This week has been loads of fun for the Snipes family.  We got a new helper for Xavier, his name is James.  He is a 21y/o man who has a lot of experience in helping people with disabilities.  In fact his younger brother (20y/o) has cerebral palsy (the same diagnosis Xavier was given to explain why he cannot walk).  While orienting James to our family I have been very busy and thankfully daddy has been home to pick up the slack from mommy in helping the girls go about their daily routine.

Since we've had three adults in the house with three kids, we've got to do a few more fun things.  I'm sure you saw the video about Xavier acting like "Jaws" and scaring his sisters and I...so I'm guessing you gather we've been swimming a lot more.  Boy have we ever!!  It is wonderful to enjoy the water and relax with the children and hubby, who is really just another big kid, in these last days of summer.

The lesson I learned today came from MaryElizabeth in her selfless love for her brother.  Chris and I have been working with MaryEliz this week to "teach her to swim".  She is a natural.  In three trips to the pool she is already swimming underwater to and from mommy and daddy at a distance of 5ft apart.  Not only can she swim underwater but she is jumping off the diving board and even decided today that she wanted to go down the slide (notice it in the Jaws video next time--it is a BIG slide for somebody who is not yet 3ft tall)!

I was so excited about her accomplishments today I could barely contain myself.  I told her how proud I was of her swimming, sliding and jumping and she simply smiled, turned to her brother and said, "yea Zaver I so proud of you, you did so good swimmin'...you a big boy like I a big girl!"

I was astounded.  I thank God everyday for giving me such a sweet yet spunky little girl who is so selfless that in the moment of one of her greatest achievements in her 2years of life, she passed it off like it was no big deal and gave the glory to her brother!  What a role model for me...if I could only be so pure!

Xavier has always fit into the above category.  He has been a difficult feeder since he stopped nursing.  We initially worked our way from purred baby food to toddler food right around age 3, but something happened and Xavier regressed. 

This was the first regression we experienced with our special boy and it was sure perplexing.  I write about this issue now because Xavier has come full circle once again and he is back to eating toddler foods.  The challenge came when we could not put our fingers on why he regressed.  Was it the medications he was taking or could it be his seizures that were preventing him from eating the foods that he used to eat? 

We pursued swallow studies, feeding clinic's with professionals trained in feeding problems, basically we pulled out all the stops.  No one could really tell us why Xavier was not eating toddler foods again.  On a nutritional side note, during these really tough times, like when he'd spit everything out you'd feed him, I would supplement his feedings with Ensure so that he was still getting proper nutrition.  During this period in life it was revealed to us the quintessential life lesson of being Xavier's caregiver:  No one really knows what's wrong or why he does what he does, but such is Xavier.

We learned to roll with it, essentially we would read his body language and take the non-verbal cues he'd give us about different foods.  He is still partial to "crunchies" (i.e., hard exterior such as fish sticks or chicken nuggets) but he's now expanding his palette into things such as apples, grapes, quesadillas, meatloaf, roasted potatos, and of course french fries!

Food is fun again for Xavier.  I'm not sure if it's one of the benefits of the surgery, but hey I'll take what I can get!  He is eating everything these days and is loving life.  So I'd say be patient with the problem feeders and picky eaters.  Don't allow the child's behavior to consume you...just roll with it and things will get better.  Time has a way of working things out, mind you this is year seven for us! 

Take care all you mom's and dad's out there.  Gotta love the crazy stages of childhood!

Dear God, you are truly our Father-the Father of Mercies and the God of all consolation.  your mercies are new every morning, and great is Your faithfulness. You have chosen the weak things of the world to confound the strong.

O God, You have seen fit in Your plan of salvation that my child should labor under a difficulty which others do not have.  It is hard at times, O Lord, to see my child endure this handicap.  yet at other times this handicap allows my child to draw closer to my heart than ever, for it shows the vulnerability and child-likeness of us all.

O Lord, I ask You to bless my child with Your grace and peace.  I pray that You would heal and restore my child, according to Your Will.  Even so, Father, I accept that You may choose to bring complete healing only in eternity, when every tear shall be wiped away.

Father, I pray for the grace to love my child and even to embrace his/her handicap, which You have allowed for Your own purposes.  Fill my child, the light of my eyes, with Your presence, and in his/her weakness may Your power be made perfect.  Thank You for the gift of our child to our family and our world.  May You receive all the glory and the praise through our child as well.

Dear Blessed Mother Mary, you know what it is like to bring a special child into this world.  You had unique challenges in raising God's only Son, but God always gave you the grace to accomplish His perfect Will.  In like manner I beg your intercession before the throne of God.  Please help me love and cherish my child and raise him/her as best I can to become a vibrant witness to God's unconditional love.  Amen

Xavier has taught me many things but one of the hardest lessons has been letting go.  Today I write while in a quieter home, notice I said quieter and not quiet...we still have two little ones making lots of noises.  Anyhow, the home is quieter because Chris and Xavier have driven up to NC to do some advocacy work.  They are helping Physical, Occupational and Speech Therapists-in-training at Western Carolina University. 

