A Favorite Book/A Favorite Author

     On October 30, this past week, a woman I greatly admired and an author whom I loved, went to be with the Lord.  It was a sudden death, so hard for those left behind, and she left behind a loving husband and 12 beautiful children.  Many of you out there may of already know about her death and loved Barbara as much as I did.  Though I never met in her person, we communicated over email and we considered each other "soul sisters" (her words, not mine :) Above is one of her first books and probably my favorite.  It's such an encouragement and inspiration to mothers, plus her testimony and story is weaved throughout the book, which makes it so interesting to read. 
     I first heard about Barbara almost 4 years ago when my #9 child was born with "a little something extra."  I was in shock after receiving the Down Syndrome diagnosis and began to pour over books about DS and about families with these special children.  She had written a chapter in a book entitled "Gifts."  There she told how her #8 child, a boy, was born with DS and then her and her husband went on to adopt 3 more sons over a period of about 8 years with DS as well.  I was marveled.  I ordered other books she had written and discovered her blog. I finally got the courage to email her and to my amazement she emailed me back pretty quickly and answered just about all my questions in a long personal email.  We then, over the years, emailed back and forth and she even posted some of my blog posts on DS in her blog.  You've probably noticed her blog banner at the right bottom corner of my blog.  She was very political, pro-life and out spoken.  My husband and older children also loved to read her blog.  I will miss her so much.  Just knowing she was an email away if I had a pondering questions and I looked so forward to meeting her in person one day.  I know now it will be in heaven and I know she is in a much better place.  But please be in prayer for her precious husband and children.  This has all made me realize how short and uncertain life is.......don't take anyone for granted.
     

Another School Year Has Begun

Starting my 17th year of homeschooling......

My oldest 3 are all settled in their respective colleges and their classes have begun.  We began our homeschool last week and our Classical Conversations classes this week.  Matthew will start his special ed preschool after labor day.  We are so blessed to have gotten him into a small preschool that meets in a Baptist church that is 80% kids with Down Syndrome.  He will only have 7 other children his age in his class with 2 teachers.  It is a precious school that has very specific therapies for children with DS and is very language rich.  They also teach a good bit of sign language, which Matthew is so eager to learn and I have taught him about all I know.  He babbles all the time now, sometimes very loudly, and really wants to communicate.  I am so excited about him starting.  I feel like he has gotten into Harvard or something : )

Anyway, our homeschool is now in full swing. I have 5 different grades this year, as you can tell from the picture. We are again doing Classical Conversations for the second year.  We really enjoyed the structure it gave us last year and our classes we attend on Monday with the CC community.  It is also so very helpful for high school.  
There are a few things that I've changed this year......
All the kids, except one, are doing Saxon math.  I purchased their CD's that are used on the computer.  This helps so much because they each can watch their lesson in the morning and get started on their math.  Then they can watch the lady do the problems that they miss.  I also bought them each a storage box and placed good literature that is age/grade appropriate for them each to read through out the school year.  Most of my children are strong readers and love to read, but this gives me some structure for what they are reading.  Because we did Sonlight curriculum for so many years, I have a great library of children's literature.  Our schedule is similar to the one we had last year. (It's under one of my homeschooling posts) My older ones like to get up early and get going by 7:30 but we don't officially start up school with me until 9 and then are done by 1pm.  Afternoons are free for reading, running errands and extracurriculars......soccer, tennis, ballet, violin and piano.  
Happy New School Year!

Matthew and Patrick

Patrick taking care of Matthew : )


Now I have 2 toddlers!  My babies are both walking around everywhere so that means I'm chasing them around everywhere!  It's amazing, because the same week that Patrick (now 14 months) began walking nonstop, was the same week that Matthew took off as well.  Matthew had taken steps independently right before his 3rd birthday and was walking if we held one of his hands, but he had still mostly crawled everywhere.  Well now finally, at 3 years and 5 months, he is walking all the time.  Whew, what a relief!  He has small orthotics (kind of like Sure-Steps) but now he is even walking at times with no orthotics or shoes on.  I'm hoping that he will eventually not need the orthotics as his ankle strength grows.  


