1. Send a “Thinking of You” card
2. Give a gift card
3. Make a meal
4. Invite them over for dinner and fellowship
5. Offer to babysit for a date night
6. Pray for their well being

Do you remember as a kid saying “Uncle” when you wanted your opponent to stop? Most of the time for me it was when I was being tickled by my dad or an uncle. For you it could have been a friendly game of wrestling.

According to Wikipedia, the response “Uncle” is the same as saying, “I give up!” It is a form of submission to the other person.

As I’ve gotten older, there have been plenty of times that I wish I could have said “Uncle” in this game of life.

We can’t wait to be a grown-up when we are kids, but honestly, life as a grown-up is HARD.

Our anticipation of Saturday morning cartoons has turned into Saturday morning house cleaning and laundry. Our lives have much bigger responsibilities that affect not only ourselves, but those tiny humans that we are raising. The stress can be overwhelming.

I think most of us are ready to say “Uncle” this year, too. 2020 has not been very kind to us.

I’m sure there have been certain years for you that seemed to keep delivering bad news.

That year for me was 2016. I had a miscarriage. My step-father was diagnosed with glioblastoma brain cancer that made him a person I no longer recognized. My husband had cervical spine surgery that left him out of work for two months. And after I became pregnant with my third child, we learned our son would be born with Spina Bifida and hydrocephalus.

I was ready to say “Uncle.”

But in the ashes there is beauty to be found. That year my husband and I grew closer to each other and to God. We learned the big lessons in life, like what was truly most important. For us that was God, family, church family, friends, and people being the hands and feet of Jesus when we could barely hold it together.

If you know of a family that has a special needs child, please know that even the smallest act of kindness would mean the world to them. 

Being the parent of a special needs child brings with it a whole new set of worries and anxiety. If you’re looking for ways to encourage a special needs family that is hurting, over-burdened, or feeling stressed about ALL THE THINGS, then here are six easy ways to spread the love of Christ.

1. Send a Thinking of You Card

If you know of a family going through a difficult time, send a thinking of you card to brighten their day. Better yet, have the people in your small group or Sunday school class send one as well.

What did that look like for us? Getting card after card each day from people hundreds of miles away just to say they were praying for us during our difficult time. People we had never met, but were willing to share their hearts and lives with us in hopes that it would ease our pain.

Most of the people at my job knew nothing of my miscarriage. Partly because I felt ashamed. Partly because I didn’t want any pity. I was in the midst of training and mentoring two people. Two weeks after my miscarriage one of the guys proudly announced his wife was having their third child. It was all I could do to hold it together. I was ready to say, “Uncle.”

But coming home every day to a mailbox filled with encouraging cards made the pain a little more bearable.

2. Give a Gift Card to Encourage a Special Needs Family

This can be for gas, a favorite restaurant, or retail store. Gas gift cards are great for families who have to drive a long way to doctor’s appointments or have frequent doctor visits.

Give a give card to one of their favorite restaurants. Every once in a while it’s nice to have the option to go out to eat as a family and not have to worry about the bill.

Restaurant gift cards are ideal for families that have a special needs child because they don’t always have extra money for such occasions. Most of the time that money is being used for doctor bills, therapies, special equipment, or medical supplies.

I think anyone would agree that Walmart or Target gift cards are always acceptable! Even something as small as a $5 gift card just shows you are thinking of that family and that you care.

It doesn’t take much to make others feel loved and you’ll be blessed by being a blessing to others.

3. Make a Meal for a Special Needs Family

I will be the first to admit that cooking for others stresses me out! This would not be the first thing I would pick from this list to do to offer support. But I know there are lots of other men and women out there that love to be in the kitchen. Why not spread that love to another home with a home-cooked meal? Or even a freshly baked dessert?

If you too are not one for making meals for others, another option could be to deliver carryout food. KFC or Popeye’s anyone? Or pick up a delicious baked good from the bakery at the grocery store and leave it on the front porch with a little “thinking of you” note for a special needs family.

Giving that special needs family a night of not having to cook or giving them a special little treat can be the pick me up that they are needing for that week.

4. Invite Them Over for Dinner and Fellowship

One thing that special needs families miss out on the most is fellowship.

Whether it’s due to the child’s needs or the parents’ lack of time (or energy if we’re being honest), getting together with friends and other like-minded adults is low on the list of things to do to maintain sanity and self-care.

