My Amazing life, at least it is to me!

The blades of the grass softly whispered their song in my ear, as I laid sprawled out on the checkered cloth, enjoying our teddy bear picnic. Momma made our childhood magical. From tea parties in the garden, family night games of drawing in the dark and Red hots in our hot cocoa while we stared through the skylights waiting to see a glimpse of Santa’s slay.

Daddy read every book series out there in the 80’s to my baby sister and I. You see Little House on the Prairie was my favorite. My momma fixed My sis’ hair like Laura Ingalls and I always looked liked Nellie Olson. I guess that could be why it was recommended that I revisit kindergarten for the second time. To learn better social skills. Apparently I thought I was the teacher.

That same year my older sister Christie was married in March. I was dripping in cream lace and peach flowers. It snowed that morning.

Now there is only 3 of us siblings at home. By the time I was 10 my brother moved on and I became the oldest.

I debated my way through jr high. Danced on the hearts of many in drill team and in my senior year was captain of the cheerleadering squad.

The van was bulging at the seems. My Nellie belle, a 71 VW bug, was in tow behind. Off we went to Southern California from suburbia, conservative Idaho. Nothing could have prepared me for that eye opening experience into the world. I graduated co-valedictorian with a degree in Interior design.

I tempered with fate, falling for business in front and party in the back, criminal boy.

4 months later pregnant and married. Then 4 years later contemplating suicide and drowning in depression. I tidied up and threw away the debris. My little boy, Gavin and I had a vibrant new beginning.

My heart flutters, swooning over the freckled faced red head. Was it Love at first sight? Matt and I met on June 9th, a month later at minor league baseball game I was wrangled into playing a game on the field. Guess what’s in the box! The last box was a ring, Matt was on bended knee in front of a crowd of thousands professing his never ending love to me. A month later we were married in a funeral home. We drove away hearing the clanging of tin cans behind the hearse.

Shortly after Samis 2nd birthday the Economy tanked and we moved half way across the states to Texas. The next to come was my Izzy bug. Now there’s 3. We were happy and fulfilled. Life was planned out, little did I know that God had other plans. After a failed vasectomy, we were expecting our 4th child.

I stood there knowing that was the last time I would see my daddy. His raspy voice said I love you and drive safely. 26 hours later we pulled into the driveway. At 11pm the call came in, daddy was no longer in pain. We honored daddy by naming our 4th child after him, Charliedawn.

Early Wednesday morning my husband and I were crammed on a small bench in the NICU. The sun filtered in warming the ice cold room.

The room became a blur, my head was spinning and the tears stung my cheeks. Words were spewing out of their mouths like lava hitting the ocean; vegetable, no quality of life, will NEVER know who you are and won’t live past 6 months. Our world fell apart.

The phone rang, on the other end was the PICU Hospitalist. My breathing quickened, my heart sank and the words “nothing more we can do” echoed in my ears. However by the end of the day Charliedawn starred death in the face and screamed I’m not done yet! It’s my birthday and I made it to 1.

Shortly after Charliedawns trach surgery, the 3 kids and I crammed into the mini van and ventured out to the next chapter in our lives.

Cactus and rocks as far as you could see was our landscape of our future.

Maybe the journey isn’t so much about becoming anything. Maybe it’s about unbecoming everything that isn’t really you, so you can be who you were meant to be in the first place.

Heather Rinard

Fun on St Patty’s Day

Every March 17, St. Patrick’s Day is celebrated with parades, parties, and a lot of green. This date marks the death of Saint Patrick, the Patron Saint of Ireland. … Today, the holiday has evolved to become a secular celebration of Irish culture. Green garb, leprechauns, pinching, drinking, partying, parades, more drinking.

With all this celebrating how can we include our children?

Eat all things green

Celebrate the day by feasting on all things green. For breakfast, try some green eggs and ham while reading the Dr. Seuss book to your kids or dye your pancakes green just for fun. For lunch, try serving up a buffet of green foods – broccoli, celery, salad, guacamole, and grapes. Wash it all down with some green juice. Who knows? Maybe your child will try some new foods trying to get good luck on St. Patty’s Day.

