A Better Life

It's been a really long time since I have posted anything. I guess I haven't found the time, because I am not at a lack of things to say. Since my last post, Matthew has done some amazing things. I sometimes forget to rejoice in the accomplishments he is making because I just get too caught up in the busy pace of life.

Matthew turned 2 in June. I thought he would be walking by age 2, but not quite. Maybe 2 1/2? A week before his birthday, he became very sick. Every time we did a feeding he would throw up. After an entire Saturday of this I knew something was wrong and took him to the ER in Bentonville. I won't take this time for details but it was not a good experience and I won't ever go there again. By Monday, it had continued and I took him to his Dr. He was admitted to the hospital in Fayetteville- amazing! highly recommend Fayetteville hospital. The short story is that he was there a week.

They found an intestinal blockage and worked it out. A special thanks to Chad, Lindsey, Erin, and Mike for coming by for an evening so that we could get away to celebrate Jonathan's 6th birthday.

During this time, we did get an answered prayer that we weren't expecting. His feedings were stopped until he was cleaned out- just had an IV. He became hungry, and saw me eating a plate of food. He would try to grab the food off of my plate and put it in his mouth- Even though he didn't know how to eat by mouth. Until this time he had such an adversity to food that he would start to gag and throw up as soon as we held a spoon to his mouth. That next Monday when he was back at school, I took some muffins for the class to celebrate Matthew's birthday. I told the teachers to let Matthew play with some muffins while the other children ate them. He actually ate them! This is an on going process, but now that he is trying foods, we are optimistic that tube feedings will one day just be a memory.

Some other great accomplishments that we are celebrating- Although he doesn't speak yet, he is learning sign language. He says "all done", "more", "please", and "touchdown" (thanks Daddy!). When I pick him up from school, he blows kisses to his teachers. He is developing socially, playing with his friends, although somewhat of a biter. And he has shown a real love for music. Put him in front of the piano and he will "play" it forever. Once he hears music on the radio or TV, he begins dancing- so sweet.

A few weeks ago, the Pastor's sermon was about "how can my life count", what we will spend our life doing. This is something I have thought about a lot. I want do many things- be a stay at home mom, climb the corporate ladder, run my own business, run another marathon, keep a clean house (not likely), be an extreme couponer... and the list goes on. I realize I won't do all of these things, and also feel that my greatest purpose is being a wife and mom (doing it for God's glory).

Therefore, whatever you eat or drink, or whatever you do, do all to the glory of God. 1 Corinthians 10:31

What I am about to say next sounds horrible, but I have dealt with guilt over Matthew. We always said we would have 2 children. My husband was happy with 2, but for some reason, I began insisting we have another. I honestly felt like someone was missing, and our family was not complete yet. Once he was born and we realized the long road ahead, I felt that it was all my fault. Why was I so extremely persistant on a 3rd child? And the truth is: If we had stopped with 2 boys, our lives would be easier, cheaper, less heart breaking, but- Our lives would not be better. Matthew teaches us patience, unconditional love, a greater understanding for the disabled, and so much more. Thank you Matthew for making our lives better.

A Thankful Heart

Colossians 3:17 And whatever you do in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him.

I love my embroidery machine. I love all of the great things I can create. I love that it is a source for a little extra money. But it is not all about the money.
I just finished embroidering 59 monogrammed beach towels for the staff at Reece's daycare, for their teacher appreaciation week. It turned out to be a big project, but I was happy to do it. In fact it seems like such an insignificant way to show how much I appreciate everyone on the staff. Jonathan was at this daycare from the day he was 3 months old until he want to kindergarten. Reece has been there for 4 years. And Matthew spent one year at this daycare. In fact there was about 1 year when all three boys were there. A little painful on the checkbook, but totally worth it. Not to mention, how much easier it is when they were all in the same place- now we have 3 kids in 3 different places- from one end of the county to the other.

Unfortunately, tomorrow is Reece's last day. It kinda breaks my heart. He will be going to another good preschool, which is where Jonathan is after school, and we will have 3 kids in just 2 places. Before I started monogramming their beach towels, I realized that almost every single person on the staff, has had some interaction with the boys. A few of them are like family.

Reece has been with Ms. Betty for the last 9 months. Friday he was crying as he left because he wanted to stay with Ms. Betty instead of going home. In fact, sometimes he calls me Ms. Betty.

I can't say enough for how accomodating the daycare was for Matthew. His physical and speach therapists would meet him there. When he got his button for tube feeding, they fed him with no complaints. Actually it was so much easier to tube feed him than bottle feed him. He refused to accept the bottle and the only time he would eat is when he was asleep. Ms. Melissa and myself were about the only 2 people that were able to feed him. He was given so much love from Ms. Melissa, Ms. Traci, and Ms Rosemary. It broke my heart when we moved him to another daycare that was able to meet his needs. I knew that developmentally he was going to a good place, but wondered if anyone could love him like they did.