Matthew has been in a special-ed preschool class since December and is loving it.  He is learning a lot of sign language and also saying more words.  It's a big help to me as well, because I now have more time to devote to homeschooling the other children.  He loves going too.


Patrick is such a joy and of course seems so "advanced" compared to Matthew.  People warned me that this would happen when you have a Down Syndrome or other special needs child and then have a typical child.  The younger, typical child seems like a genius or whiz-kid.  It's crazy how we as parents forget how fast our little ones can learn and how fast they grow-up. 


 God knew that Matthew would need Patrick.  He motivates Matthew already and they are becoming great buddies, ie"partners in crime" : )I know as time goes on, that Matthew will need Patrick more and more and Patrick will care for him and protect him.  I love watching them together!  It's a busy, busy time but I wouldn't trade it for anything!

God Gave Me Mattie To Pull Me Out of Myself

My special little guy just turned 3 years old this past week....so hard to believe how much I have changed in the past 3 years.  And so amazing how fast 3 years can go by.  Matthew is so unique, yet in so many ways just like my other children.  It just takes him a little longer to do and learn everything.  So of course I am learning patience, but mostly this little guy has helped me learn boldness.  God has used him to "pull me out of myself." If it weren't for Mattie, I wouldn't of met SO many people.  I wouldn't of had 4 therapists in my home every week, become a part of my local DS support group, started this blog, gone to numerous doctor appointments and met many health professionals, and the list could go on. But the wonderful thing is that he helps me on a daily basis talk and interact with people that I probably would never even glance at if it weren't for him.  You see, Mattie is social and never meets a stranger, especially men strangers : ) He loves older men the most and if we go somewhere, like Home Depot, where there are tons of men, he is reaching out to them, smiling at them and wanting them to hold him.  Believe it or not, I'm kind of  a shy and to myself kind of person, but I'm changing and Mattie is helping for sure.  God doesn't give us what we expect in life, but what we need.  God knew that I needed him!

My mom and Mattie on the Triangle Down Syndrome float in the Raleigh Christmas parade this past week.  He did so good, waving to everyone and being his social, charming self.

#9's Adjustment to #10

My cute little #9 still looks happy, right?

Well, Mattie is not the baby anymore, but I really don't think he has missed a beat.  He's not a Mama's boy at this point in his life, so I think that has made the transition a little smoother for me and him.  He is a real Daddy's boy.  In fact, he loves all men, especially older men.  When we go to the store or wherever, he reaches out and waves to all the men.  He really wants them to hold him and gets kind of sad when some men just ignore him.  He has no stranger anxiety.  Maybe that just comes with the Down Syndrome.  He also has yet to show any jealousy towards the baby.  At first he was very shy, like almost afraid of him, especially when Patrick would cry his newborn cry.  Now he is more interested in him and likes to touch him and give him his pacifier.  Whenever he sees me nursing him, which is just about all the time, Mattie does his little eating sign.  It's so cute!  Overall, I think he is adjusting just fine, but sometimes I'm sad because I don't get to spend as much time with him just playing.  He has had to grow up some and get more independent, which basically means just making messes and getting into trouble.  All the kids have been watching him more and playing outside with him a lot.  I'm so glad I have all of them around and that they are not at school all day, because I need the help. This is the first time that I have had 2 non-walkers.  It's quite a challenge, but hopefully Mattie will be walking soon.  

I've been sleeping a good bit later since Patrick was born.  One morning my husband went in later than usual to get Mattie out of bed and found MK keeping him company and keeping him happy so Mama could sleep.  Ron thought they were so cute together and snapped this pic with his cell phone : )

My Little Trooper

Before surgery watching TV in his little hospital gown~

Today my special little guy had surgery.  He had an abdominal hernia repaired plus had to have one of his testicles pulled down.  He did so well and is home now, a little drugged-up still, but pretty much his cuddly self.  This is his 3rd hospital admission since birth.  I know that's probably not much for a DS child, but it does seem like a lot compared to my other children.  He is always so good and such a hit.  The nurses all wanted to keep or adopt him : ) He loved the doctors too and had no stranger anxiety.  He's so friendly and peaceful.  He even gave his therapeutic hugs to the nurses.  

