I just want to know WHY ....

Today at 10:48AM my phone rang.  It was the genetics counselor from Boston Children's Hospital with the last of Elizabeth's test results.  I had spent the last two months holding my breath, waiting for this call.  I stared at the phone for several rings, recognizing the number, unable to move, before I finally answered it.  The last of my daughter's genetic testing had come back with normal results.  I should have been ecstatic.  I should have been jumping up and down.  I should have been relieved.  But instead I felt lost somehow.  I felt like we were back at square one.

So what was square one?  At 27 weeks pregnant I was admitted to our local children's hospital in pre-term labor with excess amniotic fluid and placental abruption.  On the ultrasound they were able to see Elizabeth having a "double-bubble" (an intestinal obstruction) and an Atrial Septal Defect, or ASD (hole in her heart).  I was terrified.  They told us she had Down Syndrome, and we got our first diagnosis.  The results of the amniocentesis would be prove that she did not have it, however, as would the blood they took from her once she was born.

Elizabeth had major corrective surgery on her duodenum at 12 days old, weighing just about 2lbs.  She spent 3 1/2 months in the NICU and came home on oxygen.  She has severe GI issues from the time food enters her body to the time it leaves.  Feeding and oral aversion have been an issue since day one, and we still work with a speech/feeding therapist 3 times a week.  We don't use her G-tube as much as we used to, but she still needs it.  She also receives occupational therapy for sensory issues and is phasing out of receiving physical therapy.  Elizabeth's lungs have long term issues from being born so soon, and she has fairly severe allergies as well.  The hole in her heart has almost completely closed on its own, we got very lucky there.  We currently see a special pediatrician from our local children's hospital as well as a pulmonoligist, cardiologist, geneticist, gastroenterologist, surgeon, developmental pediatrician, and early intervention for her therapy services.

There are times that I feel as though my daughter's entire lifespan has been a search for something to explain this journey - something to explain my pre-term labor, her prematurity, her intestinal obstruction, her GI issues, her eating difficulties.  I feel like I need a reason why. I have to know why. Why were we selected for this journey?  Why us?  We aren't anyone special.  I want to know why we were chosen to have her, why she was meant for us.  I want to know why things went wrong.  I want a diagnosis, I want a name, I want a label.  So often we hate labels and they are a terrible vice, yet that is all I have been grasping for.  I want a diagnosis so I know what the future holds, so I know how to prepare better to help my daughter.  I want to know if this would happen again, should we decide to have a second child.

I have a special needs daughter, but I don't know how to explain what's wrong with her, because I don't know myself.  There is no name for what she has.  We have lots of individual diagnosis, but she doesn't have an all-encompassing diagnosis that would explain everything.  People ask me why she was premature, why she has a feeding tube, why she won't eat like "normal" kids, why she has sensory problems.  There is no quick, easy answer.  They ask when she is going to be better.  I don't know what to say.  Better than what?  Compared to a year or two ago, she's doing phenomenal, she's making leaps and bounds.  I don't know how to explain things about my daughter that no one will ever understand.  And it's difficult to explain something to someone when you're still searching for the answer yourself.

The Down Syndrome diagnosis during pregnancy (while wrong) started us on a road of genetic discovery that I desperately hoped would lead to an answer.  In the process we learned that she has 42 genes on her 4th chromosome that are identical - so for those 42 genes, she got both sets from the same parent.  We don't know which parent.  And unfortunately, no one could tell us what that meant.  Those genes aren't associated with any known conditions or diagnoses that correlate to her birth defects.  Our local children's hospital, while wonderful in many areas, is lacking in experienced genetic specialists.  They tested for 22Q and a few other things.  Everything came back negative.  I was searching, searching, searching for answers. 

Elizabeth's speech therapist suggested Boston Children's Hospital, so I asked her pediatrician if we could go for a second opinion.  In doing so we met wonderful clinicians and doctors - brilliant, caring people who spent more than 3 hours with us, late on a Friday afternoon into the evening.  They explained what they think happened with Elizabeth's GI system during embryo/fetal development, and that they didn't think it was related to her chromosomal anomalies.  They saw her heart as unrelated to both the GI and chromosomal issues.  Still, they saw some things they wanted to test for, so we had blood drawn and sent out.  FragileX came back negative a few weeks ago, and today TBX1 came back negative as well.  Boston offered to send us to a privately funded organization for whole exome sequencing, but only 30% of the people that go get an answer. But at what point do we stop searching for an answer we may never get?

While I am happy that the last test result came back negative, I also feel frustrated and lost.  Part of me wanted one of these tests to be positive, if for no other reason than I need an answer.  I need a condition, a name.  I feel like Boston was our last chance for a concrete cause, or reason, or diagnosis.  At this point I don't think we're ever going to get that.  I don't think I'M going to get that.