Set a leprechaun trap

The night of the 16th, have your kids set a leprechaun trap using a box or laundry basket. Put gold coins inside to attract your leprechaun, but remember, leprechauns are very sneaky and do not like to be seen. In the morning, your child may awake to see that the leprechaun has taken their gold coins and left them a small gift or treat.

Make slime

Have you heard? Slime is all the rage. This borax-free recipe is great to squish and stretch. Get the instructions: littlebinsforlittlehands.com

St. Patrick’s Day Math

Don’t let your brain turn to green mush. Play this fun St. Patty’s math game with the kids. Play it here: coolmath-games.com

Prepare Irish Potato Candy

Despite not containing potatoes or being from Ireland, this simple, no-bake confectionery treat was developed in Philadelphia by Irish immigrants, and it remains a St. Patrick’s Day tradition in the City of Brotherly Love. 

These delicious cinnamon-coated sweets resembles miniature potatoes and are often rolled into potato shapes and served in a “potato sack” (a brown paper bag).

You’ll need

  • ¼ cup butter, softened
  • 4 ounces cream cheese, softened
  • 1 teaspoon vanilla extract
  • 4 cups powdered sugar
  • 2 ½ cups sweetened flaked coconut
  • 1 ½ teaspoons cinnamon

Here’s what to do:

1. Beat butter, cream cheese and vanilla together. 

2. Slowly add the powdered sugar. 

3. Then, mix in coconut and stir until well-blended.

4. Form tablespoon-sized balls, roll in cinnamon and roll each one into a potato shape. 

5. Place the pieces onto a foil-lined cookie sheet and chill until set. Keep them in the refrigerator until serving time.

The Benefits of Inclusion

Children with Special Needs

•affords a sense of belonging

• to the diverse human family

• provides a diverse

stimulating environment in

which to grow and learn

• evolves in feelings of being a member of a diverse community

• enables development of

• friendships

• provides opportunities to

• develop neighborhood

friends

• enhances self-respect

• provides affirmations of

individuality

• provides peer models

• provides opportunities to be

educated with same-age

peers

General Education

provides opportunities to experience diversity of society on a small scale in a classroom

develops an appreciation that everyone has unique and beautiful characteristics and abilities

develops respect for others with diverse characteristics develops sensitivity toward others’ limitations

develops feelings of empowerment and the ability to make a difference increases abilities to help and teach all classmates develops empathetic skills provides opportunities to vicariously put their feet in another child’s shoes

Teachers

• helps teachers appreciate the diversity of the human family

• helps teachers recognize that all students have strengths

• creates an awareness of the importance of direct individualized instruction

• increases ways of creatively addressing challenges

• teaches collaborative problem solving skills

• develops teamwork skills  acquires different ways of perceiving challenges as a result of being on a multi-

disciplinary team

• enhances accountability

skills

• combats monotony

Society

• promotes the civil rights of all individuals

• supports the social value of equality

• teaches socialization and collaborative skills

• builds supportiveness and interdependence

• maximizes social peace

• provides children a

miniature model of the democratic process

Benefits of Inclusion

Inclusion: Maximizes Individual Growth and Builds a Sense of Community

• enhances appreciation for the diversity of the human family

Source: “Creative Educators at Work: All Children Including Those with Disabilities Can Play Traditional Classroom Games,” by Donna Raschke, Ph.D., and Jodi Bronson, Ed.S., 1999 http://www.uni.edu/coe/inclusion/philosophy/benefits.html

Save the Date for the 2020 Family Conference on Holoprosencephaly

Jack Wilson has attended every conference that Families for HoPE has conducted, and he has been busy today making phone calls to make sure his friends save the date for the 2020 Family Conference on Holoprosencephaly!

Please watch this video of Captain Jack in snowy Wisconsin calling his friend Brianna in New Jersey to share the exciting news with her.

Our friends at Great Wolf Lodge in Mason, Ohio loved our HPE families so much in 2018 that Families for HoPE has decided to return!  Save the dates of June 14-17, 2020!  We have informed the teams at the Carter Centers and the NIH, and they are excited to be joining us all once again!

Additional details will be announced in the weeks to come regarding registration fees, volunteer opportunities, and more!

IMGP8153

Rare Disease Day

What is holoprosencephaly?