Anyway, I'm so glad this surgery is done before the baby is born and we really don't for see him having any other hospital visits in the near future.  He has great ears and eyes.  Now, if we could just get him walking!  But I'm being patient and am so glad he is talking and signing more.  I'm kind of sad realizing he won't be my "baby" for too much longer.  

Mattie in the recovery room, all "drunk" from the anesthesia.

My Little Guy Turns 2.... Plus A Birth Story

     My little guy is two years old today and I can't believe it!  Time sure does fly and things sure have changed since he was born.  God has so changed my heart, my perspective and made my life so very full and blessed.
     Matthew Henry, Mattie as we call him, was born with an extra chromosome, much to my surprise.  I had had an uneventful pregnancy and a "normal" level 2 sonogram.  Nothing seemed out of the ordinary and since he was the tie-breaker (at that point we had 4 girls and 4 boys) we didn't even find out the gender.  He was due on Thanksgiving, so my doctor agreed to induce me a week early so I could be back home and ready to cook the big Thanksgiving meal...crazy huh?  So we went in early the morning of the 20th and had a long induction with 12 family members at the hospital waiting for the arrival of #9.  By late afternoon, we knew he was coming soon and after 2 pushes, he was out.  I heard my husband yell out "it's a boy" and that is when things began to get a little strange.  They didn't let me hold him but took him right to the warmer.  I heard him crying, so I felt like everything was fine, but there were a bunch of nurses around him and the room seemed very quiet and solemn all of sudden.  I looked over at him and thought he was so cute but he did seem paler than my other babies.  Next thing I knew, two people with street clothes on came in and were checking him out.  I asked who they were and the nurses said "neonatologists."  I thought, oh they are just being so extra careful because I'm over 40.  Then they let all my family in (literally 12 of them) as I was just finishing delivering the placenta.  It was then I looked over at my husband and he was sitting down looking very pale.......he knew, God had told him 2 weeks before, but more on that later.  All the family "oohed and awwed" and then I finally got to hold him.  At that point, I looked closely at his eyes and asked Ron, "does he look different to you?"  Ron didn't answer.  Then the nurses showed all my family out and told me to get up and go the bathroom.  While I was in the bathroom, I heard the room get very quiet and a male doctor's voice speaking to my husband.  I knew at the moment and felt like my world was falling apart.  "God no.  Me?  I have 8 children already and I homeschool!  I can't do this!"  I was sobbing in the bathroom.  I came out and saw the doctor holding my baby.  He sat us down and told us that Matthew had several DS markers and that he was 90% sure he had an extra 21st chomosome.  He was very encouraging and nice about it, but I felt that I was in a dream and that this must be wrong.  Matthew looked perfect to me.  I just sat there and cried.
     Ron was taking it all so well and actually smiling!  My two older boys came in and we told them.  They sobbed along with me (that was so hard seeing two big teenage boys cry over their baby brother).  Everyone else had left the hospital and Ron was prepared to go home and tell the grandmothers, two aunts and the other children.  But then Ron looked at me and said, "God told me this two weeks ago, but I didn't feel I should tell you."  He said that one night he was laying in bed reading and all of a sudden, he heard the Holy Spirit speak to him the words, "Down Syndrome.  But it's going to be OK."  He prayed about it a minute and then kind of forgot about it until he saw little Matthew for the first time.  He was accepting this great, but I was a basket case.  I really did not know what to expect from it all, but I had such wonderful and supporting friends and family.  God even let a friend of mine, who is a nurse in the hospital I was in and who happens to have a teenage son with DS, be working that night!  We were so thankful to find out that Mattie had no major medical issues and he nursed like a champ from the get go.
    We didn't find out for sure that he had DS until the karyotype (blood test) came back 10 days after he was born.  At that point, Matthew was in PICU with RSV. He had almost died and I had bonded with him fiercly.  I was all alone when the doctor came to give me the report.  Ron had just left to go home to check on the other children.  When the doctor told me that he had that extra 21st chromosome and showed it to me on the lab report, I finally accepted it. As he was leaving, he looked at me and said, "You know, it's going to be OK."  Just what the Lord had spoken to Ron!  He left the room and with tears in my eyes, I looked out the window towards the setting sun and said, "OK God, we, You and me together, can do this!"
     Fast forward two years........I wouldn't have my little Mattie any other way!  I feel so blessed to have him and even feel so "special" to have been given such a gift.  The DS is what makes him Mattie!  As I get to know more people with these special children of all ages, I see what a delight they are and how all of us parents feel the same way.  Looking back, I wish that I could redo that moment when he was born.  It is so sad that the medical community cannot rejoice in the labor room when a child not "typical" is born.  I wish I could do it over again and not cry.  But I have to let go of that and I know that Mattie feels so loved. I'm so thankful to the Lord for placing him in our family.  God has truly changed me.  I feel like in the movie "Blind Side", when the Mom says to her friend, "No, we're not changing him, he's changing us!"

