Happenings since then, or our Christmas letter early

Sorry it's taken me so long to post again! So many pictures and events have happened that there's no way to mention them all...I've found Facebook to be easy and quick, and I can do it from my phone which is easier for me because of my vision so that's what I've used most.

It's been difficult to accept the fact that three of the children have been diagnosed with autism (also called Autism Spectrum Disorder/ASD). We can see it, we acknowledge it, we love them just the same. I should have known with Timmy (dx one year ago), because he has very little language and is so fascinated with gadgets and toys with wheels. And the repetitive head flipping...self hitting...a peripheral player...looking up instead of at us (I thought because he's almost blind)...but he's always been so affectionate though--with anybody--which turns out is also a social problem. I figure the affection gene comes with the Down syndrome, although not all kids with DS/ASD are that affectionate with strangers. He does reach out and touch people as we walk down halls, I do think that's partly because of his vision impairment.

Remember, it's now at least one out of ten with DS that also have ASD. The Easter Seals evaluation team said that for us, since they are adopted, it was just the luck of the draw. It is common in biological siblings that if one has autism, a sibling may also have it. I believe there must be something in the genetic makeup that makes for an easier trigger of autism in kids with Down syndrome. We've loved them all! It's not a lack of love, that's for sure! It really is rewarding to see their individual interests and learn what makes them happy. Communication continues to be the toughest part with the two who are nonverbal.

I still wish and hope for a service dog, especially for Ella, who demonstrates the most classic autism. We moved to a one-level house in September. Just having the dog on the day of transition would have been and incredible blessing! I think a dog would be good for all of the family.

So what about Lucy? Our youngest has some typical compulsive behaviors, and some things I believe she has learned from Joel. She likes to watch certain movies at certain times of the day. And she likes acting movies out. They actually have several scenes in movies where they have them all coreographed, who plays which part. For instance in "Tangled", Joel plays Mother G and Lucy plays Rapunzel during the song "Mother Knows Best". It's really fun to watch!

Lucy is quick, we'd consider her "high functioning". But she's also pretty hyperactive. It's not just that we're getting older, it's definitely more than that, we can tell the difference because she is our eleventh child. And she can be VERY oppositional. But overall, she is beautiful, bright and affectionate! She has a special friend in "Grandma Neat", who works with her at home and at church. "Grandpa and Grandma Gibson", a special couple from church, are also very sweet to our kids.

Joel has been blessed to not be hospitalized for a good long time now! Hurray!!! Whew! His weight has been a concern as he's continued to gain but not grow taller. His shoe size hasn't changed in years. The endocrinologist had a hand wrist scan done on Joel and the results were that "Joel has already had a growth spurt (when?) and he probably won't grown much more because his plates are closing."

Joel and Tim continue to have the supervision of a nurse overnight (12am-8am) because of their respective health conditions and machines they are hooked up to at night. We don't know how long it will continue because of the changes in healthcare in our government. Having this care is so helpful and allows us to sleep at night without worrying about them. Linda does cares during the week and Eva on weekends. They're great!

I won't lie. The time that has elapsed since Joel's last Mitral valve replacement in Feb 2011 has been hard for us. Our schedules are much more regimented with very little time for play. We cherish the little things, and hope for understanding from those who know us and work with the children.

We do have personal assistance help from our daughter Mikelle and Juanita for designated hours on varying days during times when all four kids are home. This help is necessary and a huge blessing! (Can you imagine cooking supper with little ones surrounding your feet and opening the oven while others are getting into things elsewhere?) I know there are some out there with larger families and more kids with special needs, but ours are like quadruplet toddlers, with multiple needs...our other kids are grown and away...and I hate to admit it but we're not spring chickens anymore, lol.

Over the past year we have gone to a lawyer and made a legal will, living wills, assigned guardians and had a special needs trust fund written for these kids. Now we just need to be able to put money into that trust for them, so that when we are gone they can be cared for in the manner they're accustomed to.

We still need to sell the old house.