And perhaps that's what this is.  Perhaps this search hasn't been so much to find a diagnosis for my daughter, but to find an answer and closure for myself.  As her mother, and my body her first home, I want to know that I didn't cause this somehow.  I want to know that I didn't do something wrong.  I want to know that her health issues aren't my fault.  Sometimes I think that's what a lot of us are searching for - peace of mind that nothing could have been done differently, that it wasn't our fault.  Peace to know that the guilt we hold so dear, so deep is not warranted.

It's strange, because it's not as though an answer would change or fix anything.  She would still have the same medical issues and challenges.  The outcome wouldn't be any different.  We would just know why it happened.  So why is an answer so important to me?   I'm not sure.  Would it make me a better mom?  I don't think so.  It is hard for me to accept that "these things just happen", or that this was part of my life's path, or everything happens for a reason, or that this was meant to be.  I am a very logical, calculating, type-A person.  I want to know why. I need to know why. And the harsh reality is that I will probably never know why. After years of searching, we have pretty much exhausted our options.



And maybe that's why the phone call this morning was so disappointing - because this was our last real hope for the answer so that I so desperately seek.  At this point there are no more specialists, no more tests.  There is only acceptance of the unknown.  We join the ranks of the undiagnosed.  We just have to accept that we defy the odds, that she is the 1% (actually she is 1 in 12,000 for duodenal stenosis caused by an annular pancreas - add in the other birth defects and chromosomal anomalies, and she is 1 in ..... some very big number).  We have to accept that things happen and not every pregnancy goes as planned.  Or rather, I have to accept that.  I know that there is a reason why she was born the way she was.  Maybe someday I'll find it out.  Until then, I just have to look at her beautiful smile, try to have faith in something greater than myself, and believe that things happened just the way they were supposed to .... even if I don't know why.

MOM Note:
At a recent conference MOM was able to speak with a few of the different agencies that offer Whole Exome Sequencing (as well as many other genetic panels). We talked with a rep from Transgenomic that told us that they know that the high costs of these test often take them off of the table as options for many families. Transgenomic will perform most test (with a script from your doctor) for $50 or less. This $50 may include testing parents and immediate family members as well- and they can come to you. According to their website and marketing material, 85% of the US patients are eligible for testing at this price. If you are looking at having genetic tests done for your child, and are worried about the cost, you may want to give them a call.

Meeting with a legislator

A few weeks ago, I wrote to our United States Congresswoman, Cathy Kastor, who represents the Tampa, St. Petersburg, Fl area. I have met with other legislators through the years but, this was the first time with a national representative. I saw,in her bio, that she was very interested in diversity issues. I thought this might be a way for her office to meet with me, after all, a disability is a diversity, isn't it? So I contacted her office through e-mail. About a week or so after my e-mail, I received a call from The Congresswoman's Outreach Coordinator in the Tampa office. We set an appointment for this past Monday, which was only 3 days away from the phone call!

The time I needed to think about and organize what I would say came over a particularly busy weekend. On Sunday afternoon, I began to panic just a bit. I felt totally unprepared for what I hoped would be an important positive meeting. I "locked" myself in front of the computer and tried to write down the issues I wanted to speak about. Would you believe, WRITER'S BLOCK! I guess more than that I just couldn't chose the topics that were most important. Having had experiences with legislators before, I knew that my time was limited, 15 maybe 20 minutes at most. What are the most important issues to discuss?

I finally came up with a plan. I prioritized my presentation by what I saw around me including some of the issues from my own experiences and others I have read about on Facebook. Like those on Mommies of Miracles, Cerebral Palsy Awareness, AutismTalk and many other pages and sites. I finally came up with my topics: ADA accessibility, equipment needs, best educational possibilities, continued Health and Wellness after aging out of school (over 21). I began to work finding statistics, related stories and other information. I thought that would round out the 15 or so minutes I would be there.

On Monday, I arrived to a very friendly welcome where coffee was offered and was ushered into a very impressive and comfortable office with a small table and leather chairs. It was much more intimate and less intimidating than a big conference table. After a few minutes a young business looking woman came in to the room. She had a friendly smile and an outstretched hand and she introduced herself as a Staff Assistant. She apologized for the fact that the gentleman I was originally supposed to meet had to pick up the Congresswoman from an event. We began to discuss my list and I could see that 15 or 20 minutes was not happening. She was just listening to me, discussing whatever I brought up and writing down all the questions I had, as well as the thoughts and information I was able to give her. Shortly we were joined by the person who had originally scheduled the meeting. Together, we spoke for almost 2 hours! It was a good exchange of information I found out about some places I could contact that were doing some pilot work on the issues. They asked questions and offered their thoughts. I really felt comfortable that they were listening! They explained the procedure as "What was gong to happen next". The two of them and some other office assistants, specializing in the issues I brought up, would have a meeting and put together a report that would then be sent to me for approval and then given to the Congresswoman. I was told that we would meet again with the effort being placed on how to make an impact in some of the areas we had discussed.