Mattie Said "Mama"!

Last night was a biggie for me!  Mattie has been babbling the "m" sound for a few days now and has even said "mama" a few times.  But it was more like babbling and I didn't really know if he knew what he was saying.  Well, last night he was tired and wanted me to hold him and give him his bottle.  I was busy putting his car seat back together after taking it apart to wash it (we all know how long and confusing that can be.)  Anyway, my back was turned to him and he just yelled at me all of sudden "Mama! Mama!"  I turned around and looked at him and I knew that he knew what he was saying and wanted my undivided attention.  It was a big deal for my little guy.  I just had to pick him up and kiss him all over :o) There is something so special about hearing any of our children say "mama" for the first time. I don't even know what the time table is for DS little boys to start purposefully talking, but I am so proud of him.  At 20 months, he babbles all the time, mimics his sister's noises and says about 10 words.  What a special blessing to me.  It reminds me not take anything for granted with our typical children either.  They are all amazing and so fearfully and wonderfully made!

Buddies Forever

My 12 year old son is very protective and possessive, at times, of his 18 month old brother. And really, he should be.  My little guy has Down Syndrome and my 12 year old has everything in the world going for him.  Yet they are buddies already!  He takes care of him so well and loves him fiercely.  When Mattie was born and we were surprised with his extra chromosome, he didn't blink an eye.  He has a friend with an older brother with Down Syndrome so he knew what it was all about, and yet he was so glad to have Mattie. My husband and I know he is a special gift to our whole family, but maybe mostly to Christian.  He was the one that prayed for a "baby brother."  One night, he was at church alone with my husband.  Our pastor challenged them to ask God for something...anything.  Ron had the thought to ask Christian, who was then 10 years old, if there was something special he wanted to ask God for.  He quickly said a "baby brother."  My husband was a little taken back because at that point Christian had a 7 year old  younger brother and 3 younger sisters, but he said that didn't count.  So, they asked God together and we got Mattie :o) Even now, Christian says that he wants to take care of Mattie forever.  He'll probably have to fight for him though, especially with his younger sisters!

Look What Mattie Can Do

My little guy, Mattie, just had his 18 month check-up this week.  And while there is much he cannot do that a typical 18 month old can, there is much he can do!  I did get a little discouraged when the pediatrician had me fill out the typical mental and motor assessment.  It make me remember all the things my other children were doing at this age.     If you cut his age in half, he's very advanced for a 9 month old!  That is usually how I think of his development and really he is doing very well.  So here's the run down:

He's babbling a lot and says about 5 different words (not sure if he knows what he's saying though.)

