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!