I am not able to stay home to raise my boys, but it is so comforting to know that they have been in a great place. Thank you to all of you for making a difference in the life of a child! You are amazing.

Happy Mother's Day

I became connected with another mom, who shares a similar situation as I do- 3 little boys, and 1 with special needs. Her son is older than Matthew, and it has been comforting to hear about things I may expect in the future. One day I hope to meet her. She shared this essay with me a long time ago and it has blessed me. I am posting it here, but it comes from iveysimans.blogspot.com.

Some Mothers get Babies with Something More
by Lori Borgman
Monday, May 12, 2002

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

It is about time I posted a little tidbit about the sewing side of this blog. If you have watched SewingASeed on facebook, you know that I was selling monogrammed Easter baskets. They are these really cute canvas market totes, completely collapsable, mesh pockets on the inside, 9 color options. Just awesome! I love them! I actually sold quite a few of them, in a very short amount of time.
And here is the story, behind the story...

My husband and I have taking Financial Peace University, Dave Ramsey class. It has been great for us- realizing our debt to savings ratio and realizing we have a lot of work to do. We had to put our budget on paper to see where every $ is going, it became shockingly clear that we were not tithing correctly. So, for April, I wrote the tithe check and tried not to worry about what bill we couldn't pay that month. I do believe that God does pour out blessings to those who tithe. And don't we all want to be blessed?!

Malachi 3:10 Bring all the tithes into the storehouse, that there may be food in My house, and try Me now in this, Says the Lord of hosts, "If I will not open for you the windows of heaven and pour out for the such blessing that there will not be room enough to receive it."

About a week after I wrote that check a friend of mine asked me if I could make some monogrammed easter baskets that she saw elsewhere. I found the wholesale site, and ordered some. I then posted the monogrammed Easter baskets at various places. I hoped to sell 40 in order to bring in some extra $. I sold over 125! Only a fool would not give God the glory.
And just in case you didn't get your basket yet, they are still for sale. They have a million uses- here are just a few.

*Baby gift- get the baby's name monogrammed on the tote, and fill it will diapers, wipes, and all that good baby stuff.

*Wedding gift- embroider with the happy couples new last name, and fill with some items for a picnic

*Graduation gift- have the graduate's name using the school colors on the basket and fill with monogrammmed towels.

*Teacher Appreciation- embroider the teacher's name and fill with fun school supplies

Can you hear me now...Good.

Matthew's last appointment at the Children's Hospital was a check up with audiology and the ear/nose/throat doctor. With just one ear, we want to do everything we can to protect his hearing. He got a tube in his ear last April 2010 and a few months later had a hearing test at audiology. They concluded that he has slight hearing loss. I refuse to accept that, but believe it is rather his reactions to the way hearing is tested. Trust me- this boy knows his mama's voice!

And so this past Jan. his hearing is tested again. We go into this tiny storm shelter type of room. He is sitting on my lap and facing a nurse who is using toys and books to capture his attention. Meanwhile there is another nurse behind a 2 way mirror who will speak or make noises that will come through speakers in the room, either on his right or his left. They are watching for his reaction to her noises. Maybe with Agenesis of the Corpus Callosum, it may take longer for his brain to process information. So even if he can hear, does that mean he will show a reaction to this lady's voice?

An interesting thing happened. As she would make noises, he would show little or no reaction. Keep in mind, there is someone if front of him trying to keep his attention on her. But when she would say his name, "Matthew" he would look for her voice. Kind of makes you wonder if he is really smarter than we are, and knows it is not worth his time to react to every noise if he doesn't think it is directed towards him.

But also made me think about all the times I desparately want to hear a word from God, and expect to audibly hear Him saying my name, all the while missing all of those "noises" that He is using to speak to me. As a wise man often says to me- "Faith comes from hearing, and hearing by the WORD OF GOD" (Romans 10:17) Want to hear God's voice? Read the Bible.

They concluded that he can hear, and would test it again in about 6 months. So we had a few hours until his ENT apt, and went to the hospital cafeteria. Pretty good food and has large windows that overlook the state capital. As we were eating, Matthew's twin sister sat down at the table next to us. This sweet little girl about his age, with white blond hair, also missing one ear.

We spent some time outside and you can see Matthew enjoying the waterfall.

Finally time to see the ENT doctor. Our big concern being that he has had an ear infection pretty much everyday since October. The tube he got in April was obviously gone, and he needs a new one.

Daddy and Matthew are ready for the doctor

Still waiting for the doctor

And the doctor did come. He sees hundreds, maybe thousands of kids- but he remembered Matthew. He said "this is the baby that would only eat while he was sleeping". And more than once he commented on how much Matthew has progressed, how good he is doing. Still brings a little tear to my eye. Of course it would be perfect if he was developing at the same rate as his peers, but really he has come so far, and made huge strides. He inspires me.