Holoprosencephaly is an abnormality of brain development in which the brain doesn’t properly divide into the right and left hemispheres. The condition can also affect development of the head and face. In general, the severity of any facial defects corresponds to the severity of the brain defect. The most severely affected people have one central eye (cyclopia) and a tubular nasal structure (proboscis) located above the eye. In the less severe forms, the brain is only partially divided, and the eyes usually are set close together. Other signs and symptoms often include intellectual disabilities and pituitary gland problems. Holoprosencephaly can be caused by mutations in any of at least 14 different genes; chromosome abnormalities; or agents that can cause birth defects. It may also be a feature of several unique genetic syndromes. In many cases, the exact cause is unknown. Life expectancy for people with this condition varies, and treatment depends on the symptoms and severity in each person. (https://rarediseases.info.nih.gov/diseases/6665/holoprosencephaly/cases/27877)

Subdivisions of Holoprosencephaly

*Alobar, in which the brain has not divided at all, is usually associated with severe facial deformities. 

*Semilobar, in which the brain’s hemispheres have somewhat divided, causes an intermediate form of the disorder. 

*Lobar, in which there is considerable evidence of separate brain hemispheres, is the least severe form. In some cases of lobar holoprosencephaly the baby’s brain may be nearly normal.

Causes

Holoprosencephaly is a birth defect that arises during the first few weeks of the pregnancy. Diabetes in the mother during the pregnancy can increase the risk of holoprosencephaly in the fetus. However, for most children, no known intrauterine exposure is identified that is causally related to holoprosencephaly in that child.

Some children will have an identifiable genetic cause of holoprosencephaly. Approximately one-third of children born with holoprosencephaly have an abnormality of the chromosomes, which contain the genetic material (DNA). The most common chromosomal abnormality associated with HPE is when there are 3 copies of chromosome 13 (trisomy 13), although a number of other chromosomal changes can also cause holoprosencephaly.

In other children, holoprosencephaly is due to a change in a specific gene. These changes cause the genes and their proteins to function abnormally, and this affects the development of the brain, resulting in holoprosencephaly. Some of these genes are SHH, SIX3, TGIF1, ZIC2, PTCH1, FOXH1, NODAL, CDON, FGF8, and GLI2. Holoprosencephaly can also occur in certain genetic syndromes in which there are other medical issues besides those mentioned in this report that affect organs in addition to the brain and face (e.g., Smith-Lemli-Opitz syndrome).

Despite the above understanding of the causes of holoprosencephaly, the exact cause of the condition is not identified for many individuals. There are likely to be additional genetic causes other than those already known and mentioned above. (https://rarediseases.org/rare-diseases/holoprosencephaly/)

Helpful tips with an IEP

Image result for IEP

An IEP is the individualized education plan, a document written for a child with a disability that identifies needs, sets goals and lists services to insure optimal educational and vocational outcomes. Often the IEP process can be intimidating and overwhelming to parents. The following will help parents become engaged participants in the development and implementation of an effective IEP.

Ask clarifying questions

• Ask participants to clarify education jargon.

• Make sure you completely understand your child’s actual diagnosis.

• Ask clarifying questions about start dates, length of services, and the procedure for receiving the appropriate accommodations.

• During each meeting, be sure to ask questions about the IEP goals that have been set and whether they are being met. If your child has not met the goals, don’t be afraid to ask what the next steps are toward meeting the goals and whether the goals should be revised.

Set Goals as a team

• Ensure that you understand, agree with, and have contributed toward the goals set for your child. For instance, during one of my daughter’s IEP meetings, I discussed my child’s quiet personality and mentioned that she needed a speech therapist who would understand the importance of developing a relationship with her before proceeding with the implementation of the goals. You are your child’s first teacher. The knowledge you have about your child should be shared with and welcomed by the IEP team in order to achieve success.

• Be sure that you, the assigned specialist, and your child’s classroom teacher are partners, working toward the same goals, and that the accommodations and services carry over into the classroom and into the home. During the IEP meeting, ask questions to ensure that all parties involved set specific dates to collaborate with one another periodically throughout the academic school year.

Understand the IEP Process and Know Your Rights. 

It is of paramount importance to read up on the IEP process, become familiar with IDEA (Individuals with Disabilities Education Act), and understand your rights as a parent. In addition to studying the law, many parents seek advice from an advocate and network with well-informed parents who have first-hand experience with the IEP process in their school district.

