You Would Too

Do you remember that oldies song “It’s my Party”? The lyrics go, “It’s my party and I’ll cry if I want to. You would cry to if it happened to you.” I know it’s a weird connection but that’s the song I thought of as I began to write this blog last night. So many people say how I’m a great mom or how Abigail’s blessed to have me. Maybe I am. Maybe she is. There’s a ton of special needs parents and care givers that are amazing!! I’ve met only a small handful and their stories need to be heard by everyone. Special needs parents are some of the most amazing people I’ve found out. But like the song goes, if you had a special needs kid you’d be pretty amazing too.

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Just a few days after we got home from the hospital before we found out about this journey we were about to be on.

Let’s face it. If you’re a parent you are amazing. The responsibility God has given you to raise your child or children is one of the biggest under takings you’ll ever have. You are raising the future in your home right now. It’s huge!! It’s scary!! And often it’s a rollercoaster of emotions. Parenting does not come with rule books and how-to guides. And as soon as you kind of think you have one kid figured out another child comes along who is completely different. Parenting is a privilege and a blessing, but one that should not be taken lightly. So every parent who loves their child unconditionally is amazing in my book!!

But as a special needs parent you just have a few extra responsibilities. You often have a list of doctors to call. Often you have to deal with insurance companies and other financial assistance companies and organizations. You grow to realize there are not a lot of helpful people out there to assist you, so you learn as you go and learn to be assertive and to be your child’s biggest advocate. You are your child’s voice in a medical field, which is often full of people who are just after the next dollar or who think your child isn’t as high a priority. If you had a special needs child you would learn all about the ends and outs of the medical field too.

 

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Then at two months old we got the news about how our perfect little baby may have some vision issues, and our special needs journey began.

A special needs parent often has to be more accommodating and a quick problem solver. A lot of special needs children have physical and social limitations that you have to work around. I know a lot of children with sensory issues who cannot handle loud places, even crowded restaurants. Parents bring noise canceling headphones to help them in those situations. For us, Abigail cannot sit up. For the longest time we carried our own chair for her to sit in when we went out. Now she is stable enough to sit in high chairs at restaurants. But often the hostess will not ask us what we need, so she will get a booster seat for the booth. Abigail cannot sit in a booster seat because she would slide right out. So then I have to go chase down someone to replace the seat with a high chair. It’s a mess. But if your were a special needs parent you would learn to accommodate in a world that is not often accommodating to people with special needs.

Often a special needs parent has to deal with medical issues with their child. Whether it is seizures, a g-tube, or a host of other symptoms, parents have to walk through these scary things with their child. Not to mention the surgeries that often come with these medical issues. We have been blessed not to experience any medical issues with Abigail, but I have talked to many a mother who has and it is always an awful part of their story. One mom even said they feel as if they are going through it with their child. As moms we are often more scared and hurt and worried about our children than they are. But if you were a special needs parent you would do all this too if you knew it was best for your child.

 

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While we don’t have any medical issues, Abigail has done a lot of testing. This was taken at the lab while we waited for her blood to be drawn for about the fourth time. I was over it – she was as happy as ever.

Often as a special needs parent you have to help your child in ways you don’t expect or teach them things that should come naturally. They are much more dependent on you. Special needs children need help doing even simple things like getting dressed and using the bathroom. I still have to feed Abigail all her meals and give her every sip of water or juice she drinks. We aren’t even considering potty training, and diapers may be forever in our future. We still carry Abigail everywhere she goes. I have to teach her how to play with new toys and how her hand can make a fist. But if you were a special needs parent you would do all this too.

Lastly, often our dreams and expectations of our children crumble before our eyes. No one plans to have a child born with autism or Downs or a genetic disorder. Often parents do not know anything is the matter with their child until they are months, if not years old. So by that time you have planned for them to be your older child’s best friend, or a star athletic or a well-known doctor. Every parent dreams about their child’s future. And often as a special needs parent these dreams are broken as diagnoses come along. But that doesn’t mean we don’t dream. It is just that our dreams and goals are very different. My dreams for Abigail has changed dramatically in the last few years. Now I want her to be able to walk, to have accepting friends and amazing teachers and doctors. Things I would just take for granted when I was pregnant with her. But if you were a special needs parent your would adapt your dreams and expectations too.