Invite a special needs family over for dinner and just enjoy each others’ company. Don’t stress over what the meal will be. Order pizza or grill hamburgers and hot dogs and have a picnic outside.

Just the act of inviting a family over for a simple meal and some fellowship time will mean the world to them.

5. Offer to Babysit for a Date Night

Even lower on that list of things to do to maintain sanity and self-care is a date night for the couple of a special needs child. Especially if that child has certain medical needs that most people don’t know how to care for.

It never hurts to offer to babysit even if it’s just for an hour. If the child with special needs requires extra attention, don’t let that discourage you from offering even a small amount of time to give the parents a much needed break.

This will give them the quality time they need to build their marriage that will help them through the hard days of parenting.

6. Pray for Special Needs Families

The most important act of kindness that you can show to a family with a special needs child is prayer.

Pray for the family to stay together, and pray for everyone’s health and well being.

Pray for the special needs child to remain healthy, to reach his milestones, and to continue to improve in ways that are unexplainable.

Pray for the siblings to be loving care-takers and to be children that will honor God in all things.

Here is a list of 30 prayers for special needs parents who are looking to pray scripture over their problems.

What’s Your Preferred Choice to Encourage a Special Needs Family?

These are all great ways to support any family that may be going through difficult times, not just a special needs family. It just goes to show it doesn’t take a lot of money or time to help our friends and family. Anything done in love will bring encouragement to those you share your acts of kindness with.

Let me know in the comments what’s your preferred way of showing encouragement to others! If it’s not on this list, I’m sure it needs to be so share it with us. You can also reach out to me here if you’d prefer to have a private conversation.

Be blessed and be a blessing to others!

The post 6 Easy Ways to Encourage A Special Needs Family appeared first on Breaking the Confines.

These truths were not found in a pamphlet in a doctor’s office or explained to me in preparation of being a special needs mom. Instead they were learned the hard, heart-wrenching way.

Maybe your ugly truths are similar to the ones discussed here. Maybe there are some that you’ve experienced that are not covered. If so, please comment below and let me and the other readers know so we can all share together.

We need each other to be successful at this parenting thing, and we gain strength when we know others have been through the same struggles that we are going through. Strength in numbers, right Mommas?!

Grieving Comes in Waves (again and again)

When you first receive the diagnosis that your child will have special needs, going through the grieving process is critical for your mental well-being. But don’t think it’s a once and done deal. It sneaks up on you at the most surprising times and you will grieve once more for your child.

It may be at the park when there are other kids around and you realize your child can’t move and climb like the others. Or you see another child with the same diagnosis and his progress is so much more advanced than your child’s development.

It could be during an IEP evaluation and there it is in black and white what someone else is saying about your child. They see your child’s weaknesses and remind you once again that your child is below the normal range in one area or another. You read it and weep.

You weep because this is not the life you wanted for your child. You weep because you can’t change the hard facts about the life your child will face and faces every day. But in your grieving also know that your child was made for a purpose and for a higher calling. “Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.” Proverbs 19: 21

Learning to Accept Your Child’s Delays

It’s never easy to see your child struggle even when it’s your “healthy” child. But a hard lesson for special needs parents is learning to accept your child just as he is; delays, weaknesses, and all.

It hard to not be jealous when you see other kiddos with the same diagnosis doing so much better than your child. It’s hard not to feel a little anger rise up in your momma bear heart and want to fight for the injustice. “Why is it that she doesn’t have to have therapy twice a week? And look at that, she’s not wearing leg or foot braces!”

Just remember you are normal to feel these jealous and angry feelings.

Give yourself grace and remember it’s all in God’s time. Remember He has already done so much for your child. Just look at how far she has come and know that this season you are in will not last forever.

Eventually your child will meet her next milestone and there will be great rejoicing!

There Will Be Lots of Low Lows and High Highs

Over the past three and a half years (counting pregnancy) there have been really low lows and really high highs. It’s a roller coaster ride of emotions over and over again. Most of the time it’s all in the same day!

The really low lows have been filled with anger, anxiety, and deep sadness for what my child has endured and has yet to endure. He’s still young enough that he doesn’t really understand how his disability sets him apart from his peers but it rips my heart in two knowing that some day he will see that difference.

It’s an overwhelming sadness when we as mothers see other children at the same age capable of doing so much more. We want to give our children the opportunities to try new things for their age like soccer, t-ball, dance or swim lessons, but most of these programs do not offer the extra assistance that our kiddos will need. Or there’s not a special needs group in the area that we live in making it seem like the option for sports is out of the question.