Matthew will be getting a tube in his ear on Tuesday, also removing his adnoids, and doing a CT scan to understand if he has an inner ear on his right side. Right before he wakes up, his feeding button will be removed and a new one put in (hopefully one that doesn't leak!) As any mama would be- I am a little anxious. Please pray for the doctors and anathesiologist and of course Matthew.

Call to Me and I will answer you, and I will tell you great and mighty things which you do not know. Jeremiah 33:3

Patience

I have a quiet, relaxed personality. I don't get over excited about much of anything. A friend of mine once told me that I have the Patience of Job. I can't say that I have ever experienced anything near what Job did. But I have a couple of boys that could test anyone's patience! (just kidding- they are angels.)

I don't think I understood patience until Matthew was born. We knew Matthew may have delayed development, but we were not sure what that meant. As a mother, you watch for every milestone that your newborn meets and you proudly announce to the world that your child is more advanced than 90% of the babies his age.

When Matthew didn't cry until he was 1 month old, I guess I should have figured that all other milestones would be delayed. I kept watching for him to smile at me. I knew that would usually come around 5 weeks. But that day came and went. I think he was nearly 3 months old before I saw a slight smile. During that time, we dind't know what to expect. If he isn't meeting milestones, then what will his future be? There was a part of me that wasn't ready to accept his delay. If I accepted the fact that he is delayed, then I would have to come to terms with the fact he wouldn't fit into society's understanding of "normal". But now I ask, what really is normal?

Over time, we realized that Matthew is meeting milestones, but he is on his own schedule. Knowing this, we have no reason to believe he will not meet a milestone, but we just do not know when. We must have patience.

Be assured and understand that the trial and proving of your faith bring out endurance and steadfastness and patience. James 1:3

I do believe that most of his delays are related to his low muscle tone. You take for granted how much muscle it takes to just hold up your head. The muscles around his eyes were also weak, and he didn't focus or make eye contact with me until he was about 3 1/2 months old. I think he was about 6 months old when he was able to roll over. It was 13 months before he coudl sit up.

Swallowing was extremely difficult for Matthew due to the muscle in his esophagus. He may not have completely mastered swallowing, but he is doing much better. You can't survive without swallowing, and he had so much trouble with the bottle, that he did eventually get a button for tube feeding. We know it is temporary and he will eat by mouth, we just don't know when.

Friends of mine have babies who are younger than Matthew, and they have been walking for a while. I have to remind myself that Matthew is so unique and he is not going to follow the same schedule as his peers. He mastered army crawling when he was nearly 10 months old, but wasn't quite strong enough to lift up his body and crawl with his knees. Unfortunately, with his belly on the ground, his button would pop open, and he would leave a trail of milk behind him.

Every milestone is a huge celebration. He did start crawling a month ago. I will never forget the feeling when I saw it for the first time. Amazing!

(It took me forever to post this because I was trying to up load a video of him crawling, but can't figure out the video, so you will just have to look at these still photos and imagine him crawling)

I waited patiently for the Lord, he turned to me and heard my cry. Psalm 40:1

Every creature of God is good

The other day, Matthew and I were at the fabric store. If you ever need to find me, you may want to try a fabric store. All of a sudden, this woman came out of nowhere and said, "what happened to his ear?" I could feel my face getting red. I was angry. Why was she asking this? Was it really important to her to understand why he doesn't have an ear? Does she ask questions of every handicapped person that she sees? She then said that she is a nurse. I have no idea what being a nurse has to do with being nosey of a child's handicap. What if I asked her what happened to her waistline, and I needed to know because I used to be a runner...



I have had this question by little kids, and it makes sense, because they are taught that people have 2 eyes, 2 ears, a mouth and a nose. When I simply explain that God made him this way, they find that acceptable and move on.



We have been to the Children's Hospital in Little Rock a lot in the past 18 months. Every time I go there I am humbled. Some children are dealing with some very serious stuff. None of us should take for granted what we have. When we are at the Children's Hospital, people don't stare. They don't act strange when Matthew gets excited and his head bobbles. They smile. They have a look of understanding in their eyes and they smile.



Something to think about the next time you see a handicapped person. They are just like you and me. Everyone of us has issues, some are just more visibly obvious than others. We are all children of God and special in His eyes. No person chooses to be handicapped, and no parent prays to God that they will have a child with special needs, continuous doctor appointments, expensive therapies, and physical and social challenges.

Every creature of God is good. 1 Timothy 4:4

I know some of you are curious about Matthew's progress. All you have to say is, "do you mind if I ask you about Matthew?" And I would be happy to tell you about all of the great things he is doing.