2 months old

I can't believe how fast time has flown! My bundle is getting so plump and beautiful. In her second month of life, she has learned to breastfeed exclusively and does so like she's never had a problem before! She also sleeps thru most of the night going anywhere from 5-7 hour stretches. We've been blessed with her smiles and just 2 days ago we heard her begin to coo!!!!! So every now and then I get a melt my heart "oooo" from her and her round face and round lips just melt my insides!!! Through her therapy we are still working on her neck muscles and we can sometimes feel her using her muscles to hold her head. I will try to get her 2 month picture available so you can see just how cute she is getting!

SMILES FROM HEAVEN!!!!!

I am filled with joy unspeakable this morning. Tuesday August 18th, 2009, Lylah burst out with smiles sent from heaven! It wasn't just one, not two, but smile after smile after smile brought in the music of glee to fill our home with the reminder of the things that matter! I had just read somewhere that we should take hold to treasure the small things for we know not what small things shall be the big things in life. Another way of saying it is stop to smell the rose along the way and you know not what field of flowers will await to delight your senses. What makes this first smile so monumental for us?...Lylah is 11 weeks old tommorrow. And we are just now experiencing this wonderful gift. We were told that the older she gets, the more we'll see her delays but we will rejoice more when she reaches them. I just couldn't imagine how much a smile could matter. I thank my God in Heaven for his abundant creativity. I thank him for my precious gift Lylah in whom I've learned so much of myself and am just getting to taste and see of the Lord's incredible goodness. I'm not deserving of His gift to me and yet I feel so honored to be the one to get to embrace this precious child and I'm filled with pride that I got to receive her smiles from heaven!!!!!!!

One Month...

Our precious one is now one month old! So much has happened this last month, but I especially want to share the victories! She had her heart echo done and they only found a pinhole size hole in her heart. We haven't met with the doctor yet concerning this, but we believe that means just a watchful eye and no surgery nor medications. The other victory comes with her ability to begin nursing!!! She has the strength now to latch on for an average of two minutes. We are so proud of her progress and hope to soon be nursing full-time. She has gained weight to about a 7.9 pounds and has grown 1 1/2 inches. I'll post a more recent picture when I can.

gift packages

I love a beautifully wrapped package. One can browse the aisles selecting various colors, stickers, twirls and stuffings to make the perfect presentation. I am in awe at the gift packages God brings into our lives. His creative presentations keep us on our toes, and we can never know what to expect. Our huge suprise of Lylah has brought with her many small gift packages too! This past weekend we were blessed immensly by the company of another like-minded family whose daughter of 3 years has Downs Syndrome. Of course, there were eight other children who delighted us as well. It was one of those experiences that was so refreshing, I just keep replaying the conversations and admonitions given to us. This family truly has walked in the presence of God and one can feel His presence within their home. Not only did we talk for hours, there were games, great outdoor fun and incredible food. The evening came to such a peaceful closure as children shared songs on instruments and scriptures they had memorized. Most amazing was watching their daughters quote the entire book of James! The mother reminded me of another very dear friend of mine in Florida...very gentle but honest in her leading. We went away inspired once again to become very consistent with our children, promtly training and always loving. The daughters sent us away with wonderful handiworks they had made for the baby....blankets, booties, burp rags and doilies. Oh to be such a refreshment to others is my dream for my family!!!! In what ways have you refreshed someone today?

Please God, hold the hand of my friend too...

Dearest God,
Your child and friend of mine is now facing her last 2 weeks of life. She fought her battle hard and always with a smile that gave testiment to your great joy and strength. And now, you have chosen to say it's over. You have chosen to tell her she was so faithful and now it's almost time for healing and rest. Bless her two small daughters with inspiration to carry them through a lifetime without mommy. Bless her husband with strength to face the many lonely days ahead. Why must the journey be so hard?

Hold My Hand Because I Can't Hold Yours

For those parents who have been blessed with children with disabilities, I'm sure you can understand what I'm about to share. For others, these thoughts may seem foreign or even wrong. However, the feelings and thoughts are real and by sharing them I gain perspective as you will see as you read.
Sometimes I find the connection hard to make. I look in her eyes and wonder if she even realizes I'm her mother. I've done enough research to understand the delays in development she will face. I won't even hear the words "mamma" or "dadda" until her speech development begins to work itself out. Some of these children are never able to speak clearly. For so many people, hearing the words "I love you" solidify relationships. She doesn't even realize. I try to hold her hand. She can't hold mine. Her muscle tone is so weak, she can't grasp my fingers. For some, physical touch solidifies a relationship. She doesn't even realize. I want so bad to feel a connection, she doesn't even realize how helpless she is. And for the parents of severely handicapped children, how do you find the connection when they aren't able to connect? And then the Lord gently reminds me. We are all handicapped. Spiritually handicapped. The condition?...Sin! Sin cripples all of us. We suffer varying degrees of difficulties with sin that so easily entangles us. And we don't even realize. God wants so much to hear us say "Abba". But we dont, and we don't even realize. God wants so much to hold our hands. We can't. Our sins make us so weak, we can't grasp our fingers around his. We don't even realize. God so longs to solidify a relationship with us. He wants to feel so close and connected. And yet, we don't even realize. Thank you for showing me through my precious child how you long to be close to each of us.