And then there are the really high highs. Those joyous moments when a milestone has FINALLY been reached! Or you get good news from one of the many doctors that since your child is doing so well, the check-up visits will be much farther apart from now on.

It’s in those really high times we learn to celebrate big the small things, because they are big things for our children. We know what a long road it’s been to reach those milestones. We see how hard our children work to do those normal things that most of us take for granted when we are doing them ourselves.

The high highs are the times we like to share on Facebook and Instagram how proud we are of our special needs child. And it’s encouraging and uplifting to see our friends and family celebrating with us. As a special needs parent, you need all the encouragement you can get, so share away friends!

You Will Have Feelings of Isolation

The other thing most special needs moms experience is the feeling of isolation. People just don’t know what they don’t know. And having a child with special needs puts you in a whole other world.

A world filled with endless medical bills that most people have no clue about, endless therapy appointments, doctors’ appointments, and tests.

We worry and pray there are no set backs, no regression, no surgeries. It’s a world where vacations are few and far between because so is the extra money.

We feel isolated from others because no one in our close circle checks in on how we are holding up.

There’s not a lot of date nights because that requires a sitter which requires money. And said sitter needs to be aware of our child’s limitations, food allergies, and other things to look out for.

A girl’s night out happens even less often than the date nights because honestly we are too tired to even want to go out.

Self-Preservation Comes in Many Ways

It may sound silly at first because according to the dictionary self-preservation is the protection of oneself from harm or death. But once you assume the role of a special needs mom, it’s a basic instinct to protect our sanity and our heart.

It looks different for each person, but do any of these sound familiar to you?

• Self-preservation is keeping your head down, focusing on your own little world, and trying not to be envious of other’s ability to do things, go places, and have opportunities (like a beach vacation!).
• Self-preservation is not getting offended when no one calls or texts to tell you they miss your friendship, or that they are thinking of you.
• Self-preservation is to keep trying to be a better mom and wife today and the next day because these people are your LIFE and you would die without them.
• Self-preservation is spending time together as a family, forgiving each other (most times daily), and loving each other more than we love ourselves.

You may find yourself shying away from others. And if you do, don’t feel guilty for doing what you need to do to preserve your sanity. But do make sure you have at least one person to talk to whether that’s your spouse, a best friend, or even the people in a supportive Facebook group.

You Will Have to Depend on Others

What I was not expecting when I became a special needs mom is having to depend on others for help.

My husband and I like to keep to ourselves and we don’t like to be a bother to anyone. But being the parent of a special needs child means you can’t do it alone.

While the husband is working to pay for our livelihood, someone else has to help with child care for the older sibling while I’m two hours away at doctors’ appointments.  And someone else has to help me by going to those doctors’ appointments because I’m not driving two hours with a small child and no backup!

It’s never been easy to ask for help and it’s even more frustrating when you don’t have many people willing to lend a hand. The hard lesson here (and ugly truth) is that most people don’t really want to help. So make sure you know who you can depend on because you will need outside support. 

Ways to Overcome These Ugly Truths

Count Your Blessings

Have you heard the song, “Count your blessings, name them one by one. Count your blessings, see what God has done..”

The best way to kick negative emotions/thoughts to the curb is to be grateful for what you already have. When you feel yourself going down the rabbit hole of negative self-talk, stop and think of five things to be thankful for right then.

To help with this, I’ve created a free printable that you can use to list those five things for each day of the week. Try it and see how much more positive your days and weeks will be!

Find a Facebook Support Group Specific to Your Child’s Special Needs

It’s important to connect with others who have already gone down the road you are on, so don’t be afraid to reach out for a helping hand.

I’m sure you will not find a more supportive group than the ones filled with parents that understand your pain, have been where you are, and can help with the needs of your child. There is strength in numbers and it’s what your momma heart needs to find comfort and solace knowing you are not alone!

Check on Other Special Needs Moms

I know how easy it is to get caught up in our own lives and forget to check on other people. I mean it’s not like we have tons of free time!

But sadly, there are more special needs moms out there today than there were 10-20 years ago. So it’s likely that you know personally one or two of them.

Don’t wait for them to check on you. Make it a point to check on them every few months. Put it in your calendar on your phone if you have to, because they need you too!

Share Your Knowledge with Others

Just as you were encouraged by others and their experiences, you can encourage other parents too. Maybe that means starting your own blog, or making others more aware during the awareness month for the condition your child has. Here are some ways you can bring awareness if you are needing some ideas to get started.