I did walk out with a good feeling. Visiting legislators is not always as easy as this was, but I am hopeful that this will help to bring to light issues that face the needs of our children and families.

Meeting with those that have the ability to write legislation and offer relief for those in need is an important part of not only advocating for your child but for others as well. Please take the time to find out who your state and federal officials are and write to them and express your needs and those of others you know in the community. There are over 54 million Americans who are disabled. 1 in 4 who will be disabled at sometime in their life. These numbers do not include family members and caregivers who together can be a driving force for change, growth and inclusion. We are an incredible collection of people who can have a great but fair influence by expressing our needs and desires to those elected officials who can understand the reasons to want to help. Let them know you are out there and a show of their concern and support will make a difference in who we rally behind.

This was not a place for pictures, so I am posting an image of my daughter Laura-Lee who is Ms. Wheelchair Florida USA which is a service title helping her to advocate in many different ways, and the governor of Florida, Rick Scott at a news conference in Orlando, Fl.

Searching for a Diagnosis - Hints and Tips

Some children with special needs may receive a diagnosis very early in life. Either in-utero, or at birth. If a child has obvious physical or medical issues such as a heart defect, a cleft palate, or respiratory issues, then a thorough medical “work-up” is generally undertaken. Some of these children may go home from hospital with a diagnosis in place.

For others, the road to a diagnosis can be a long and difficult one.

“Not all genetic or developmental difficulties are obvious in-utero or at birth” says geneticist and pediatrician Dr David Coman. You might start to suspect a problem because your baby has difficulties with feeding, won't make eye contact, has difficulties with sleeping, isn’t meeting developmental milestones or perhaps has started to regress.

Some parents may quickly recognise a problem, and immediately start to seek answers. Other parents may take longer before they begin to look for answers. This can be due to a range of factors, including the severity of your child's symptoms, awareness of normal developmental milestones, and available supports. If doctors are dismissing your concerns with words like “she's just a slow developer”, “he's just a fussy baby” or 'boys can take longer than girls”, then it can be easy to brush your concerns under the carpet. After all, most of us have been brought up to believe that those in positions of authority know best. That doctors have the answers. That if there is something wrong, they will recognise it and diagnose it. Unfortunately that is not always true. As the parent of a child with special needs, you will more than likely find yourself having to push for answers, question those in authority, and ask for second, third or fourth opinions.

Familiarise yourself with normal developmental milestones. The internet can be a valuable tool for this. There are many available resources that you can access simply by searching for “developmental milestones”. The “Milestone Moments” booklet is one example of such a resource. This booklet is published by the Center for Disease Control and Prevention, and developed in conjunction with the American Academy of Pediatrics. It contains great detail, including “red flags” for developmental delay, and hints and tips on how to encourage your child's development.

While early difficulties don’t always mean your child will have ongoing problems, according to Dr Coman, “developmental delay is always a red flag that should prompt input from a medical professional. It can be ‘global’ in that it affects all aspects of the child’s development (fine motor, gross motor, social, speech and language skills), or it can be confined to specific developmental fields.”

Also, trust your intuition. If you feel that all is 'not quite right' with your child, then reach out, get the ball rolling, and start looking for answers.

Sometimes it may be difficult to reach out – you might be afraid to have your suspicions confirmed. But denial and avoidance won’t help your child. While none of us dream of having a child with special needs, having a diagnosis for your child can be useful for many reasons. It can help you to know what medical issues may need to be monitored. It may give you some understanding of the long term prognosis for your child, and specific challenges your child is likely to face. It can help you to access appropriate early intervention and supports. And it can allow you to connect with other parents who have children with the same condition, so you can share your highs and lows, exchange hints and tips, and benefit from the knowledge of families on the same journey. Don't be afraid to reach out and search for answers. If your child does indeed have special needs, there is much to be gained by knowing exactly what you are dealing with.

Finding Help

If you suspect that your child may have some genetic or developmental disorder, speak to your GP or pediatrician. Come to the appointment with a written list of your specific concerns. Request a referral to a developmental pediatrician or geneticist.

Your doctor may brush off your concerns and suggest that you return in a few months time, so they can better determine whether a referral is necessary. This may be your first taste of experiencing what it is like to have to advocate for your child. Trust your instincts. Time is precious. Early intervention is invaluable. If you believe that further investigation is required, put your foot down. Insist on a referral, and don't leave until you have one in hand.

Prepare carefully for your specialist appointments. Write a list of your specific concerns, including developmental and physical issues, as well as behavioral problems. Simple dot point lists, separated by headers, are generally easier to read than long paragraphs. It is recommended that you include the following categories:

• Details of pregnancy and birth


• Your child’s developmental milestones and when they were attained


• Any physical anomalies you have noticed


• Behavioral problems


• Feeding Issues


• Sleeping Issues


• Family history

It can also be useful to take health records and pictures of your child at varying ages to the appointment. For older children, information from the preschool or school can be extremely valuable.