Make All of Your Requests in Writing

All requests should be made in writing to create a documentation trail that provides a history of the child’s academic needs and requests to the school district (e.g., requests for an IEP meeting, an assessment of any kind, or a classroom placement recommendation). It also allows you to state your requests in your own words. In addition, ask the IEP committee to record these written requests as part of the minutes in an IEP meeting. The IEP committee can accept or deny these requests. If the committee denies the requests, then they must follow the procedural safeguards in IDEA and provide written notice of why they are denying your request. If the request is not documented in writing, the school district is not required to provide the service. (Be Familiar with Prior Notice of the Procedural Safeguards (34 CFR 300.503))

History of Saint Valentines

The Legend of St. Valentine

The history of Valentine’s Day–and the story of its patron saint–is shrouded in mystery. We do know that February has long been celebrated as a month of romance, and that St. Valentine’s Day, as we know it today, contains vestiges of both Christian and ancient Roman tradition. But who was Saint Valentine, and how did he become associated with this ancient rite?

The Catholic Church recognizes at least three different saints named Valentine or Valentinus, all of whom were martyred. One legend contends that Valentine was a priest who served during the third century in Rome. When Emperor Claudius II decided that single men made better soldiers than those with wives and families, he outlawed marriage for young men. Valentine, realizing the injustice of the decree, defied Claudius and continued to perform marriages for young lovers in secret. When Valentine’s actions were discovered, Claudius ordered that he be put to death.

Did you know? Approximately 150 million Valentine’s Day cards are exchanged annually, making Valentine’s Day the second most popular card-sending holiday after Christmas.

Other stories suggest that Valentine may have been killed for attempting to help Christians escape harsh Roman prisons, where they were often beaten and tortured. According to one legend, an imprisoned Valentine actually sent the first “valentine” greeting himself after he fell in love with a young girl–possibly his jailor’s daughter–who visited him during his confinement. Before his death, it is alleged that he wrote her a letter signed “From your Valentine,” an expression that is still in use today. Although the truth behind the Valentine legends is murky, the stories all emphasize his appeal as a sympathetic, heroic and–most importantly–romantic figure. By the Middle Ages, perhaps thanks to this reputation, Valentine would become one of the most popular saints in England and France.

@historychannel

Person Centered Planning

What is person centered planning?

A person centered plan can help those involved with the focus person see the total person, recognize his or her desires and interests, and discover completely new ways of thinking about the future of the person.” — Beth Mount & Kay Zwernik, 1988

Person Centered Planning is an ongoing problem-solving process used to help people with disabilities plan for their future. In person centered planning, groups of people focus on an individual and that person’s vision of what they would like to do in the future. This “person-centered” team meets to identify opportunities for the focus person to develop personal relationships, participate in their community, increase control over their own lives, and develop the skills and abilities needed to achieve these goals. Person Centered Planning depends on the commitment of a team of individuals who care about the focus person. These individuals take action to make sure that the strategies discussed in planning meetings are implemented.

Purpose

To look at an individual in a different way.
To assist the focus person in gaining control over their own life.
To increase opportunities for participation in the community.
To recognize individual desires, interests, and dreams.
Through team effort, develop a plan to turn dreams into reality.

How do you know it’s person centered planning?

• There is a guiding vision evident

• It is rooted in respect for the person and a commitment to build inclusive communities

• Family members and friends are full partners

• The focus is on developing capacities

• Hopeful action happens

• Listening and learning continue

There are a variety of planning formats including:

• personal future plan

• PATHS

• Maps

• One page Descriptions/One page Profiles

• Person centered descriptions/Essential Lifestyle planning

• Group action

The start of Inclusion

Martin Luther King, Jr., Day, in the United States, holiday (third Monday in January) honouring the achievements of Martin Luther King, Jr. A Baptist minister who advocated the use of nonviolent means to end racial segregation, he first came to national prominence during a bus boycott by African Americans in Montgomery, Alabama, in 1955. He founded the Southern Christian Leadership Conference in 1957 and led the 1963 March on Washington. The most influential of African American civil rights leaders during the 1960s, he was instrumental in the passage of the Civil Rights Act of 1964, which outlawed discrimination in public accommodations, facilities, and employment, and the Voting Rights Act of 1965. King was awarded the Nobel Prize for Peace in 1964. He was assassinated on April 4, 1968.