MAKE Time for Self Care

I know you’ve heard it a million times but I want to tell it to you again, Momma. Make time for yourself!

As parents of a special needs child you don’t have spare time lying around just waiting to be used and no one’s going to find that time for you, so be intentional and make time for YOU! It’s not being selfish.

When we are feeling more like ourselves and not the tired, cranky version, we are better capable of handling the stresses of the day and can take on our little world one small human at a time.

Need some ideas of self-care that can be done even if your short on time? Here are just a few ideas:

  Take a nap! (What?! I know, right!)

Sit outside with your favorite cup of tea/coffee/wine AND DO NOTHING!

Do some Yoga with Adriene (she is the best!)

Chat with a friend on the phone. Even better if you can make it a weekly habit!

Meditate, pray, practice deep breathing

Journal or write down your blessings for the day (practice the attitude of gratitude)

Check out this post that gives you 61 self-care ideas for moms without having to leave your home!

There’s even a free printable with the list of ideas and affirmations are included. Check out the link above!

I Want to Hear from You!

What ugly truths have you discovered in becoming a special needs mom? Please share with us because I’m sure we’ve all felt the same.

What are your favorite ways to overcome the stresses of being a special needs mom? I would love to hear them.

Comment below or send me a personal message!

The post Ugly Truths from a Special Needs Mom appeared first on Breaking the Confines.

The option to have prenatal surgery is between 19 and 26 weeks gestation. You and your baby have to meet certain conditions and testing has to be done to make sure that both of you are the right fit for this kind of surgery. 

The Benefits of Prenatal Surgery

Let me share with you the information that we received about the fetal surgery. Once it was confirmed our baby did have spina bifida, we had two very L-O-N-G and intense days at the hospital meeting various doctors, nurses, and social workers. 

The first day was a series of tests. They did a fetal MRI, fetal echocardiogram, and an ultrasound. The MRI and ultrasound were to confirm the baby did have spina bifida and to determine where along the spine they thought the defect (or opening) was located. They predicted his defect was from L1 to S1, which is the lower part of the spine affecting his legs and feet movement, and bladder and bowels. The fetal echocardiogram was to make sure his heart was healthy enough to withstand surgery and did not have any defects. 

The second day we meet with various doctors and were given the pros and cons of the surgery. We were told it appeared the baby and I were good candidates for the surgery. If we wanted to proceed, an amniocentesis would need to be done. I believe that was to rule out any chromosomal defects.

According to the MOMS (Management of Myelomeningocele Study) Trial, this prenatal surgery would improve his chances of not having to need a shunt, “corrects” the hindbrain herniation (also known as Chiari II Malformation), and increases his chance of walking without crutches or other equipment at 30 months.* 

Doctors think that once the prenatal repair is done and the leakage of the cerebrospinal fluid (CSF) is stopped, it causes the brain to shift upwards to the correct position in the skull. This allows the CSF to flow freely and prevents the need for a shunt. The surgery also protects the spine and exposed nerves from any further damage while in the womb, giving him a better chance at walking. 

Postnatal surgery on the other hand does not correct the Chiari malformation which means there is a higher chance of needing a shunt. Also, any damage to the nerves while in the womb is permanent.

These were the possible benefits of having the surgery as long as the baby was able to stay in the womb long enough to mature to full term or make it to around 32 weeks.  According to the doctors, if the baby was born before 32 weeks, it did not give the surgery enough time to help the brain to rise back into the skull to improve the flow of CSF.

The Downside to Prenatal Surgery

There are several pretty heavy risks involved that you have to consider. 

First, the mother has to stay in the hospital for about five days after the surgery. Then she has to stay close to the hospital for about two weeks and have someone with her 24 hours a day. If she has no complications after three weeks, then she is able to return home until it is time to deliver. The delivery would have to be by cesarean birth as would any future deliveries due to the scar caused by the surgery on the uterus. 

In our situation, we lived an hour and a half away from the hospital with no family close by the hospital that could be there for me while I recovered from surgery. My husband still had to work so he couldn’t stay with me. 

Other factors we had to consider is that I did not have enough leave to do the surgery and have maternity leave. We also had a five year old that still needed her mommy and daddy to be present in her life. 

Another downside to the prenatal surgery is the possibility of an early delivery which would mean an even longer hospital stay which could be weeks or months depending on what complications the baby was having. Whereas, if the surgery was done postnatal, the baby would typically be in the hospital for two weeks to give the back time to heal while the baby was on his belly the whole time. 