Update the information on a regular basis and give a copy to every specialist that you see.

Take notice of the specialist's reaction to the information that you have prepared. Are they interested in reading it? Grateful that you have taken the time to prepare? Or do they seem annoyed by your diligence, and treat you as an over concerned parent? If you believe your doctor isn’t taking your concerns seriously, consider finding another doctor. “You shouldn’t feel afraid to voice your concerns,” Dr Coman says, “and know there are no silly questions.”

Keep records of each of your appointments, who you saw, and the reason for the appointment. The number of appointments you need to attend may grow quite quickly. It can be helpful to keep good records from the start, rather than trying to “piece it all together” later down the track. The “Appointment Log” template, developed by Mommies of Miracles, is a great tool for this purpose.

Sometimes (often!) you may find that doctors have long waiting lists. When time is ticking away, and you are desperate for answers, this can be really disheartening. Some tips that may help you to get in the door more quickly:

• Always speak kindly to the medical receptionists - they are the gateway to the doctor.


• Ask to be placed on the cancellations list. This can sometimes reduce your waiting time by months.


• Once on the cancellations list, ring back every few weeks and politely enquire as to whether there have been any cancellations.


• Ask for email or postal details. Send in your dot point list outlining your child's issues. Include a cover letter stating how concerned you are about your child, the impact that not having a diagnosis is having on your family, and your concern that your child is not receiving appropriate early intervention. In one instance, we were told we could expect to wait between 12 and 18 months to be seen by a specialist Child Development Clinic. After I sent my pleading (yet polite) email, including the long list of Sophie's issues, we were given an appointment within two weeks!

If you aren’t getting answers, don’t give up. It took several general practitioners, two pediatricians, a developmental pediatrician, a speech therapist, occupational therapist, physiotherapist, audiologist, ophthalmologist, pediatric dentist, two hospital admissions, a visit to the ER, countless hours of internet research and three geneticists for us to finally obtain Sophie's Kabuki diagnosis when she was 20 months old. It took another year before we obtained her Asperger's diagnosis. During the course of that time I was accused of many things, including being a neurotic first time mother, being over-concerned due to having post natal depression, and, believe it or not, “delusional” because I thought that my child had a genetic disorder. I started to question myself. If all these doctors thought Sophie was fine, perhaps I really WAS crazy! But I knew in my mother's heart that something was wrong. So we kept looking until we found doctors who were prepared to listen and take us seriously. For us, persistence was key.

Research on the internet, talk to other parents, keep looking for answers. By the time we received Sophie's diagnosis I was an expert at “Dr Googling”. Some doctors were frustrated by my insistence on trying to find answers on the internet. But researching can help you to become familiar with medical terminology, to rule out some syndromes, and to find ways in which you can help your child's development without having a diagnosis. We found doctors who were happy to listen to the information we had discovered. And ultimately, those were the doctors who put us on the road to a diagnosis.

If you do receive a diagnosis, you may find yourself experiencing mixed emotions. Even though I had fought so hard to find answers, I shed some tears when we received Sophie’s official diagnosis. It was undeniable now. This was not something that was ever going to go away. The diagnosis was a mixed blessing. It destroyed that final bit of hope that perhaps I was overreacting and everything would be okay, but there was definite relief. I could finally stop searching for answers. And receiving a diagnosis restored my faith in my “mother’s instincts”.

Remember - a diagnosis doesn't change who your child is. He or she is still the same child, with the same likes, dislikes, strengths, weaknesses and cute quirks they have always had. The things you love about your child remain, regardless of what their diagnosis may be. A diagnosis does not change your child – it gives you the ability to educate yourself about your child’s condition, and to take appropriate steps to help them reach their full potential.

Before finishing up this post, I'd like to reach out to those parents who may have been searching and searching, and still haven’t been able to obtain a diagnosis for their child. Unfortunately, some children will remain “medical mysteries', despite all your best efforts at finding answers, and even with the best doctors on board. While I can't imagine how difficult this must be, never forget that there is plenty that can be done to help your child even without a diagnosis. Prior to Sophie's diagnosis, we simply had to work on a “treat the symptoms” basis. Physiotherapy, occupational therapy, speech therapy, horse riding therapy, behavioral therapy. All of these things and more can be done without a diagnosis. There are also support groups for parents who have a child without a diagnosis, including Syndromes Without a Name (SWAN) USA, and the Facebook forum “Syndromes Without A Name (SWAN) International”. You are not alone! The fact that you are looking for answers shows you want the best for your child. With your love and support, your child will reach their highest potential, with or without a diagnosis.