I opened an Etsy shop in May of this year. www.etsy.com/shop/doloresandcompany. I make peasant dresses for little girls. There are several to choose from on the site and I take custom orders. The custom orders are actually going pretty well. Unfortunately, once they sell they no longer show up on the site so people don't see them and can't place custom orders from them. I find posting dresses on facebook helps. My motivation to do this business? I love to sew, it gives me a creative outlet when all the kids are in school. I wanted to earn money so that I could donate little bits here and there to help other children with special needs come home to families; this cause is dear to my heart. And I wanted to provide some modest alternatives to what is available for little girls to wear. Mike and the family helped to build a beautiful dress studio for me--such a gift of love! I've never had an actual sewing room before. This one is perfect because it has a view into the family room and all the way into the kitchen, as well as outside to the back yard!

Milly and her children came to visit and stayed many weeks to help us get ready and move into our newer home. Her help was invaluable! Janina helped us get the old house/new house fixed up, sacrificing many, many hours over the year on these projects. Lora, Gabe and friends, also helped us for several weeks during their summer break. Matt Glass has worked for us in the yard. Ron helped and continues to help with the exterior and yard at the old house. Thanks to the missionaries as well, and ward members for helping with the actual moving day! It's close to being all be finished, but you know how life goes on!

At this writing, Janina is in the Marshall Islands with her new baby daughter that she and Marty have just adopted. The whole family was there for a while, Janina and her two youngest will be home this weekend! She has taken such beautiful pictures there I could fill up my blog with them! Baby Miriam is a gorgeous, plump little brown baby with lots of thick, black hair and big, dark eyes. She reminds me a lot of her sister Genevieve when she was little. We're so excited to meet her! As I have been with each of our grandchildren. I have always wished we could adopt an international waiting child, and Janina is doing it! I'm so proud of her and Marty for taking this leap of faith.

I'm looking forward to Thanksgiving here this year, and hopefully all the kids here for Christmas. Some great things to look forward to! I'm also praying for good health for my aging father and his wife Helena. God bless us, every one!

Love,
Dolores

My thoughts on the Stewardship of Mothers

 
 In my circle of "friends", there are many women who are praying for their husband's heart to soften toward the idea of adding another child to their family.

In my years of experience and observation, I've never really known of many husbands to go around saying to their wives, "Oh honey, I think we should do this, let's please add another child or two or three to our family!" 

Not even among the good and Godly men.

Since the beginning of time, woman has been instrumental in bringing about the family of man. When Adam and Eve were sent from the garden out into the world, Eve was told to bring forth children and Adam was told to work and provide for them.

Traditionally, as God ordained, the woman is the mother, the one who spends most of her time with the children, nurturing, feeding, washing and teaching them.   
Traditionally, as God ordained, the father is the one who goes to work and provides for his family... thus naturally causing him some alarm at the thought of providing for more children.

Both parents are giving service which is love, both interact with their children and of course both parents are responsible for their children's moral and religious example and training until they are grown (and after that we keep on loving and praying for them).

But here is a thought whispered gently to me by the Spirit: When it comes to knowing when it's time to add another child, it is the Mother's stewardship. It is a spiritual, God-given gift to women.

It's natural for a woman to be the one who wants another child. 

Heavenly Father's desire for his children is for them to have loving families.

Of course we must use wisdom. Heavenly Father doesn't expect us to run faster than we are able. But He does expect us to grow.

Women should pray for their husbands and do all they can to bless their lives. Respect and support them in their callings and stewardships. Never say gossipy things--never ever on facebook or other social networking methods! Be trustworthy with his heart.  Be cheerful and find time to go out alone together with your husband once a week.

Men should pray for their wives and respect their callings and stewardships. Ask your Father in Heaven in humble and sincere prayer, in your own words and on your knees, to give you instruction about how your family should be grown. Ask a specific question and end your prayer in the name of Jesus Christ. Then wait and listen for peace, warmth, or joy. It may not be immediate but if it's right, you will receive an answer in a way you will understand.

The Lord provides for his children. I know this. If you're doing what's right, He will bless you.

I say these things in the name of Jesus Christ, amen.

Here is a talk you may find helpful, by President Hinckley, titled: "These, Our Little Ones" 

Breakfast with Garrett

During my recent trip to New England to visit Milly, Ben and their children, I had several occasions to spend some quality time with my almost three-year-old grandson, Garrett.


