Hi Lori, if you would like my thoughts about the blessings of autism, let me know.Thanks.

Hello, I’d be happy to contribute our experience with premature birth and hospitalization

Hello! The timing of this is pretty good.  My husband and I adopted a nearly 7 yr old son from China last December.  We knew he was born missing three ribs and as a result has developed scoliosis. The surgeon we are going to work with to insert titanium ribs and a growth rod in his spine requested we have a MRI done because none had ever been done for him in China.  We got the results back last Monday and I have to say I’ve been overwhelmed since.  He has several other conditions involving the spinal cord which are forms of spina bifida.  It means neurosurgery instead of just the orthopedic surgery.  It’s more complicated than I ever imagined it would be, and bringing home a nearly 7 yr old boy is complicated in and of itself, leaving aside all his medical needs.  Need some prayers.

I have no personal story to share…but I did want to say God bless all you moms (& dads!) who have loved, cherished & cared for your children through many medical & emotional difficulties.  I pray that your stories are a witness to a culture that is increasingly hostile towards those who are deemed “imperfect” by our warped society’s standards.

I have a 3 year old daughter that has a rare chromosomal abnormality.  We have had and continue to experience multiple blessings having her in our family.  I would be willing to share our story with you.

Just over 4 years ago my husband and I found out we were expecting a baby.  Boy were we excited since we were just married 3 months prior.  However about halfway through what seemed like a normal run of the mill pregnancy (compared to what I had seen and heard from my Moms with my younger siblings) turned into a nightmare.  We were told by our OB that our baby had an irregularly fast rate and it should slow down. It never did.  Then at 30 weeks we had an appointment with a perinatologist who promptly put me on hospitalized bedrest. They gave me oodles of Digoxin to get babys heart rate to slow down.  Then after about 5 weeks of living at the hospital; they stopped the meds because my liver was becoming toxic. The doctor then gave me amnio (I do NOT recommend) to determine lung development. Nope not developed enough so it was time for hormone shots. After that I was able to go home for a week with strict rules and coming in for daily ultrasounds. At one said appointment the nurse found that the sack was detaching and beginning to suffocate our baby. Emergency c-section was planned and drawn out. So now at 36.5 weeks we greeted Benedict Anthony (which we had picked out a name prior to his birth- we did not whether he was a boy\girl so we had a note for either picked—it’s fun thinking about it now since his name means “blessed gift of God”.). He is a very happy go lucky energetic 3.5 year old now; with no foreseen problems in the future.

God bless all families!

God bless all of you awesome moms!

Lori—if you are looking for support for your son’s particular diagnosis, Jorge Posada (catcher for the NY Yankees) began a foundation after his son was diagnosed with craniosyntosis.  It’s called the Jorge Posada Foundation.

two weeks before our second daughter’s first birthday she received the diagnosis of infant acute lymphoblastic leukemia.  for the next year, esp during the first six months, we got to know the hospital and staff really well.  we never dreamed we would celebrate her first birthday, mother’s day, Easter, father’s day, Memorial day, and the 4th of July surrounded by doctors and nurses.  we even missed my oldest sister maker her Final Profession into the Benedictine Order due to a sudden fever that always meant a trip to the hospital. 
  our families were a great area of support and i never had to worry about who might help out with our other daughter, who was two at the time.  but i was surprised how i was even blessed with support by all the lovely doctors, nurses, cna’s, and child life professionals that made our stays there doable. 
  During all of this, honestly, God and i weren’t big talkers.  i know that i was blessed with a great prayer support system, the nunnies area great, but it took me a good while to be able to get myself back to place where i could realize that pooh happens and it happens to everyone, it just sucks being the one it happens to.  but it is amazing how many blessings in the form of professionals, family, and even nunnies that start to show in your life when all the pooh hits the fan.

When I was 20 weeks pregnant with my second daughter a routine in office ultrasound showed cysts on her brain.  My OB said that it was quite common at that stage and that he would recheck at my next appointment.  At the next appointment the cyst was still there, so I was scheduled for a high level ultra sound at the perinatologist over 200 miles away.  My husband and I went to the appointment and found out that there was no cyst, but that her heart rate was dangerously high, and she was also in the early stages of heart failure.  Many, many appointments and weeks of worrying later, we were told that she was going to be born with hypoplastic left heart syndrome.  Her birth and subsequent open heart surgeries, months in the NICU and PICU and complications - that time was filled with so many blessings.  From faith filled surgeons, doctors and nurses… to the kindness of strangers… finding and renewing our faith and becoming Catholic.  All of this would not have happened without being blessed by that special baby.  My special baby is now a healthy, happy second grader who reminds me every day that God is good ALL OF THE TIME.

I would be happy to share our story of our first son’s lifesaving surgery at 4 days old…to repair a diaphagamtic hernia…was told many times to abort, but they had no idea they were advising a theology/bioethics teacher to abort…our JP is absolutely fabulous…light of our lives…oh,and by tbe grace of God and intercession of JPII, has zero health issues…God is soo Good!

Susie,

I will pray for you and your husband and your son. This is a heavy cross to bear and I know you are strong to hold onto life, even in extreme circumstances.