The fact is that I am not anything special. God didn’t gift me with any extra abilities to care for my daughter. I am not amazing in any way. In fact I mess up a lot. I am lazy and don’t do everything I should. I don’t want to deal with doctors so I don’t call all the time when I should. I want to do my thing sometimes and not spend every waking moment helping Abigail. I am selfish. But I am a mother of a special needs daughter, and I will do anything I can to help her achieve her very best. Yes, we have to do things a little differently, but this is my normal. Abigail is my normal because I have no other typical child to compare her to. I would be scared to be around typical toddlers because I don’t know what they do. Around here we just take one day at a time and enjoy the small victories. I am thankful for my daughter and for being allowed to be her mom. Abigail teaches me more than I ever thought she could. Her joy and determination are contagious!! I am thankful to be on this journey with her and if you were a parent of a special needs child you would be blessed in ways you couldn’t imagine too!!

 

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A Musing Mother

It happened again. We were in the waiting room of our doctor’s office waiting for Abigail’s eyes to dilate so we could go back to see the doctor. Abigail was in my lap eating goldfish and watching all the other children running around. Me and her are good people watchers. One particular father was having issues keeping track of his son. The little boy kept wanting to run away and run straight out the door, so the dad kept running around after him only for the son to escape again. At one point the dad sat down across from us and tried to offer his son his own goldfish, to try to entice him to be still for a minute I am sure. The dad made a passing comment that made me cringe inside. He turned to his son and said, “Why can’t you be calm like that little girl?”

It is not the first time that comment has been made about Abigail. Obviously, she is calmer than a typical two-year-old. I mean she can’t move for goodness sake. And this was not our first rodeo in a crowded doctor’s office full of typical kids. So you can imagine when parents are chasing after running toddlers, and trying to keep their young children occupied in a boring office that seeing my child just sitting in my lap calmly chowing down on her snacks could easily make you jealous. I mean selfishly does not every parent want an Abigail who does not move and get into things and all the normal toddler things that toddlers do? A selfish parent wants an Abigail, but a parent with any bit of love for their child would never wish this on their child.

I wish I could tell that father that he really does not want his son to be calm like Abigail. I wish I had the time to explain our story, but a crowded doctor’s office is not the place. That dad wouldn’t care. If anything we would just get all the pity stares from everyone when I explained why Abigail was sitting in my lap and not running around. We receive enough pity stares already, so we do not need those either. My favorite response from strangers are the ones when they comment on how cute Abigail is, or how her pink glasses are adorable, or how blonde her hair is. I just want to stop and thank those lovely strangers for taking time to talk to us and to see my girl for who she is and not what she can’t do. I know these comments will decrease and the pity stares will increase as Abigail gets bigger and we actually have to use her new adaptive stroller or wheelchair more. Kids in wheelchairs are different and our society does not like different. Right now that only thing that sets Abigail apart from a typical toddler (at least from what a stranger can see) are her glasses and we get so many comments about those!

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Abigail’s newest wheels – the adaptive stroller. We haven’t used it a lot but I think when we do this thing will get some attention.

“Why can’t you be calm like her.” I won’t ever forget that small comment. I would not wish any parent to have a child with special needs. It is a whole different world (that I am only beginning to learn about) that comes with struggles, heartaches, and a dash of hope. While I am thankful for our journey and I could not be more blessed to be a mom of a special needs child, I want more than anything for Abigail to be normal. I want her to be able to be the independent child that she thinks she is. I want her to be able to walk and run and just be a kid. I want her to play pretend with her baby dolls and help my bake a cake. I want her to talk my ear off in the backseat and tell me what a cat says. I want her to learn her ABCs and sing made up songs to me before nap time. Oh these are just some smalls dreams I want. I know she is progressing daily, and for every baby step we just cannot believe it. As long as she is moving forward we know there is hope that one day she could do all these things.

What I would say for any parent of young children out there is that I know the days are long. I know you are tired and maybe even burnt out. I know toddlers are crazy! I know you have amazing days and then you have some horrible days. But please don’t take these days for granted. Be thankful for them being toddlers. Be thankful they are learning how to be little people and how this big world works. Protect them, love them and be patient with them. Soak in every silly song, every kiss for a boo-boo, and the sound of those little feet running towards you. They grow so fast and they need you more than ever right now. And if you happen to know a parent of a special needs child, or just see one out and about please do not offer the pity stare. Just say hey like you would any other mom. Tell them their child is beautiful and get your child to wave at them. You will make that parent’s day I assure you. All a special needs parent wants is the same thing you want – someone to stop and give us a smile and say hey I notice all you’re doing and you’re rocking it!