If you would like to read more about our journey to a diagnosis, I would be honored for you to follow our journey on my personal blog about Sophie.

Blessings to all.

I Hate the Term 'Special Needs'

I hate the term "special needs." I mean, hate it. Can't stand it. I don't want my son to be labeled as such, and I refuse to be called a special needs parent.

That label is reserved for sick kids-- severely sick kids. My kid isn't sick. He's not. He's... not. Right?

That was me, from the minute my son was born, and we knew he was different. My husband could see his right arm, and his smaller, out-of-proportion-from-the-rest-of-his-body, sweet hand flailing about as the nurses cleaned him up after my c-section.

He whispered, "There's something wrong with his hand," and leaned his forehead against mine as I lay on the operating table, slipping in and out of consciousness from the extra dose of anti-anxiety meds I suspect the anesthesiologist pushed through my epidural just then.

Those few days in the hospital were a daze. It didn't feel like we had just welcomed a precious new addition to our family. It felt wrong, off... like a dark cloud hovered over us in the recovery room. The nurses could feel it; they could sense the shock we were still in.

Once we took him home, though, it seemed to get better. To have him occupy the spaces we had been anticipating seeing him in for so long-- in the swing, on the changing table, in his crib with the carefully selected bedding-- it changed our perspective, slightly. The shock still hung in the air, but it was wearing off. The hand would be dealt with, but in the meantime, he was still our precious newborn, and that giddy, new parent feeling began to emerge.

Twelve days after he was born, right as he was starting to get a routine down, we noticed how fast he was breathing... nearly three times that of a normal newborn. We rushed him to the ER, and from there he was flown to a children's hospital two hours away.

It was then that they began taking inventory of all the things wrong with our baby we didn't know he had.

• One non-functioning cystic kidney.


• Two heart murmurs, one of which was quite large and disturbing.


• His small hand.


• A large inguinal hernia.


• An immature 7th nerve, resulting in paralysis of his left eye and eyebrow.


• A partially-collapsing airway.


• Aspirating his foods, which required the installment of a G-button.

All of these anomalies together, according to the geneticist, gave him a diagnosis of VACTERL Association. It is not a chromosomal or genetic abnormality, rather just a name for an observation of body system malfunctions that are often seen together. At this time in the research, it's thought to be due to environmental factors, or lack of blood flow at a certain point of development. Thankfully, thankfully, it's not often associated with any mental deficits.

It was in the middle of discussing with a nurse about us needing a medical supply company for his g-button equipment that I realized... these are special needs. This is what a special needs conversation sounds like. This is his life, and our life, now.

Special needs is not derogatory. It doesn't mean he's defective, or wrong. It doesn't mean he'll be special needs forever... or maybe it does. It just means that right now, there are some things his body can't do on its own-- like, close his left eye, or swallow formula, and he needs extra help, from doctors, nurses, specialists, and his parents.

It's not about the label. It's about getting those extra things, whatever they may be, to help your child grow and thrive.

Jackson is a special needs baby. I embrace that now, and it doesn't scare me. And, my husband and I are special needs parents. New ones, nervous ones, but also determined.

However, above that label, Jackson is our baby; he's the final piece to our family. He, along with his sister, complete our lives.

Traveling Down Life's Road

Hello all, I am one of your older bloggers, I just might be your oldest blogger on this site. So, if wisdom comes through age, then I got that goin on!!

Over 25 years ago, my husband and I became foster parents and were blessed with the ability to adopt three of the 9 kids who walked through our door. All three are girls, they each have dark hair and brown eyes and their middle names each was Ann. They all have different special needs. As the days and weeks go by, I will tell you about each of them and the different journeys each has taken. For now, I thought that I would try to give you some idea of what the beginning of this journey was like. Won't you spend a little time traveling this road with me?

My husband, Bob and I married just about 30 years ago, September 22 is our anniversary. I had one incredibly wonderful daughter from my first marriage, who has issues with dyslexia. One day, shortly after we were married, I shared my desire for more children with my Bob. I truly wanted 5 kids running around the house, but due to my issues with insulin dependent diabetes, having more children was not in the cards. Although it was many years ago, my husband's mom was part of a family of 11 girls, 2 were foster sisters and one was an adopted sister, who grew up to be a "Sister", I mean a Mother Superior. The idea of fostering and adoption was therefore, not strange or uninviting to him.

We had our interview, filled out the paperwork and began the process of becoming certified Foster Parents. Part of the process was for us to take something called, the MAP training, this is a 12 hour, in class training on parenting, in all it's forms, discipline, nutrition, sibling rivalry, behavior and more. We took the classes very seriously looking back, I am so glad we did, those classes and the mandatory 4 hours of yearly recertification was an immense help in handling many of the issues that came up as we negotiated the twist and turns of the road we travel to this day.