Two of the faith-filled women at the blog Building Cathedrals had children with anencephaly.

http://buildingcathedrals.blogspot.com/

They’ve written beautifully about the experience. Here’s just one post:
http://www.buildingcathedrals.com/2011/08/22/happy-5th-birthday-in-heaven-lucy-rose/

I hope you are strengthened with prayer and God’s grace, and that the experiences of other parents can help support you.

God bless.

I’d be glad to help out and share our story.  Simon is 6 1/2 and has Pallister-Killian Syndrome.  It’s a very rare chromosome disorder.  More about Simon can be found http://www.simonpeters.org and about PKS at http://www.pkskids.net.  God bless all of you!!

Hi.  I have 4 boys, and the youngest two were born deaf.  We had them implanted with cochlear implants very early and spent their first years working hard to learn language and how to listen and speak.  Two years ago, we found out that the reason for their deafness will also cause them to lose their vision to Retinitis Pigmentosa.  The cause is Usher Syndrome.  We have not told the boys (aged 10 and 5), because we want their childhood to be as carefree as possible, but we have told their oldest brother.  Almost every day, something comes up which reminds me how precious our vision is, particularly in those who have hearing loss (and balance problems, as they do).  Yesterday, for example, my 10 year old participated in his first Triathlon for kids.  Seeing to swim down the lane was crucial, as he had to take of his cochlear implant processors and operate without sound.  And then there is the biking, and even the uneven surfaces on the trail when he ran.  He loves to read, play video games and so many things which require sight, at least the way we do them now.  I have a friend whose daughters also have Usher Syndrome, and she has said that she would not have had her daughters if she had known they had this genetic mutation, despite the fact that they have led happy, successful lives.  Her oldest daughter is getting her Master’s degree and lives in London, and has written books for children.  I am a fairly new Catholic convert, and was holding out on NFP for a few years because I was afraid… afraid of the work involved if I were to have another child with these disability.  I knew people would disapprove and think I was crazy to “risk” it.  However, for a year now I have taken on the fears and have been able to realize how wonderful and precious another child would be for our family.  I got over hoping that we would not have another, and while I am older and unlikely to conceive while we are (mostly) abstaining, I would welcome and enjoy another child if God were to give us another.  They are amazing kids.  They are funny, smart and we have learned so much in the process.  As I sit writing this, my 5 year old is listing orange items as we do his language arts lesson (homeschooling).  My duties are to ensure that he has the best education which I can give him so that he’s prepared to take on the challenges of life, whatever may be ahead.  We will likely soon face vision loss in my 10 year old, as it usually presents in early adolescence.  We pray for a cure, and have been to see a specialist who is working on gene therapy treatment.

Lori, my prayers are with you as you and your loved ones endure this great trial! About five years ago we were in touch for a similar article for “Faith and Family” magazine, and now, inspired by that experience, I am about to publish a book of 33 such stories written by Catholic moms and dads who love children with medical issues and special needs. Maybe you could use one or two of the stories, or interview my authors. You can contact me at .(JavaScript must be enabled to view this email address)

I am amazed at the outpouring of responses!  Sometimes I feel so alone in my Catholic community having a child with special needs, but to see all these other moms walking the road I am walking is inspiring!

My daughter Clare has Williams syndrome, a rare genetic deletion. In her first year of life, she underwent five cardiac procedures to correct severe congenital heart defects. She is now 6 years old, still has ongoing cardiac issues (has had more procedures since those in her first year), and is a joy to everyone! Clare is developmentally delayed with a buffet of other “issues.”

I just wrote the above about my daughter Clare. I wanted to add that I think it is wonderful Faith and Family is doing a piece on children with special needs and their families. I wish more secular magazines would do this as well (kind of like “preaching to the choir” in Faith and Family!). In a culture where these children are often aborted, we need to share with the world what blessings they truly are. That they are NOT drains on our resources, money, and time. My daughter Clare has taught me more about love and humanity than anyone else. She has made me a better parent for being her mom. We have four other children, and I know they are going to grow up to be better human beings having Clare as their sister. Williams syndrome is often described as the “happy” syndrome or having the “happy gene.” It is so much more than that, but these individuals are truly so loving and giving to everyone they meet. They have no stranger anxiety and everyone is their friend (which poses its own dangers in this world we live in). They should BE the norm, not the ones who are “different.” Clare and children like her offer so much to our cynical world!

I would love to share my take… I am a mom to six and my littlest has Down syndrome. He is the greatest blessing.

What would you think if you learned that your unborn baby is expected to live ten days once born (diagnosed with Trisomy 18), if she even survived to a live birth at all? For my wife Kathleen and I, the answer was quite natural but certainly not simple. Through His mercy and grace, we were blessed with Gabriella Joy, born Jan. 6, 2011.

Although it was the darkest and the most heart-piercing time of our lives, we experienced the height, depth and breadth of His love through Gabriella’s life. We can share a number of times of how we heard His loving voice, including: loving Gabriella Joy and our 2 other children, discerning a myriad of health care decisions with limited information, holding her in our arms when she died and listening to His answer of “WHY?!”

Kathleen and I actually celebrate our 12th anniversary today and our life together in Him has truly been a blessing. And even though Gabriella Joy is not physically here with us today, we will never regret a single day she was with us and we look forward to the day we will be with her again in Christ Jesus our Lord.

May His grace and peace be with us all! For His glory. Amen.