He loves eating and eats just about anything.  No more baby food for him and he has 5 teeth!  He doesn't like cups (we've tried many different kinds) and gets just about all his liquids still from a bottle.

He is crawling everywhere, but still commando.  He can stand holding onto the furniture and tries to pull himself up. He's not cruising yet though.

He claps and dances, all the time.  He raises his hands for "up" or "hold me."  He waves bye-bye, signs "more."  He is very social and is starting to play games and mimic.

He is in the 75 percentile for weight and 90 percentile for height (this is on the Down Syndrome chart.)

His thyroid is under control with his thyroid medicine and now there is no longer a heart murmur.  He actually has never even had an ear infection or been on an oral antibiotic for anything.

He is such a joy to be around.  I'm sure he's my easiest baby ever!  I'm so glad God gave us Mattie.

Hole is Closed!

Don't you like the stressed out Mom picture? You know, stressed Mom equals stressed baby :o) Anyway, Mattie was a trooper and the surgery went great.  We were able to see part of the surgery on film.  It was amazing, especially the before and after part.  We also saw the post op. echocardiogram which confirmed that the little coil they placed in the hole was in the right spot.  So there is now no more back flow of blood into the pulmonary artery.  He woke up cranky after surger, which is so unlike his usual self.  His right leg, where they went in the femoral artery, has been slow returning to normal though.  That leg is still cooler than the other and the doctor was not able to get all his pulses before they discharged us.  There was talk of them keeping Mattie overnight to give him blood thinners, but praise God the doctor thought the color in his leg and foot good enough to let us go home.  We are still watching it, but he is crawling all over the place today.  He's back to his happy self!  Thanks so much for all the prayers and concerns.

Heart Surgery....Another Piece of Mattie's Story

Well, it looks like my little guy will have to have heart surgery after all.  When he was born, and diagnosed with Down syndrome, we were told that his first echocardiogram was completely normal for his 2 day old status.  At a month old, we went for a follow-up visit with the pediatric cardiologist at UNC.  He said that Mattie had 2 small holes in his heart that were supposed to close at birth, but had not yet.  He also had a small VSD, which is a birth defect in the heart that is common for DS babies.  All the holes were small, so we were told to wait until he was over one year and at least 20 pounds to do anything about them.  They were not affecting him, so much as we could tell.  Well, praise God, 2 of the 3 holes have closed!  The VSD and PFO are completely gone, but a small PDA does still remain.  The cardiologist believes that since it has not closed by one year of age, that it will not and could adversely affect him later on in life.  To repair the hole, a procedure is done in the heart cath. lab at UNC hospital.  If all goes well, it will be an out-patient procedure. Of course, anytime you deal with the heart it is a scary thing and the doctors give you all the horrible possible things that could happen.  We are believing for the best and are so thankful that it will not be open heart surgery for our little guy.  He will have the surgery done on Wed. May 5th and we covet your prayers.  I will keep everyone updated.  Isn't this recent picture just precious?!

Born with a Little Something Extra

My youngest blessing was a special surprise. He was born full-term and perfect to me. At birth we were told that he had some Down Syndrome markers. At first I was in denial, shock and very fearful of the future. My husband handled it with grace. God had told him about 2 weeks before his birth that Mattie would have DS, but my husband didn't tell me. There are many stories of mothers and their deep love for their "special" children and what a surprise blessing they were. I love Mattie so much and he is such a treasure to our family. I wanted to write this though, to encourage women that having a baby with DS is really not a scary thing. It's not even a negative. I know, I was one of those women that never would of asked for a special needs child, but now that I have had a child with DS, I would even welcome another one! If you are a woman thinking of having another baby, but because of your age or another reason are scared, don't be! If God blesses you with one of these precious children, you will be thrilled! My Matt is the easiest, sweetest baby ever. I feel so privileged to raise him. I feel like I am in a private little club with all the other women with DS children. It is truly the best club that you would never ask to join!