It saddens me a bit because I remember the years of it just being the three of us...we used to love talking to the therapists and sharing our story together.  It was fun, kind of like a high for me.  I would become invigorated by sharing our struggle, knowing it would help others gave me a sense of purpose. Letting go of what "I want" and doing what is best for the whole family means me letting go of my "high" and putting my priority on the girls.  Especially Lucy who is in desperate need of SLEEP!! 

At 8 months old she still is not sleeping through the night and wakes up sometimes 10 times per night looking for mama!  Rearing two typically developing children along with a child with special needs is a big lesson in letting go.  In her short 8months of life, Lucy has learned to deal with many changes including the inconsistant sleep routine of three weeks in the hospital, two weeks in NC when daddy was in the field training and mommy had no help as well as the usual challenges of early babyhood such as teething (she now has four teeth)!  Needless to say, the only consistent sleep Lucy has gotten has been while either at mama's breast or in mama's arms.  Now mama is exhausted and is desperate for Lucy to sleep in the crib.

As I write this, I've been interupted 10 times by MaryElizabeth desperate for the attention all two-year-olds crave. Anyhow, letting go means missing out on some things but gaining others. I miss being with Xavier and Chris doing advocacy work and teaching therapists, but I am gaining sanity in the sense that my two-year-old and 8month old have both taken great naps today!  I have gained a sense of self denial in trying to let go of what I want and letting God's work be done.

To all you mom's out there, bless you in your endeavors of letting go!  My love to you all!

I just wanted to give a shout out to the wonderful family that we are blessed to have!!  Featured above are Xavier's sisters and cousins: From Left: Ryan Kaye (7y/o), Conner Kaye (12y/o), Grandmom Micki, Xavier Snipes (7y/o) on his Birthday! Mommy holding baby sister Lucy Snipes (7mo) Brookie Kaye (5y/o).  Front Row: MaryElizabeth Snipes (2y/o) and Harrison Kaye (5y/o).  We are all so blessed to have these beautiful children in our lives.  Motherhood can be exhausting, difficult and rewarding at the same time.  Here is a beautiful prayer that I say when times are tough and times are good to help me persevere in my career as mother!

Dear Mary my Mother, I rejoice in the gifts of these beautiful children God has given to my husband and me.  Grant that my little children may teach me of the ways of God.  When I see their eyes, I am reminded of the innocence of Jesus.  May my children's ready smile remind me of God's great and unconditional love that is always there for me.  may the helplessness and vulnerability of my children remind me that I too am a little child in the eyes of my heavenly Father.

Dear Mother, may my children's first attempts to speak help me remember the Wisdom of God which spoke the universe into being.  May my child's complete trust in me lead me to put my total trust in God.

O Mary, my children and I already share a deep affection and bonding.  Help me to deepen my own love for my Heavenly Father, a Father Who cares for me, Who provides for me, Who protects me and Who is leading me to eternal life with Him.  O my God, I believe in You, I hope in You, I adore You, and I trust You.  Have mercy on all the mothers of this world and grant them also a true spirit of motherhood that they will love and cherish the children You have generously given them.  

Dear God, You have given so much to me.  I ask Your power and anointing to be the best mother I can be for my children, and all this I ask through the intercession of Mary, My Queen and my Mother! Amen

I will survive!! I love that song, not only does it have a great dance beat, but it also reminds me that pure determination can be an asset to getting you through the tough times. Lord knows that determination is a necessary survival skill in parenting but interestingly enough so is humility. I find myself asking WHY frequently.

• Why does Xavier have to go through the surgery and everything else just to end up with more seizures?
• Why does my 2y/o already act like a teenager...NO...I can do it myself...Leave me alone!!?
• Why can't my 7month old sleep in her crib yet?

The answer to all of these questions is to teach me humility another words: ITS NOT ABOUT ME!

St. Thomas describes humility as: "The virtue of humility", he says, "Consists in keeping oneself within one's own bounds, not reaching out to things above one, but submitting to one's superior" (Summa Contra Gent., bk. IV, ch. lv, tr. Rickaby).

Humility and Determination are definite survival skills in parenting my three children.  I love them dearly, but if I thought for one second that it was "all my great parenting" that got us through each day I would have a rude awakening.  I find that being humbled is a painful but loving process, similar to natural childbirth!  No one really likes birthing a baby, but the reward afterward is amazing and beautiful.  It also changes you into a new person (no matter if it's your first, second or tenth child).  You are a new person.

In reflecting on the last few days I have found that growing in the virtue of humility is what I need to learn to embrace everyday.  Xavier, MaryEliz, and Lucy need their mommy to be loving, humble and willing to empty herself to give all that I can.  Thank goodness for a loving husband, my parents, friends and of course God who fill me back up because I know I will survive.  Hey, I've got to...tomorrow is another day.  I've got to wake up and do it all over again but hopefully I'll do it better by learning from today's mistakes.

Greetings

I just wanted to let everyone know that we will be adding the Mom's Corner to Xavier's site.  Xavier told me that he wanted his mommy and sisters to share some stuff that we've learned over the years ....especially the hard stuff that keeps us going.  In my corner I'll be discussing things from the everyday stuff from picky eaters and problem feeders to more intense emotional stuff like the grief and loss cycle.  I won't be as advanced in my postings and video diaries as Xavier and his daddy are but the girls and I will try to add our experiences to shed some light on the way a child with a disability adds joy and sorrow to the life of a family.  God Bless!