Legislation signed in 1983 marked the birthday of the Rev. Dr. Martin Luther King, Jr. as a federal holiday. In 1994, Congress designated the Martin Luther King Jr. Federal Holiday as a national day of service and charged the Corporation for National and Community Service (CNCS), the federal agency that leads service and volunteering, with leading this effort. Each year, on the third Monday in January, the MLK Day of Service is observed as a “day on, not a day off.” MLK Day of Service is intended to empower individuals, strengthen communities, bridge barriers, create solutions to social problems, and move us closer to Dr. King’s vision of a “Beloved Community.”

What is inclusion?

• All children can learn

• All children can attend age appropriate educational classes in local schools

• All children can receive appropriate education

• All children receive a curriculum/extra curricular activities that meet needs

• All children benefit from collaboration

Inclusion is the educational practice of educating children with disabilities in classrooms with children without disabilities.

Set the bar high, it’s ok to fail and not reach the bar, but it’s not ok to set the bar low and reach it and give up

NIH Study on Environmental Determinants of Holoprosencephaly

NIH Study on Environmental Determinants of Holoprosencephaly

We understand only a fraction of the causes of holoprosencephaly and what
leads to the wide spectrum of clinical features seen in patients with
holoprosencephaly. In this environmental study, we are trying to better
understand the different factors that can contribute to holoprosencephaly and
its presentation that often varies from patient to patient.

What does the study entail?
Filling out out a 45-minute online survey

What does the survey ask about?
The survey asks about your pregnancy and the three months before
pregnancy.  Please go to http://hope.ctss.nih.gov to get more information.

We are actively recruiting to reach our study goal of 200 participants!

If you are interested in filling out the survey:

  1. Contact Yonit Addissie at yonit.addissie@nih.gov or 301-402-5812
  2. Then, go to http://hope.ctss.nih.gov

*There is no compensation for this study

#GivingTuesday

Want to join us in supporting a good cause? This #GivingTuesday We are raising money for Families for HoPE, Inc. and your contribution will make an impact,

Click on this link to donate:

https://www.facebook.com/1491770389/posts/10213304817283568/

Online Shopping

Halloween Costume contest

Families for HoPE annual Halloween costume contest has begun!

Get in your entries!

1st prize $150

2nd prize $100

3rd prize $50

https://www.gogophotocontest.com/familiesforhope

More children after HPE

By Abby Handy

It’s 2am, and I’m laying in bed wide awake with my baby girl sleeping half way on me. I can barely move and the hand I’m using to type this with is just about numb. But, there’s really no other way I’d have it.

If you would have asked me 14 years ago if I’d be a stay-at-home mom of 3 kids, I either would have laughed in your face or passed out in shock. Why is that? Well, 14 years ago I gave birth to my son, Eric Ryan. He was 1 lb 10 oz and if being a mega preemie wasn’t enough, we would soon find out he had Holoprosencephaly.

I was 23 years old and Ryan was my first pregnancy. The problems started early on. Severe morning, noon and night sickness along with back pains. I was constantly at the doctor’s office and even hospitalized during my first trimester. Put on bed rest early into my second trimester, no hint that anything medically wrong with him was ever mentioned. So laying in my hospital bed after waking up from my c-section, no baby in my room was heartbreaking. I didn’t see Ryan’s face to face until two days later because I wasn’t able to get out of bed. I could hear babies crying in other rooms and that longing for him was unbearable.