our button at 2 weeks

Moving In

In my greatest imagination I would have never guessed what this summer would bring our way. We certainly knew of the baby's arrival, but the package she would bring with her...so many gifts in the future yet to be unwrapped. With the confirming of downs syndrome, we realized our current housing situation would not be suitable for our family and for the many workers that would be visiting for therapy. Well, actually God decided that for us through circumstances. Looking back, it brings a little laughter but last week it wasn't so funny. Dear honey was taking down the front porch because it had begun to warp and boards were loose, making the porch unsafe. Once the porch had been taken down, the children tried out the stairs, running in and out. This was of course done with a resounding "close the door!" However, the door would not close. Little had we realized the floor joint had rotted out. When the porch came down, the wall tore away from the flooring leaving a small gap along the bottom of the door and down the side of the kitchen. The gap wrapped itself around the end of the mobile home and the window frames came out of their homes. Same day, new project. Honey was taking the window unit out of the kitchen to move it to the living room. The wall underneath the unit was so rotted it collapsed. Two days later, something under our washer broke and now water pours across the floor while washing. Our dryer stopped working around the same time requiring something heavy to hold the door closed. Wow! It became very evident it was time to move on. So after much prayer and counsel we began the search for "the home." My husband began the journey on his own and found "the one" that very day. He took us to see it and we all fell in love with it. Then the hard part...credit checks and pre-approval. After two days we were told it would not work for us so we continued the looking. There was nothing!!!! Then we simply took a stop at the mobile home community right around the corner from us. After spending a great deal of time talking with them, it turns out that we could give the original home a try. We ran several scenerios of numbers and everyone of them worked! So we gave it a try.....and....we were approved!!!!!!! Now we are frantically clearing our land and packing. We are waiting on the appraiser to come out and hopefully after that the home is ours. Yikes! That gives us about three weeks to pack up our home, move everything to storage, sell this mobile home, bring many loads of dirt in and spread that before the new home gets brought in. So another adventure ensues! And for those of you who know us well, our adventures are always huge! So please continue to pray for us as we prepare the next several weeks for this.

when surreal becomes real

It was Friday June 26th. The day we had been waiting a week for. The day we would receive the results of the chromosone blood testing that would confirm or negate what the doctors had felt all along. After securing care for the other children, we made our way to the office, anxious and yet peaceful. Upon arrival, we were given the usual paperwork for first time patients and spent the next minutes filling out the necessary information. There were 2 other mothers there with small babies held closely in their arms. Then there was the "tribe". A lady had managed to rush in her crew of 8 right before us and then managed to give those poor mothers a reason to snuggle their babies close. I must admit my dismay over the behavior of those children who wrestled on the floor, zigzagging from one chair to the next, and throwing toys across the room. Their laughter and idle chatter was loud and unruly. I found myself correcting two of the children who had almost fallen into the lap of one of the helpless mothers. This sent my mind to reflecting on my calling as a mother. When others spend time with my family, what "atmosphere" do we bring to the situation? A pang of conviction swept over me that indeed we all have so far to go, and I prayed that God would indeed show mercy on me as I continue to face the challenge of molding these precious souls. A call of my name brought me back to the moment and it was time. We were escorted to the room and precious baby had to be undressed down to a dry diaper to be weighed. Our little one managed to gain back the weight she lost plus and extra two ounces! Back in the room, my husband scanned the magazines to find an interesting read, but found instead page after page of the hurt of this lost world. I truly felt grateful to God's mercies that he indeed called me as his own and has protected me from so much of the hurt caused by sinful living. The tap on the door made my heart thump just a little harder, and then I felt everything move into slow motion. The doctor introduced himself very confidently and after a brief talk, we felt our baby would be under incredible care of him as he works directly with Texas Children's Hospital. He lifted our bundle and handled her like a piece of china, scouring over every piece of her fragile form. He said the chromosone test had not yet been faxed over to him, but that it was very evident she was a downs baby. He sat on his stool and walked us through the plan for her care in the next few weeks. I think I heard him, but found myself simply nodding in agreement out of habit. It was then that the movie screen blurred the next few months and years into a speeding tunnel. I found myself furiously driving from one appointment to the next, loading up eight children in the car packed with extra groceries for the long hours of driving and waiting. Calendar pages were filling up faster than I could write, and yet there were still seven other children to taxi around to their involvements, and then there was homeschooling. A firm hand shaking mine brought me back to the present and I simply smiled and nodded a thank you for all he had done to help us get started. He left, and I still felt like there was no closure. I was still left to wonder if it was real. The nurse arrived to handle the pku test and little baby handled it as strong as ever and my heart swelled with pride that this precious bundle had so much strength at such a young age. I knew then that if she could handle this, so could I. As we dressed the baby a knock came at the door and the doctor came in with papers. He had just received the fax. In that very second a surge of warmth shot through me and I felt peace. The lab results indeed confirmed a third strand on chromosone 21. I heard it and the new reality settled into my mind. He handed the papers to us and it was when I actually saw the picture that it all became real in my heart. For nine days my mind had whirled in a fog and now the fog had cleared. It's a big journey ahead, but it will be ok because we'll just take one step at a time. I find myself blessed. There are many parents facing a hopeless diagnosis of their child's illness. There are many children facing crippling handicaps that will require interventions unthinkable to us. I am blessed. You are too. Go to your children and thank God for every moment you have with them. Laugh with them, for you could have a child that can't utter a sound. Let us live, laugh and love for all of those who cannot.