And to all mom’s that is what I leave you with – you are rocking it! Keep going moms! Drink your coffee, take a shower, do whatever you need to do for you and then love those babies with all your heart. We are in this together, and together we can do this thing called life. So find some mom friends and encourage some mom friends and love some mom friends this week. We need each other!

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Parenting a Special Needs Child

“I have to deal with a lot being a special needs parent, but it’s also apart of parenting a child. Many people have told me that my strength is beyond their comprehension. We are often applauded for our care of him. I do appreciate that people realize we are working hard, but I don’t want to be a martyr because I am caring for my son. Any parent faced with our situation would take the steps they need to make sure their child has the best possible life. When you are put in this position, you have to dig deep and find a way to muster through the struggles. There are many days I feel alone, and frustrated and that I cry. You can absolutely tell me am a great mom, but I’d rather you say it was because he was a happy, polite, and sweet child.”

This is an excerpt from one of Katie Paulson’s latest blog posts, “I’m an Autism Mom: 5 Things you Need to Know about My Journey.” She is a fellow special needs blogger mom, and you can find her here: withoutacrystalball.com I loved this passage because I can so clearly resonate with it. A lot of people tell me what a great mom I am or how patient I am with Abigail. But I am really not. I get frustrated with her just as any mother gets frustrated with their child. She still fights her afternoon naps, and makes big messes. She whines when she doesn’t get her way and she pulls my hair and hurts me sometimes. I am no different than any other mother out there. I just have a special needs child, so this is our normal. You learn to adapt, and work around what your child needs and what he or she can or cannot do.

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This is Abigail ‘napping.’ She has learned to roll over in her crib and now nap time is the new play time.

I am not trying to raise my life as a symbol of victory for all special needs parents. This is just my life, and I enjoy sharing it with others. When Abigail was born we had no idea anything was wrong with her. She gave us our first scare when she was just a few hours old, but the doctors said that it was nothing and they sent us home after two days. We figured she was healthy, and we did not think twice about it. We were just trying to figure out life with a baby, and enjoying our new bundle of joy. We were not prepared for having a special needs baby. But because of her needs slowly unfolding over time, we took each piece of news in slowly. Each time we visited a new doctor or received a new test result we were able to digest slowly what was going on with Abigail. This is our life. I would not choose this for our daughter, but she is perfect the way she is.

I am not a special mother in anyway. I am not a more patient person. I am not more loving or more caring than anyone else. In many ways I am less patient and a lot meaner than I used to be. I simply am helping my daughter live her life to the best of her ability. Any mother who found out she had a special needs child would love their child and do the best they can do. That is all I do. Most days I feel like a big failure. I feel like there was so much more I could have done in those hours we had together. But I do what I can, and I try to do better the day after.

I am simply a mom to a special needs child. I love my life, and my little girl with all my heart. I would not have chosen this life for me or for Abigail, but it is our life. It is nothing extraordinary; it is simply life with a child with severe developmental delays. I appreciate every kind word spoken on our behalf, but I know any parent of a special needs child just wants a friend to lean on. We need a team behind us that is rallying for us and for our child. We need you to love our child no matter how they may look or act in any given situation. We need you to understand that this life is not what we would have chosen, but it is the life we have and we are simply doing what we need to do for our child. We are not anything special, and we surely do not have any more energy, patience, or love than any other person. We just have a child who is a little different than others and who is unwrapping their gifts at a little different speed than others. So please if you see a special needs parent, don’t look at us in pity or in awe. Please, see us for who we are, parents just like you, raising a child to be the best they can be.

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Our Connection

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I love this picture of us! Our hair is greasy, but those smiles are genuine. We had just recovered from being sick all week and I took Abigail outside to get some fresh air. That smile melted my heart, as it always does!