One morning Garrett and I were having a quiet breakfast together at his kitchen table. I sliced some oranges for him and after he'd tasted them he said, "They're kinda tart!"
I chuckled and cleared my throat, not used to hearing such eloquent conversation from toddlers. 
"What did you say?" Garrett asked.
"Who lives in a pineapple under the sea?" I responded.
"No, what did you say after that?" Garrett insisted.
"SpongeBob SquarePants!" I said.
"And then what did you say?"
"Absorbent and yellow and porous is he!"
"And what did you say after that?"
"SpongeBob SquarePants!"
"And then what did you say?"
SpongeBob SquarePants, SpongeBob SquarePants, SpongeBob SquarePants, SpongeBob-Square-PANTS!"
......pause......
Garrett asked again, "What did you say?"
I answered, "I'm just thinking, Garrett. Sometimes it's good to just think."
I opened my mouth to say something else and he quickly said, "Think some more."
 

I am thankful to be a mother

I've felt for many years that my mission in life is being a mother. I am a mother to my seven biological children who are now grown (ages 21-33 at this moment), and to our four young children with Down syndrome (currently ages 3-11).

Will I ever be finished having children? No. I am--happily--what some term "an eternal mother". Babies and little ones will always be a part of my life in some way, including grandchildren.

Who do I love best? I love each of them, they are each so dear to my heart, whether born of my body or adopted, they are all my beloved children. I believe it is that way with our Father in Heaven; He loves each of us.

Why am I posting this? Because I feel the need to. One never knows exactly what the future holds. I want you to know of my love. I want my children to feel my embrace: even though I may not be near you or be able to give you a hug in person; many of you are now grown and live far away and I don't see you as often as I wish I could. The swellings of my heart are intense.

What changes will come about in our family in the future? I don't know. To my children: I will always be your mother. I love you no matter what! 

Will I be mother to additional children in the future? I don't know. But those of you who know me, know that I'm pretty tenacious. I see the suffering of little children who are waiting for mothers and fathers... and once our eyes are opened, we are responsible to act. I don't like to put limits on what God can ask of me. He is the great "mission president", the Father of all, the one who knows what is best. I want what He wants for my life. For our lives.

I have a testimony of Jesus Christ. I am so thankful that He loves us, atoned for us and overcame the world. This gives me strength and hope! Three sentences there, but they speak volumes for how I view life. The Savior taught us to love one another. He said, "Suffer the little children to come unto me and forbid them not, for of such is the kingdom of Heaven." And He said, "For inasmuch as ye have done it unto one of the least of these, ye have done it unto me."

I have a birthday coming in a couple of weeks. I haven't paid much attention to my chronological age because my life is different than most in my peer group and age doesn't figure. I recently did the math. It turns out I thought I was a year older than I really was all of this past year, so now I get to be that age all over again! I get another year, what a miracle! ;o)

Love and blessing to you all!
Dolores

In Memory of Mama

Three years ago on the 11th of April, my mother passed away because of cancer. She'd been sick since that January, and had gradually stopped being able to eat very much. In March the surgeon went in to take out her gall bladder. The surgeon found that there was cancer and it had spread throughout her body. A rare cancer of the gall bladder, which we learned is a commonality between Jews and Native Americans. Native American heritage is in her geneology.

My vibrant Mama was losing abilities so quickly, we were all in shock and denial. After two weeks she came home on hospice...she had one fair day on Thursday when several of us kids gathered and sang to her and she was awake for most of that... then she passed away on Saturday morning, the day before Easter that year.

Losing Mama was very hard. Three years later, remembering Mama during all of her healthy years is still a joy. She was a loving person, always hugging and bringing into her embrace her kids, grandkids, great-grandkids and many, many other people.  I know she's in a wonderful place now, busily helping in the Lord's work. I often feel her influence when I'm down or maybe not being as patient as I should be. Mama was a wonderful example. I love you, Mama!

Joel's "trip in truck"

Some of you have asked me how Joel is doing. It's kind of hard to explain. He is more medically fragile than before, ever since he was in Congestive heart failure in Feb 2011 and had to have a larger artificial valve put in. His lungs, asthma and heart issues keep him from exercising very much, his immature chewing ability and extremely limited food choices add to his weight problem; it's a vicious cycle. He isn't growing in height, his weight goes up and down only a little, some is water weight. Cold and hot weather trigger his problems as do exertion and illness.

Joel was in crisis Friday by the time I arrived home from taking Timmy to the dentist, his PA alerted me by text moments before I got there. As the evening progressed he got worse and was eventually ambulanced to Children's from our local hospital (again), where we were finally able to settled in at 5:00 am to sleep. Joel needed a tune-up, and was then sent home again. Easter Sunday was necessarily a day of rest.