One of the factors doctors consider when determining if the baby is a good fit for this surgery is the size of the ventricles in the brain. If the ventricles are already of a certain size, then that is an indicator that the baby will for sure need a shunt at birth. 

The ventricles in our son’s brain were already of significant size so there was already a big possibility that this surgery would not prevent a shunt. 

The most alarming consequence of the prenatal surgery was the possibility of an early delivery. We were told that the uterus is very tricky and a lot of times the water ends up breaking very easily causing a very early delivery. We were warned that if he was born before 30 weeks it was a lot higher of a chance that he might not survive. 

Ultimately, we were not willing to chance his life just so that he “might” not have to have a shunt. We decided we would rather have our son with his handicaps than to risk his life. 

I knew my body and my mother’s intuition was telling me my body could not take this type of surgery. My firstborn had to be delivered early and was a NICU baby. The year before this pregnancy we suffered a miscarriage. It seemed very risky to go into this type of surgery. 

This decision was one of the scariest and toughest decisions my husband and I have ever had to make. It felt as though we were determining not only the fate of our child’s future but his unborn life as well. We were not willing to take the chance that he might not survive because of this surgery so we prepared ourselves that he would have the surgery soon after he was born. 

The Final Decision for Prenatal Surgery is in Your Hands

Please don’t feel persuaded into thinking that prenatal surgery is the better option because it is not. There is a lot of pressure in making this kind of decision but just know that whichever way you decide, your decision is the right decision for you and your family. No one can tell you which way is the best nor should they try to tell you which is the better option. You are not limiting your child should you choose to not have the surgery. 

No one could have predicted my son’s outcome. Even though we were presented with this opportunity, we quickly were at peace with our decision. Four months later our son was born by a scheduled c-section at 38 weeks. He was born at one hospital and the transport team from the children’s hospital was there waiting to take him where he would have the surgery to repair his back. 

We were initially told the surgery would be done within 24 hours of birth, but this kid came out of the womb with skin covering his lesion. He was our miracle baby! So, instead of surgery, they decided to monitor his back for any signs of CSF leakage. Nine days later we were headed home! 

He did eventually have his back surgery but the doctors wanted to wait until he was a little older and stronger. They repaired his back at seven months old, six days before Christmas. And we were home before Christmas!   

He did have to have a shunt at almost five months old, but he has made leaps and bounds developmentally in all areas since then. He does wear orthotic braces for his feet and ankles, and he’s so close to walking on his own without any assistive devices.

So just remember that even the doctors don’t have it all figured out. Trust your instincts, Momma. God gave them to you for good reason! 

What are your thoughts about the prenatal surgery? Were you told anything different from what we experienced? Leave a comment below and let me know!

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*The MOMS trial is reported in the New England Journal of Medicine, March 17, 2011. The article is “A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele.” 

The post Why We Chose Not to Have Prenatal Surgery (And How It Turned Out) appeared first on Breaking the Confines.

I so badly wanted to be a part of the Huxtable family as a child. Do you remember “The Cosby Show?” Dad was a doctor and mom was a lawyer. They always had the best ways of teaching life lessons to their kids. They were always making each other laugh and spending quality time together.

I was convinced they were a real family and even after I knew the truth I continued to believe they were real. I wanted to wholeheartedly believe that a family like that existed. And I wanted to be that family someday.

As children and teenagers full of hope and big ideas, we dream of what our own families will be like. We dream of what our occupation will be, who we will marry, and how many kids we will have. We even think about what kinds of pets we will have and how many.

What we usually don’t dream about is having a child with spina bifida (or any kind of disability for that matter). We don’t dream about raising a child that will never be like his siblings. We don’t plan for the difficulties that lie ahead for our little one and for our family as a whole.

And once we get the diagnosis that our child will never be “normal,” we don’t dwell on the blessings of having a child with spina bifida. At least not at first.

Give Yourself Permission to Grieve

We are told that when we lose a loved one to death the path to healing is by going through a grieving process. In the same way, as new parents to a disabled child, there is a path to the new way of life for your family. It is a way of recognizing that your life and your family’s life will have a new normal.

1. There Must Be A Mistake (Denial)

You have just received news that this precious baby will face many difficult and heart-breaking challenges in life. And it’s not fair.  “Why did this happen? Could there be a mistake in the test? What could I have done to prevent this?”