Food for the Journey

Incredible dishes created with loving hands ministering to others are the best! We have been able to enjoy wonderful meals sent our way during our transition. Mealtime for most is a natural occurrence and perhaps a gift that we take too lightly at times, until we are introduced to someone who struggles to eat. Special needs folks from infants to elderly often struggle with this basic skill and the medical community has found many ways to help in adapting to make this possible. Our precious angel struggles to have the strength to wake up to eat. Feeding her will usually take a little more than an hour for completion. The process begins with carrying her limp body to a brightly lit location, changing her diaper and then beginning a full body massage to stir her into wakefulness. However, this technique doesn't pull her out of her slumber and we move to the next step. I pour my pumped milk into a Haverman Feeder and literally feed her while she sleeps. The Haverman Feeder is specially designed for special needs infants, especially for cleft lip and down syndrome cases. The flow of milk starts with compression of the mouth rather than sucking the nipple. Infants with very little to no muscle tone in their mouths are able to simply move their jaw up and down to compress the milk. I usually aid in moving her jaw for her so the milk comes. Using this feeder, she eats incredibly well a full 2.5 oz or more. We are also experiencing some special bonding times the last couple of days....she has been able to nurse successfully and thoroughly during her wakeful times. When she is wide awake, she is able to latch on and we rejoice in that victory! Our prayer is that she will eventually gain the strength needed to wake up to respond more readily to feeding. Yet another reminder of how good life truly is....eat a great meal with your family, thank God for each member and tell them how blessed you are to have them!

The Overwhelming Vision Before me...

Day 2: The sun warmed the earth with the gentle touch of its rays. The birds provided the music for nature's symphony. The flowers lifted their heads beaming with praise to the creator. While outside the world busied itself for a new day, I sat in my hospital bed in tears. Perhaps exhaustion had settled in mixing itself in with hormones and reality. Whatever the real reason, the tears came in such a flood and prayer seemed impossible. I couldn't seem to fathom the reality that lie before me. I didn't know much about what I would face, but the doctors confirmed it would be very trying and would totally change our family. All I could think about was what I could have done wrong to have this happen to her. I'm not sure yet if I was pitying myself or her, but I couldn't come to terms with why she would have to suffer for something I may have done. The next four hours found these same thoughts slamming me into a brick wall of despair. I've always heard that in the various trials we must face, we tend to go through cycles of emotions that include shock, denial, anger, guilt and acceptance. Perhaps this was one of the many waves we'd experience on this new journey. I found the precious Holy Spirit giving comfort during these surges of emotions. The truth of scripture implanted in my heart gave comforting soil for my tears to fall upon. God spoke to me from Psalms 139:13-16.
"For you formed (her) inward parts; you knitted (her) together in my womb. I praise you, for (she) is fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. (Her) frame was not hidden from you, when (she) was being made in secret, intricately woven in the depths of the earth. Your eyes saw (her) unformed substance; in your book were written, every one of them, the days that were formed for (her) when as yet there were none of them."
Most encouraging to me was to know that when she was being formed in the darkness of the womb, God was aware of the special way he would create her to make her uniquely great for his glory. I find myself humbled that he would find me faithful to carry this great blessing for him.

Open The Gate

The homestead has been coming together little by little. The garden is in, the animal pens are full and continued projects line up like ducks in a row. The fence is up and all is well. Then God invited us to add a gate! We already had 2 gates...welcoming home father from work, welcoming in guests to sit for a spell. However, this gate was for us...to walk out of...into a new view of our homestead. Wed, June 17th, we opened the gate and took our first step away from everything we knew. We call our gate Lylah Kate, born 2 weeks early at 6 pounds 6 ounces, 17 1/2 inches long. Within a few hours of birth, the doctor expressed the concern of possible down's syndrome and testing was needed for confirming what many felt for sure. I guess I'm still in a surreal state of feeling this even 4 days later, but the news did not send an initial shock wave over me. In fact, I felt a real sense of God's calming peace and affirmation that he had desired this for us. Out of all the mommy's and daddy's in the world, he chose us to carry this blessing! In a matter of hours, we were flooded with hospital staff bringing in loads of information concerning the details of Down's Syndrome and all the wonderful support groups available for us. We discovered how blessed we were to experience this new direction in such a time as this...with so many services, therapies and helps available to baby and family. So here we stand, the gate is opened and the view is breathtaking! Mountains and valleys stretch out before us, the meadows are brilliant with flowers and off in the distance a rainbow dances across the rolling hills. We welcome our new journey, and invite you to come with us!