her again until she showed me “jump”. She is, after all, a 2-year-old and can be quite stubborn! I was very surprised after breakfast one morning when Caroline said, “Heidi, are you all done?” And she signed “all done” without Caroline doing the sign. 

I believe there is a lot of processing going on in her little brain and sometimes she is slow to react or respond. But not always! If you tell her “no” she’s quick to throw herself on the ground and kick her feet in a fit, or give you a side eye, or growl in her anger. 

(That side eye!!)

She is (usually) good about instantly repeating “mama” and “dada”. One disappointing thing from this month is that she has seemed to lose a lot of words. Other than our names she has never kept a word for more than a week. She sometimes will repeat a word she hears, such as cheese, doll, etc but she can’t get the word again if asked. She did have “baby” for about a week, but she can no longer say it. 

We tried several sensory things this month that have mostly been fails in Heidi’s book. She hates the baby pool. She despised finger painting. She was angry about shaving cream play. And yet. If she can come back to the activity on her own terms she will engage to a small degree. After she freaked out about the finger paint and she calmed down she did eventually pick up a paintbrush and wave it around. She also picked up the can of shaving cream to shake and throw. She didn’t cry when a small amount got on her hand. 

(Hated it)

(Hated it)

(Hated it! She was so mad at me for this she wouldn’t even look at me for 5 minutes.)

I have started work to desensitize her face to wearing glasses as she will likely get them in August at her appointment. Since she loves to swing I put the glasses on her. At first she threw them off but eventually she left them on for several minutes of swinging. 

(Throwing them off)

(Now the coolest little chick!)

We had some good and bad days with eating also. She fed herself the ice cream cone while holding it herself but only one lick, then handed it back to me. But she did it several times. She was picking food up with her fingers. The one meal she fed herself a whole piece of toast that was cut into small pieces! She fed herself bites of a sandwich, a plate of noodles, popcorn, a chicken nugget bite, and more. Most of the time I gently tap her hand to remind her to pick up what’s on her tray and she does it. She has been doing well with the spoon as well. I can usually get her to feed herself 10 bites per meal which is a big accomplishment for her. And actually, sometimes she does better for Trent than for me. Another daddy’s girl, go figure! 

We have had many bad evening meals and we’re trying to find a solution. We’ve been swinging her before dinner and for awhile that seemed to help. Unfortunately, that stopped working and she would be in her chair for a minute and start crying. She would go to her room to help calm her and then she would usually be okay after that. We tried putting her in her room before even going to the table and that sort of worked. It usually isn’t a problem at any other meal, just dinner. I do think it could be too loud at dinner with everyone trying to talk about their day at once. Tonight we had everyone talk more quietly and that actually seemed like to help. So, if it continues to work it looks like I’ll come out a winner with quieter meals, too!

(She loved all of Brandon’s tattoos!)

For a few weeks we worked on pointing to eyes. She didn’t seem to get it until baby Cai was here and she automatically pointed to his beautiful brown eyes. She also pointed to my eyes! 

(Heidi & Cai! The cutest babies!!)

She learned how to high-5 in one day. Normally it takes us weeks to teach her a new thing so the fact that she got it and kept the understanding amazed all of us! 

(She started liking our neighbor boy and he is SO proud. It’s kind of one of the sweetest things to see a new side of him that Heidi brings out!)

She mimicked saying “ahhh!” After taking a refreshing drink of cold water. 

(Obviously Heidi loves her cousin, Zoey!)

(And Emma) 

We would like to see continued growth in her ability to communicate with us. She doesn’t typically initiate her desires in a way that is understandable to most people. We know if she’s at the back door crying she wants to go outside to swing. We added a photo of Heidi in a swing to the door and point to it and say, “Does Heidi want to swing?” And take her out. The hope is that she will eventually take us to the photo to show us she wants to swing. I’m planning to add several other pictures around the house to help her learn to communicate her wants/needs. 

It really does seem like Heidi is understanding us more everyday. She is loving, affectionate, and so very silly. She still has the most contagious laugh I’ve ever heard. She has a light in her eyes and joy in her heart. Heidi is a bit like unlocking a treasure. Each time we think we’ve got it she surprises us with a new complication. Yet each portion that is revealed brings deep joy to all of us. 

Heidi continues to be our brave girl. We’re forever grateful that she no longer has to be brave alone; we’re here to fight for her and with her and cheer her on endlessly. We’re the lucky ones to have her in our lives. 

Happy 9 months home, Heidi! We love you!