I remember the day we were told our son appeared to have spina bifida and that we needed to be referred to a different hospital for another opinion. We were already on pins and needles the day of the appointment. My OB had personally called me a couple of weeks beforehand to give me the blood test results for a protein produced by the baby. Abnormally high levels indicate spina bifida. I remember her telling me the range that it should be in and although the levels were considered high, it was at the lower end of the high range. So, it was a good possibility the test was not accurate.

Although we knew there could be this potentially bad news, we wanted big sis to meet her baby brother. She had waited a long time to be a big sister. And maybe in the back of my mind I thought if she was there, it would bring us good news. The ultrasound took f-o-r-e-v-e-r. Then the high-risk doctor told us that it appeared our baby did have spina bifida. He had the lemon-shaped head and a tiny sac on his lower lumbar.

We sat there in shock and disbelief of this realization. At that point, it felt like we were in a bad dream and nothing seemed real. Before being referred to a more qualified hospital, we were asked if we wanted to terminate the pregnancy. I was taken aback by this question. I’m sure it’s just protocol but the OB clinic was housed in a Catholic hospital. How ironic that it’s protocol for abortion to be considered right away after being given devastating news inside a religiously run hospital. I mean we hadn’t even had time to process this information and here we were being asked if we wanted to terminate this precious life.

As I look at my son now and think back on that day, I cannot imagine giving up all hope for him just because he’s physically a little different. To see how he has beat so many odds already is amazing. He continues to astound me every day.

2. My Baby Doesn’t Deserve This (Anger)

It’s a guarantee you will feel quite enraged about this new reality. The unfairness of it all. Why is this happening to your family? Hasn’t there been enough chaos and torment already? First a miscarriage, then your father gets diagnosed with brain cancer. And now this. All within one year. Enough is enough.

A lot of things are unknown during a pregnancy with a spina bifida child. And the doctors can’t predict the future for your child nor should they want to. In the meantime, you have to mentally prepare for a lot of scary things that could happen. Will the baby have any feeling in his legs and feet? Will he have to be catheterized? Will he need a trach or a shunt?

It’s scary to think about the future and normal to feel anger and disappointment that this is affecting your baby.

3. If Only I Had … (Bargaining)

This is where guilt can set in but you have to remember it’s not your fault. You did not willingly cause this to happen. You will have a million “what if’s” and you will blame yourself every time. Don’t allow yourself to stay in this place for long. It’s not healthy for you or your baby.

The best thing you can do besides lots of prayer is have positive thoughts. Say these things out loud and speak them to your child. I used to stand in the shower and rub my belly as I spoke positive words about my son. I know it sounds a little cuckoo and it will feel very uncomfortable at first. But it’s allowing yourself to realize you are not to blame. You are speaking into existence a positive future for your child.

4. What Good Can Come From This (Depression)

You notice other kids riding their bikes and running. And you realize your child may be paralyzed from the waist down. Your baby may never be able to run or ride a bike. At least not like normal kids. The truth hits you hard. Almost knocks the wind out of you and leaves you with tear-filled eyes as you drive down your neighborhood street on a beautiful sunny day.

“This is not fair! Life is so cruel.” With this darkness looming over you, how can you find the good in this situation? It may seem like this dark cloud will last forever as your child will continually face new challenges, surgeries, and countless doctor’s appointments, but I promise the dark cloud will dissipate.

5. This Baby is Perfect (Acceptance)

One thing is for certain. You will love this baby unconditionally and you will realize what a miracle she actually is. She will remind you of this every day as she strives to meet her milestones. You will eventually find peace and acceptance with the fact your child is especially unique. And you will rejoice with even greater joy at the smallest of accomplishments. That milestone of rolling over? It might take six months but boy when it happens, sheer joy!

Your New Normal, Your New Family

Once you have come through to the other side of the grieving process, you start to find the new normal for your life and your family’s way of living. Eventually, you start to see the beauty this new way of life holds. And my how beautiful the view is.

I leave you with an essay so lovingly written by Emily Perl Kingsley. It is called “Welcome to Holland.”

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

One Last Thing

I would like to say along with all the other moms and dads of special needs kids, “Welcome to the family!” You are now a part of a special community that understands your pain, your grief, and your joys that families without special needs kiddos do not understand.

To learn more about spina bifida check out Spina Bifida Association’s website for a ton of resources and information.

What have you learned so far from your journey?

The post How to Deal with the Diagnosis of Having a Child with Spina Bifida appeared first on Breaking the Confines.