When I finally did see him I felt helpless, I was afraid to touch him, afraid to breath on him and there was no way of holding him. We couldn’t see his face with all the tape and tubes. He was so tiny, he didn’t look human. Scrubbing in, scrubbing out became our world. My recovery was slow and painful but that was all covered up and not spoken of because all focus was put on Ryan and getting him big and healthy enough to come home. We were encouraged to sign away our parental rights when he was 3 months old since and I quote “He is going to die soon anyway and we should move on with our lives.” But instead of listening to those doctors advice, we vowed he would always be surrounded by love, no matter how short his life was going to be. So with a binder full of instructions including Ryan’s daily medication & feeding routine, a calendar full of doctor and therapy appointments, a list of emergency numbers and supply companies, we headed home. Ryan was 4 months old. I don’t remember being nervous or scared, there was no room in the binder for that. I was numb and just followed the outline in the binder. We had a home nurse 8hrs a day, 5 days a week. Teaching me, grooming me and sometimes mothering me, but guiding me to be the best mommy nurse I could be. Daddy was working long hours and out of town on business a lot so my world was Ryan and all his hourly needs. We were in and out of the hospital but I knew that binder like the back of my hand. I could recite from memory all Ryan’s 20 plus medications, include how to spell them, dosages and times given. I knew all his upcoming appointments and nurse schedules. I was on it and in time I was that binder come to life! People would ask us if we were going to have another baby and I would laugh. There was no way I could fit another child into this life, into the binder! We hadn’t done any detailed genetic testing so that was a huge concern. But how would I do it day by day with another child and our busy schedule with Ryan?

Well 5 years later I would find out! What a difference 5yrs made in Ryan’s life. Yes, he still had all the same severe medical issues he was born with, but in time we figured them all out the best we could. He was on a new list of medications with new specialists and things were as “controlled” as they could be. We knew what Ryan’s signs were of sickness for the most part and his hospital stays were down to just a few a year. We managed his doctor and therapy appts so we weren’t out of the house 5 days a week. Ryan was even going to school on a regular bases! Something I never would have thought possible.

Pregnancy #2 started off about the same as Ryan’s with morning, noon and night sickness. But it wasn’t as severe and no major back pains. I was considered high risk because of Ryan’s prematurely and HPE, so we saw a specialist. I was on weekly progesterone shots and even had a cerclage followed by bed rest at some point. We new as early as possible that this baby boy, Dominic, was healthy and had no signs of HPE. We even received the genetic test results that had been done for free at the HPE Family Conference that there was no genetic link found, I was 6 mths pregnant at the time.

I went into labor at 36 weeks on the day of Ryan’s preschool graduation. I’ll never forget that day. I was at the out patient part of the hospital for a non-stress test and apparently, was in

labor. They wanted to admit me right away. The nurse called my dr because I was refusing and became an emotional mess. I told my doctor it might be the only graduation I got from Ryan and there was no way I was going to miss it! Besides, his school was full of nurses and even a paramedic would be there, I wasn’t worried about it! So with the promise to return straight after the ceremony, I drove myself in early labor to Ryan’s graduation. As promised we returned right after and I had my c-section a few hours later.

To hear my baby cry as he took his first breath in this world was so wonderful. But was quickly overcome by a sudden rush of fear, needing to be reassured he didn’t have any deformities. What was his birth weight? Why had he stopped crying? Laying there as they closed me up begging daddy for second by second updates. Just tell me his stats!!! The all to familiar feeling of helpless went away the moment daddy walked past the barrier sheet with tears in his eyes, holding our Dominic. Our perfect, healthy, beautiful Dominic.

We were rolled into the recovery room, Dom was placed on my bare chest and for the 1st time I got to breast fed my baby. I got to immediately bond with him and love on him. I got to hear how well he was doing, how perfectly normal everything was going. He got to come with me to my room and I didn’t take my eyes off him for a second. In those moments I was over come with joy and happiness.

The next morning as my new reality sank in, the guilt and sadness of all I missed out on with Ryan slowly sank in as well. This was something I could have never prepared for, this was not in the binder. I should have been basking in the glory of having a beautifully healthy baby, and I was, I really was extremely happy. But there is a such thing as being happy and sad all at the same time. I longed for Ryan once again as I had the day he was born. I just wanted to hold him & love on him and let him know that he was still my number 1. That just because he had another baby didn’t mean I was going to forget him or his needs. That I was the same dedicated mommy as I ever was. I felt guilty. Guilty for having another baby and guilty for what this would mean to Ryan and his care. Because what if I couldn’t handle it all? What if I couldn’t give Ryan the attention and care he needed, that he was used to? Would his health decline? Would he be sad? Would he feel as if he wasn’t enough, that I wasn’t there for him anymore? How was I going to handle having another baby?! What was I thinking?????!!!!!!