Here's the way it seems, the way I interpret what the doctors said: The new normal for Joel's lungs is abnormal; his heart has another stenosis, we learned about that last month. He's on oxygen on and off in the days, always at night at varying liters, along with his bipap.

There are days when I feel like sobbing in great bursts but I mustn't. I know that Heavenly Father knows the number of Joel's days and what he needs to accomplish here. I KNOW that, I have a testimony of it, the Holy Ghost has born witness of this to me. But it's very hard to see your child suffer repeatedly, and never know when it will strike again. He cries out in his exhausted airy voice when they're struggling to get an IV into his weary veins again, and quotes, "Gimme a chance!" or "It not fair!" and I'm standing there helping to hold him. I wish I could change things for him. I REALLY do!

Oh my Joel boy, little Mister, how we love you!

Since October in one post

We enjoyed Thanksgiving and Christmas, praise the Lord! Since Christmas, Joel has had illnesses off and on (including an itchy rash we've tried everything we and the doctors can think of for) and was admitted to Children's by ambulance for breathing problems in March. It turned out to be pneumonia and some congestive heart failure (he has a new stenosis in a different valve, not the artificial one). With antibiotics, IV Lasix, and lots of prayers, he was able to be discharged in four days, a record!

Timmy has a few words that he can say clearly now. He likes to have the iPad with him at all times because he can see the screen up close. Much of the time he looks up at the ceiling instead of at us, we're afraid his vision is worse than they think...he'll wear his glasses at school and for short periods of time at home, but they usually become broken at home because of the younger kids : ( and we notice that he looks over the lenses most of the time. I hope to try the Mira-Flex glasses with him the next time around.

Timmy is a sweet boy and loves people. The challenges we have with him are trying to get him to eat--he's still fed by g-tube, is very thin and has pretty severe oral aversion. Tim won't allow us to brush his teeth and so they're awful. The dental hygienist explained to me today, that because he doesn't eat, the stuff on his teeth isn't knocked off even a little by the food. They tried cleaning his teeth without anesthesia today and thought better of it quickly. This is one strong, wiry little guy! I fear being judged because of Timmy's dental state (they'll only clean them once a year under anesthesia), but I have to say, "unless you've walked a mile in my shoes..." Timmy is a lovable and stubborn little boy!

Ella has new glasses! We went for the Mira-Flex type that are all bendy rubber-- so far so good. She's wearing them for a little while each day. We get some eye contact from Ella especially when singing songs to her (and when she looks in the mirror she babbles) and she still participates in music, likes to flip pages in books and loves food. This is one kid who knows how to make you feel good about making dinner!

Our efforts to keep gluten away from her are going well except she will still sometimes grab something from someone else and stuff in a mouthful before we can get to her. The numbers were much lower at her lab and she's had a major growth spurt. Potty training on a schedule is moving right along, but she doesn't let us know she needs to go as she has no language except the word "no!" and only uses the sign for "more". Ella is affectionate to the people she knows, I love having her come sit beside me like she does, even at the dinner table, she'll move her chair as close as she can to mine, so that our arms are against each other.

We know when Ella doesn't like something--believe me! She still struggles with transitions and going to new places, having new experiences outside of our home. On the days that we have to take her to appointments, we come home physically exhausted from chasing, holding and helping her calm down. We also know when Ella DOES like something, because she shows it with her whole being. She smiles, and laughs, and wiggles and shares her joy. How can you resist a child like that?

Lucy is as cute as can be and as active as they come! She loves to be involved in everything. She loves to draw on everything (another budding artist), wrestle with everyone, take things out of drawers, flush things down toilets, she's very impulsive, etc. etc, you get the picture! The challenge is to keep her busy with a job to do. Little down time for us ;o).

Lucy can speak in short sentences and amazes us daily. She likes to be in charge and has already taken the role of older sister with two of the kids. 

We expect great things from this little girl!

We have a new granddaughter!!! Vivian Ophelia Ramsey was born to our daughter Milly and her husband, Ben, on March 19th, 2012. A beautiful baby girl who will be sister to our grandson Garrett, almost 3. I will get to go visit them this month, the Lord willing. I can't wait!

As far as selling this house and buying or building another, we're still working on that, but we can't seem to get ahead...things keep happening. So much to do, so little time. Love you!