In September of that year, I was at work as property manager for a condo in Long Island, NY. I was sitting in my office dealing with a very quiet afternoon, when the phone rang, it was the foster care agency. let's take a minute to set the scene...the policy of the agency was that you were told there was a placement and you had to tell them right then and there if you wanted that child so, true to the directions, I was told there was a two year old girl who needed a foster home, I said YES! immediately and was told she would be on her way within the hour. I hung up, sat there stunned and began to think...leaving in an hour...how long would that be before she would get to us...we needed diapers, bottles, a car seat, would she have clothes, toys, should I get baby food for her. I was reeling. Then my husband called just to check in, I thought he knew, I believed the agency had contacted him as well, so I began babbling, "we need to get a car seat, diapers, milk", I was shaking all over. My husband finally said, "what are you talking about?" I melted at that moment and in a soft voice said, "Oh you don't know!", I told him what was happening. I was just about a big blob by then, "I thought you knew" I said with almost no strength left in my voice. Now we were two puddles, two grown adults, on a phone just sighing. The moment passed and the plans began to take shape, I would come home and he would meet me there, a car seat, yes a car seat was most important, no, diapers, no bottles or sip cups or both!

We went together to the store, running into some women who were shopping and, with their help, as well as, a number of other people who were caught up in our enthusiasm and to feeling the joy, the shopping began. Soon they were all running through the store, even calling out loudly "Marcia, do you think she will need this toy or that brand of diapers!" by the time we reached the register, there were four or five women standing there, smiling and giggling, sharing a part of our awesome experience. It was one of the most beautiful moments in my life. We packed the car with our baby treasures, hugged the ladies and said good bye to and headed home, hoping that our sweet little Nicole wasn't waiting in the driveway!
NO SUCH LUCK!

The evening progressed, we couldn't eat or watch TV or even talk to each other, we sat, then we paced, then we sat some more. Finally the phone rang, it was the people who were bringing this child to us. They were lost, adding almost an hour onto the trip. Finally, at 10 PM I saw the exhaust of a black car in front of our home. I raced to the door, Bob telling me to go ahead as he held our very gentle dog from running out into the street. I made the journey from my front door to the curb just in time to see a lady reach into the back seat, she turned around and revealed this amazing cabbage patch doll for real! The lady said "go to your mommy" and in that second she was in my arms! She was soaking wet, held on to an empty bottle and just looked at me bewildered. Her name was Nicole, now Nikki and this was the beginning of the journey of raising 3 preciously awesome girls, with needs far more than I knew or understood at that time.

All 3 of my girls have disabilities: there are learning disabilities, mental challenges, combined with autism spectrum, cerebral palsy and a thing they once call RAD Reactive Attachment Disorder, an ongoing diagnosis that changes as a person gets older, but become somewhat more complicated, there is short term auditory memory delay child hood seizures and more.

I have spent the past 25 years dedicated to their needs and the needs of other people in our community. I have run support groups, sat on boards and councils, raised funds for people and charities and more. I have experienced much about places to go for services and places NOT to go. I have talked to families facing many issues: SMA, CP, Spina Bifida, Childhood Cancer, Group Homes for adults, and so much more. Hopefully in the coming blogs, there will be some tidbit of information that I have received from my experiences and those of others who have already touch our families lives. I hope that I can continue to be an advocate for my children and others needing the help so that they can experience joy that all of us, as parents and citizens of a deeply pasionate community of people want and need to find for our children. I would like to be blessed with the ability to relate stories, thoughts and information that provide encouragment and might get someone through a dark hour. I am here to share and to learn from you all. Thank you for reading how my journey began...See you again soon!

What I want this Mother’s Day

I remember my first Mother’s Day well.  I was so excited to finally be celebrating as a new mom.  In my mind I built it up to be this glorious, amazing day.  I would sleep in late, be served breakfast in bed, and leisurely make my way to the living room.  The laundry would be done and folded, the house would be immaculate.  Grocery shopping would be done for the week.  My daughter would have just had a bath, and be clean and happy.  I'd go get a massage and have a mani/pedi.  My hair would look perfect (because I'd actually do it) and I'd look and feel great about my post-baby body.  I'd receive a beautiful card and a thoughtful gift.  Dinner would be a culinary masterpiece and a layered chocolate cake would top things off.  I'd get to bed early between nice clean sheets and have a full night's rest.



 

 

And ..... that's not quite how it went.