From the moment that seven pound bundle was placed on my chest I knew my life would never be the same. I was never one to dream about having kids. I never planned to get married really. But God had other plans for me when I met my blonde headed lover. I knew I would spend the rest of my life with this man about a month into dating him. And my man wanted kids. He was the dreamer of the family in that department. So a kid a got! And what a special addition she is to in our lives.

I had no clue what to do with this bundle. Abigail was born about 30 minutes before shift change so after the nurses had us all cleaned up they just left us. Jordan left me to go tell our family all the details and it was just me and Abs for a while in a room alone. I figured all the books said babies are hungry so we tried the whole eating thing and I had no clue what I was doing and literally no one to help me. I barely knew how to hold an hour old baby much less how to care for her needs. So while we had a few minutes alone we simply looked at one another, both trying to figure the other out.

I knew this baby would change my life. She would alter my dreams and my schedules. I still felt wholly unprepared to be a mom, but ready or not I was a mother and there was no turning back. Abigail was the easiest baby ever and for that I am thankful, and oh so very spoiled. Even as a newborn she rarely cried. I had no clue how to breastfeed, but she was a champ. I always say she did all the work, I was just there to hold her. She slept well even early on and she really wasn’t a cuddly baby. We would place her on the floor and do chores or cook dinner and she was as content as could be.

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Those fingers wrapped around mine…it’s a small connection but it means so much!!

When Abigail was about three months old we moved about 45 minutes away to be closer to my family. I helped part-time with my family’s business and my mom and grandma would often keep Abigail and just let me nurse her when she needed to be fed. This was our routine until my husband and I decided to move closer to his family and be nearer to a larger city with more job opportunities and opportunities for Abigail. We made our second move when Abigail was about 1.5 years old. It was then that I became a full-time mom.

Some people would argue that breastfeeding Abigail for a year is what connected us. And while it might have, I also believe if she had been given formula it wouldn’t have been any different. I truly believe our connection started when we made this move and I became the one person Abigail sees most often. I’m the one who wakes her up in the morning and puts her to bed at night. I take her to all her therapies and doctors. We go on errands and to the park. We play and exercise and do everything together.

This connection we have formed is deep and it is strong. When I’m in the room she wants me. She may hug others and laugh for a little bit, but she eventually tires of them and wants her mama. But lately I have noticed that we even reflect each other’s emotions. If I’m feeling sad or mad or upset I have realized Abigail’s isn’t herself. Just yesterday I was running a low fever and not feeling 100% and Abigail was fussy all day. There has been a few times where Abigail has choked very badly on food and I get scared so I end up scaring her and making the situation worse. Thankfully Daddy has always been there to calm us both down. But I have noticed this emotional connection we have lately, and it’s amazing to me that she can pick up on it.

I guess when you spend the amount of time together that Abigail and I do you are bound to learn the person. And Abigail know each other pretty well. Even though she lacks all forms of communication, I can usually figure out what she wants. She has her own way of communicating and I am thankful that we have such a bond that she trusts me to care for her in every way. I don’t know what her future holds, but discovering this deep connection with my daughter gives me confidence that we will be okay no matter if she can never walk or talk.

Just three short years ago I would have told you I would never be a mother, much less a stay at home mom. But now I am a mother to the sweetest girl in the world. And our mother/daughter bond is unbreakable! I want to be the best mother I can be for Abigail. I want you to know I love her and that I’ll always be there for her. And I pray this special bond we have formed continues, no matter what this life may hold for us!

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A Reflection on Motherhood

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Your day begins early as you prepare yourself and your family to start the day off right, or at least you try to start it off right but something is bound to get off track. You work hard all day whether it is at home or in an office, and then you have more work to do as the day winds down between picking up everyone’s messes or doing yet another load of laundry. The day is long, oh so long! But you are a mother and deep inside you know this is all worth it. These days will not be forever, and tomorrow will bring a whole lists of new things to do and worries to be had, so today you do your work to the best of your ability. Life is short and having children at home is even shorter, so today mother, treat this life as a blessing that will be short lived and enjoy every messy moment.

