Patron Saint for Children with Cleft

I choose Blessed Margaret of Castello. Cleft and craniofacial birth defects do not actually appear on a "list" of Patron Saints, so far as I can tell. Comedians, yes. Cleft, no. I take this as an opportunity to choose someone who clearly can associate with our child's condition.

Although Blessed Margaret has not been canonized yet, she is included in this Patron Saints list. It is pretty extensive. These few lines from her biography has endeared her to my cause:

"The birth of a deformed child is a traumatic experience for most parents. After the initial shock, grace and compassion conquer outright rejection. This was not so with Margaret’s parents. Blessed Margaret of Castello was born dreadfully deformed. She was a dwarf, totally blind, hunch-backed and so lame she could hardly walk. Her father immediately ordered the child to be kept out of sight."

I remember now, so clearly, those first few months before Holly's lip repair. I remember her birth and how immediate grace and compassion conquered any shock Lee and I may have felt. I remember Lee, after composing himself, walked over to hold Holly and kiss her. And later, how I wanted to hide her, not from sight but from ridicule. I did not want to hear any unintentionally unkind remarks, I did not want my other children to hear any thoughts that they might remember and repeat later.

Margaret, without the love and support Holly has received from such a far reaching community, achieved the status of Blessed. I hope that Holly will know the compassion and love of Jesus as well as Margaret did.

"Margaret was remarkable for clarity of mind and for infused contemplation. She willingly embraced her cross because she saw suffering through the eyes of faith. She did not know why God permitted her to have so many afflictions; but what she did know, was that He never permits one single misfortune without good reason. Margaret often wondered why people pitied her since she viewed her suffering as the expression of Christ’s love for her and her means to gain heaven. Pain made Margaret compassionate, sensitive and understanding toward others. She visited prisoners, helped the sick, comforted the dying. In spite of her handicap, Margaret was always joyful and courageous. She never became bitter, never complained, never reproached others, never lost heart. Rather, Margaret sought and found her strength in prayer and the sacraments. In every adversity, she turned to Jesus, Mary, Joseph and Dominic…there to find the courage to go on. And Margaret did go on…to achieve an intimacy with the Lord known only by those who love Him uncompromisingly."

Blessed Margaret of Castello, I choose you for our Patron Saint.

Baby Whisperer Part II

Or maybe this should be the "Cleft Edition."

There are plenty of good websites that help explain feeding a child with a cleft lip and/or palate. Like this or this. Here's a few things not mentioned.

1. Yes, when your new born drinks a bottle, he/she will absolutely swallow more air. At first. Eventually, within a few days, you should see an improvement. Otherwise, try another bottle. Once Holly and I tried the Medela Special Needs Feeder, regular size, I could see that Holly was not swallowing so much extra air. And she did not need to burp so often. The other bottles we tried, including the Mini Medela bottle, just didn't work quite right for us.

2. Can I just say this one more time? It is so very important. A new Medela Special Needs Feeder nipple can increase the amount of time your new born takes to finish a bottle, ALOT. From 15 mins to an hour or longer. Now that Holly is older, 6 months, the switch is not so drastic, but still noticeable. Be aware of how old the nipple is, especially at night. Even more important if your little one is struggling with weight gain issues. You can lessen this impact, by pressing the nipple between your fingers to help "soften" before you begin using a new nipple.

3. Milk Allergies and Lactose Intolerance ARE DIFFERENT from 'extra air being swallowed." These two conditions are not cleft related. You can tell the difference! Do not let a doctor tell you otherwise. Symptons of milk allergies (like any food allergy) include gasping, wheezing, difficulty swallowing and bloated stomach.

Lactose Intolerance can cause "colic" like symptoms, inconsolable crying. For Holly, the crying would begin about 20 mins after the bottle. This can include diarrhea or constipation. Do not let a doctor tell you, because your baby doesn't have near death diarrhea, there is no problem.

4. Reflux. What can I say about that? Well, if you have the right bottle, the right formula and your little one is still unusually irritable, something else may be up. Like, Reflux. Lots of good info on the web about this too. Holly's main "signal sympton" is a cough that cause her to cry.

Eventually, your baby will drink a bottle like any other, learn to burp themselves and generally be a happy little kid. You can be the Baby Whisperer for your little one, babies really don't cry for no reason at all.

Cleft Talk

Two must visit sites are:

http://www.cleft-sa.sohot.com.au/whatnow.htm

and

http://www.jeremiahsstory.com/index.htm

In addition to Wide Smiles, if you are the parent of a child with a cleft, these two sites have perfectly described what is happening to me (and Holly).

Thank you God, that Holly was born in this time. That through this internet I can find support and encouragement from around the world!

Change in Plans

Sometimes when you wake up in the morning, you just have to go to Plan B. Maybe it is when you or a child gets the latest virus floating around. Or if your dishwasher breaks. Or, lets say, you realize that "Yes, you are pregnant...again!"

For seven years, when people would ask that question "are you done having children?" I would reply, God Willing. Apparently God was willing in another direction. As 2007 passed, both Lee and I began to realize that one more child might be a good thing. So onto Plan B.

We joyfully began to make space in our house and hearts for our fourth child, Holly Marie. Our due date came soon enough, and Holly Marie was born. As for Plan B? Well, that has become Plans C, D, E.... Holly arrived with a cleft lip and palate.

She is beautiful, nonetheless. And her wide smile is a joy to see. Fortunately, God has place many people in our lives to guide through the next few years filled with surgeries and doctors appointments. The Wide Smiles website is a wealth of information. And even in our small town, it didn't take too long to meet other moms whose children are cleft affected.

So my new prayers is "Jesus, I trust in You." Along with the Divine Chaplet of Mercy, for those long new baby nights. I will share more about this journey as we go along. Hopefully, my prayer can become your prayer "Jesus, I trust in You" no matter what Plan B brings.