 

 

On my first Mother's Day, my daughter had only been home from the NICU for 5 weeks, and I wouldn't leave her side.  She was still on oxygen and an apnea monitor, and I didn't feel comfortable with anyone else watching her.  My husband and I were also the only ones who could feed her, since we had to feel whether she was still breathing, and sometimes rub her back to stimulate her.  On top of that, I had postpartum that was so awful at times that I couldn't get out of bed, much less shower and go out.  So we decided to stay in for my first Mother's Day.  I didn't sleep in.  I barely slept at all with the apnea monitor beeping all night and my daughter crying.  My husband tried so hard to make sure I had a good day, and he made a huge effort to make me an awesome dinner.  But he'd never cooked lobster before.  We learned he's not real good at it.  He also made shrimp cocktail, but the shrimp weren't thawed.  There was no cocktail sauce.  The sink was full of dirty dishes.  I never showered and my hair never got done.  My nails?  Yeah, right.  I was depressed and upset with my post-baby body.  Dirty laundry was everywhere.  The house was a mess.  My daughter de-statted the entire day and refluxed/projectile vomited more times than I could count.  I was covered in puke most of the day.  So was the house.  She screamed through every feeding (oral aversion, G-tube wasn't in the picture yet).  By the time we ate the lobster it was cold and gross.  I cried a lot and was horribly depressed.  The day was actually somewhat of a disaster.  Nothing went right.  Or rather, nothing went the way I thought it was supposed to.

 

You see, I built up this idea in my head of the perfect Mother's Day that was impossible and out of reach.  It set unrealistic expectations on me, my husband, and my daughter.  I had this picture of how it was supposed to be, and when the day didn't live up to that, it left me feeling empty and disappointed.  I was angry and frustrated.  I only got one first Mother's Day and I thought it was wrecked.  But I failed to realize that it wasn't wrecked, that was just the way I was viewing it.

 

I am blessed with an incredibly loving, understanding, and supportive husband who tried so hard to make it a memorable day, but I failed to realize that he was also navigating this scary, uncharted journey through special-needs parenthood, and he had equally difficult moments as me.  I was still on maternity leave, he was back at work.  He was also trying to take care of me with my awful post-partum days and had a lot on his plate.  Expecting all those things to be done was unrealistic and selfish on my part.  And expecting my daughter to suddenly have a great day when we knew she had lots of issues and needed extra care was equally unrealistic.  I couldn't turn my 2lb preemie into a miraculously healthy baby just so I could have a good Mother's Day.  I couldn't expect her to feed great, not need her oxygen, or not de-stat.  She was still hooked to tubes and wires, she still hated the bottle, she was still an a-typical child recovering from a very difficult, very early birth with a lot of health issues. It was wrong and unfair of me to expect anything different.

 

But I couldn't realize that right away.  For a long time I was too blind to see all the good things that happened on that Mother's Day, I was just so focused and preoccupied on everything being 'perfect.'  Looking back on that day now, we can laugh (it took a while).  It was a comedy of errors, really.  Time and perspective has helped me appreciate all the things that were GOOD that happened.  My daughter was alive.  Worth repeating: My daughter was alive.  She made it through major surgery at 10 days old.  We weren't in the NICU any longer.  My daughter was at home, and in my arms.  I had a loving, supportive husband and father to my baby.  I was surrounded by the two people I love more than anything in this world.  We had wonderful, loving family who lived close-by.  We had jobs, cars, food, and a roof over our heads.  Who cares if there wasn't a crafty card with my daughter's handprint or a gift waiting for me?  Who cares if dinner sucked, or I didn't shower or get pampered, or didn't sleep in?   Who cares if the house and I were covered in puke?  (That became a new norm for us anyways).  What mattered is that the two people in this world who made me a mom - my husband and my daughter – were by my side.  I was surrounded by them and their love on my first Mother's Day.  That's what mattered.

 

When I was admitted to the hospital at 26 weeks gestation in preterm labor, my husband had packed some of my books to keep me occupied - including "What to Expect When You're Expecting."  As I unpacked in my hospital room, I saw the book and it upset me.  I asked him to take it back home.  It didn't apply anymore.  I could no longer expect anything I read in that book, or any other book for that matter.  I no longer knew what to expect at all.  I had to take my preconceived notions and ideas of how it was supposed to be, and throw them out the window.  And that's what I've been learning to do for the last 2 1/2 years.  It's not an easy feat.  It can actually be very painful at times.

 

There's a quote that says "What screws us up most in life is the picture in our head of how it's supposed to be."  With Mother's Day, I had to take the idea in my head of how it's supposed to be - or how I thought it should be - and just throw it out the window.  Because it didn't apply anymore.  Because not everything goes how you think it's going to.  As MOMs, we all know that.  We are all on unexpected, unanticipated journeys in this life and have had to throw our ideas of how it's supposed to be away.  That's a really, really difficult thing to do at times.  It's also a very emotional thing to do, because we have to let go of the way we wanted things to be.  That can mean letting go of certain plans for ourselves, or for our children.  But I think letting go of the picture in our head of how it's supposed to be, is the only real way to see and appreciate the good things that we DO have.  I had to let go of my idea of the perfect Mother's Day in order to appreciate the good and beautiful things that did happen on that day, and to appreciate how lucky I was to have my daughter.