But I guess that’s kind of the point…I never “thought” too much about it all, I just did. I did what had to be done regardless of my feelings or really anyone else’s. I get asked a lot, “how do you do it?” My answer has always been, “ I just do.”

So after my mini internal meltdown, I decided I’d do as I always had. Taking it minute by minute, hour by hour, day by day. The day Ryan came home from the hospital I lost control to the binder and never truly got it back. It had worked for 5yrs so why change it now?

As we prepared to leave the hospital and the nurse had given our discharge orders, she asked if we had any questions. Mine was, “What do we do now?”. Her answer, “you go home and raise your baby”. What did she just say? We just go home? No daily, hour by hour schedule to follow? There won’t be a professional nurse waiting at my home to help me? Where the heck is my new binder?! Shock is an understatement.

We went home and began our new lives. My recovery was a lot easier and although Ryan showed signs of jealousy and not appreciating having to share me, like any 5yr old with a new sibling would, Dominic soon grew on him and a place I never knew was empty in our lives was filled. It wasn’t all easy. Me being able to go sleep by Ryan’s unpredictable sleeping pattern came to a crashing end and a new med was added to the list to help him sleep though the night. Ryan got his own room, with a big boy bed and decorations. After all, he’s a big brother now.

Life was definitely more complicated now. Figuring out how to push a wheelchair and hold a baby carrier was interesting. I was touched when people asked if I needed help but always refused in fear if I let one thing go, everything would come tumbling down.

Ryan had his 1st after brother hospital stay when Dominic was about 6mths old. Luckily my niece was living with us at the time so I was able to spend my days at the hospital and daddy took over nights. I gained a whole new fear during this stay. What if Ryan dies and Dom never knows him? Ryan is the center of our lives and for him to be gone and Dom to never know this,

was unfathomable to me. Thank God Ryan pulled through and it was only about a 2 week stay. But that thought was always in the back of my head.

Over the next few years, Ryan was in and out of the hospital and that was a norm for Dominic. He loved spending the night with us there and playing in the kids area. The staff was always so accommodating and never gave us issues for Dominic being there so much. We never really explained much to Dom, just that brother was sicky. Then about 3yrs ago, Ryan had to be rushed to the ER due to seizures. This was the worse cluster he had in years! Emergency med after emergency med was given with no end to them in sight. Dom was 6yrs old at the time, in the ER with us and was fully aware of what was going on. The staff tried to distract him while grandpa was on his way to pick him up. But Dom must of seen on my face that this time was different. For the 1st time in a long time I struggled to keep it in. I just kept thinking this might be it and it’s going to happen in front of Dom. As I stood there by Ryan’s bedside, Dom came beside me, hugged me and asked me, “Mom, is Ryan going to die?” I squeezed him tight, couldn’t even look at him and just said, “I don’t know baby. But I don’t want you to worry about that right now ok.” Holding back tears he said ok and went back to playing the video game they had brought him. Shortly after that, Dom left with grandpa and Ryan stabilized. I couldn’t help but think of my fear when Dom was 6mths old. The fear of Dom never knowing Ryan. But was this worse? Would Dom’s pain of loosing him be worse then my pain of him never knowing Ryan?

I guess that’s a question many of us with children after a severely disabled child will eventually have. Dominic is very mature for his age in many ways. Maybe it’s because he’s had to be living with a special needs sibling. He’s had to be more independent because mommy was sometimes too busy with Ryan’s care. Or maybe it was because we don’t hide the passing of Ryan’s special need friends from him and he knows one day it will be Ryan. Dominic isn’t the type of child who likes to talk about his feelings, he probably gets that from me. But he does know he can ask and talk to us about anything and we have never lied to him.

Now that Dominic is a big brother himself to our precious AvaJae. Life has once again changed. The guilt and sadness wasn’t so overwhelming as with Dom’s birth. But it definitely was there deep inside. I can honestly say life is complete with her being here. For years Dominic asked for a sibling “like me”. Meaning not special needs. “I love Ryan Mom, but I just want someone like me”. I completely understood and God granted him his wish. The bond he has with her already is undeniable. He’s such a great big brother and little big brother to Ryan. I try not to think about Ryan passing and what that would mean to Dominic or AvaJae. We still live minute by minute and hour by hour.