 

For this Mother’s Day, do I want a clean house?  Sure.  A nice dinner?  Absolutely!  Even just a card?  I’d love one.  But if I don’t get any of those things, that’s ok.   I may never get a handprint card from my daughter, because she screams when there's stuff on her hands (sensory issues).  Having a clean house with a 2 year old is IMPOSSIBLE.  And enjoying a nice meal?  She won't sit at the table for more than five minutes and she'll only eat ketchup or barbeque sauce (feeding issues), which ends up everywhere.



 

Our society has made this holiday into a day of unrealistic expectations, which only lead to disappointment.  Instead of focusing on spa appointments, cute crafts, a clean house, or a gourmet meal, I’d rather just focus on the beautiful people in my life who enabled me to celebrate this holiday – the people who made me a mom.  I don’t want to have my heart set on ridiculous expectations of what this day should hold.  I don’t want to focus on preconceived notions set by people who haven’t faced the same struggles that we have, who don't understand the issues we face.  I’d rather remember the beautiful miracle that I have in my daughter, and remember how far we’ve come.  She reminds me just how precious life is, to celebrate every milestone with joy (no matter how late), to live in the moment, and to never take anything for granted.  I feel honored this Mother’s Day to be her mom, she has taught me so much.  All I need on this holiday is to look into her eyes and see her smile.

 

Plus, who wants crappy lobster anyways?

 

 I would like to wish each and every MOM a truly wonderful and happy Mother's Day this year.  May it be filled with joy and love.

 

She Taught Me To Have Faith - In Myself

Faith. It’s one of those funny things. For each of us it means something a little different. Merriam Webster defines faith as "a strong belief or trust in someone or something; belief in the existence of God; strong religious feelings or belief, or a system of religious beliefs." Somewhere in that definition, I think we can each find our own meaning of faith.

For me, faith has less to do with God and more to do with what I can see & touch & feel. Do I have faith in God? Yes. But it’s easier for me to have faith in something that’s tangible. I was raised in a very devout, religious household. As I’ve gotten older, I’ve developed my own belief system and I find that it’s very different from my upbringing. My husband and I don’t go to church or partake in any kind of organized religion. We were married by a justice of the peace. I believe in God, but that’s about as far as it goes.

For many, many people of all different backgrounds, being a part of a community or religion is an essential part of their everyday life, it’s who they are. Belief in a God/Christ/deity/holy being/higher power and prayer to Him/Her/It is how they are able to make it through the day. For still others, God is there and church is something they go to, but perhaps it’s more on the back burner in their daily life. We are all different, unique, and beautiful in how we believe - or don’t believe - in a God.

Faith is kind of the same way. It’s different for all of us. I think we all have faith in someone, or something. Faith may typically be linked to God, or a religion, but it doesn’t have to be. For me, faith is the knowledge that I was given my daughter for a reason, that there is some kind of higher power out there that put us together. Somehow we were paired up (and perhaps God comes into the picture there, I’m not really sure) but I know it was not by chance that she came into my life. She needed me, and I needed her. She knew there were things I needed to learn about myself, and she was going to teach me.

I planned on a normal, full term pregnancy. I planned on bringing home a healthy, chubby baby after a 2 or 3 day hospital stay. I planned on everything being perfect. She had something else in mind. At 27 weeks gestation my daughter was born, weighing just over 2lbs. They weren’t sure if she was going to make it and prepared us for the worst. Somehow though, throughout the surgeries and specialists and close calls in the NICU, I never doubted that she would live. I knew my daughter was going to be ok. Her dying was never a thought that I entertained. It just never occurred to me that it was going to happen. I had faith in her.



What she has taught me over the last two years is to have faith in myself as well. She has taught me that I have more patience and strength than I ever imagined possible. I can try to soothe a screaming baby at 2am who’s hungry but refuses to eat. I can reinsert a mic-key button (by myself) that my toddler just pulled out. I can fight with doctors and insurance companies and medical supply companies to get her the necessary treatments and therapies. I can juggle working full time while keeping appointments with her litany of specialists. I can handle her meltdowns in stores and malls because she can’t process the sensory overload. She has taught me that one person can make a difference, because I make a difference to her.

My daughter has helped me find the confidence and self-assurance that I was missing. I’m a different person because of her, a better person. She has taught me to have faith in ME. She has taught me to not doubt myself, but to trust my gut instinct, and to know that everything I’m doing is for her good. She has taught me that I’m not just a mom, I’m a MOM. And she has taught me to believe in myself.

Faith is different for all of us, but I think it’s something we all need to have on this journey. I never realized how much it was lacking in my life until my daughter showed me. For me, it’s not faith in God or a religion. It’s not faith in something else. It’s faith in myself. I know I can handle whatever life throws my way. Everything happens for a reason, and I was blessed with Elizabeth to teach me these lessons and to show me who I am capable of becoming. I am forever grateful to her for that gift.