The role mothers take on is endless…

  • chef
  • fashion coordinator
  • secretary
  • taxi driver
  • photographer
  • daily planner
  • teacher
  • doctor
  • cuddler
  • discipliner
  • zoo rangler
  • lover
  • fighter
  • maid
  • librarian
  • chorus director

…and that’s not even all of the roles! We wear so many different hats, no wonder our mama brains are like scrambled eggs up there. But each of these roles means the world to our children and our family. They need us to be there through it all as they become the adults God has planned them to be. While it is a headache to be everything to everybody, the good thing is that we are not called to be anything but a child of God, and a mother to these precious children. So often we attach other titles and jobs to ourselves that the world tells us we have to do, but no where does God say we are called to be anything but a mother to these children. So let’s mother them the best we can, and go back to the simple truths of God’s Word and what He has called us to.

Emily and Laura from Risen Motherhood (you can follow them on Instagram @risenmotherhood. They also share a weekly podcast if you are into those!) shared a wonderful tidbit in their Instagram post today. She was asked, “What does the church need to give moms this Mother’s Day?” Her answer goes with exactly the point I am trying to make. She replied, “What moms really need to hear isn’t a burdensome statement about the hugeness of their calling, a heartfelt thanks that can sometimes fall on deaf ears due to guilt, or a list of ways they can do even better in motherhood…What the moms really need, if we are to give them the strength to run the race set before them, is a reminder of who they are and what they have in Christ.” Thanks Emily! What beautiful words and big Truths!! Moms need to be reminded that they are daughters of God himself and in Him they can find rest, hope, faith and love! As moms we must be so plugged into God that He is what makes us function and live. Our children need us to be so in love with God that they see Him through us! On this Mother’s Day let us remember who we are in Christ and what He offers freely to us.

Mothering is hard! Parenting is hard! But God has given us these children to raise to honor Him, so let us run our race faithfully. May you always be reminded that you are worthy and have a purpose in this life. As you change bed sheets and wipe dirty faces for the twentieth time that day may you remember that this to is God’s perfect plan. Motherhood was created by God to bless families from the beginning of the world. Without mothers children would not learn fully to love, care, and share emotionally with others. Mothers and women have specific roles that fathers and men cannot fill for God made us each unique. So mother your children as God has so given us the ability to. Mother them knowing that you are a loved and blessed child of the one true King. Mother them knowing that soon these children will be mothering and fathering children of their own.

Today may all mothers, grandmothers, and soon-to-be mothers all be blessed in a special way. May we always be thankful for the mothers in our own lives whether biological or not. Mothers are special gifts not to be taken for granted. And to all the mama’s out there – you can do this!!! Happy Mother’s Day!

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In honor of Mother’s Day here is a picture of when I became a Mommie!!

The Perfect Mom

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I am not perfect. In fact most days I am not even that good. I spend more time on my phone and on social media than I would like. I get impatient with Abigail. I brush off her whines to be played with or held so I can finish that one load of laundry that just has to be done. I am selfish with my desires and time. Often at the end of the day I can see the moments I should have done things differently or had a better attitude or reaction to something that happened earlier in the day.

However, despite my imperfections I love being a mom. God blessed me with my daughter and she is my responsibility to raise, and I am thankful for this even on the hard days. Raising children is not easy. They need a lot of things and attention especially when they are young. I know the teenage years come with its own list of demands and worries as every new stage of childhood does, but right now I am in the infant, dependency stage. To think that God gave you children to raise is a huge honor and one not to be taken lightly. So often we forget the big picture as we struggle through the daily grind of dirt, feeding, and playing. We forget that we only have these little people in our lives for a short period of time before they grow up and leave our houses to build lives of their own. Babies do not keep. Babies become adults out in the world who have an impact for the good or for the worse. We all want our kids to be world changers and lights in a dark world, but are we modeling that in our homes everyday with our children now?

Motherhood is a blessing. Those little arms that reach around you at just the perfect time make your whole day better. Watching your children learn and discovery as their personalities bloom in front of you is a treasure in and of itself. Knowing that this little child will soon be replaced with a man or woman making their own decisions, makes you want to store every possible memory of them you can. Yes, days can be long between the complaining, whining, cleaning, and hunting for that lost shoe. But God gave us children to enjoy, to nurture, and to teach and He trusts us with that precious child each and every day. Motherhood not only shapes the child, but it transforms you too as you learn from those precious little lives about child-like faith, dependence, and brings you face to face with your own selfish desires. God uses motherhood to mold us as we mold our children after God.

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Children are a blessing. I still remember the first day we went to listen to Abigail’s heartbeat at the OBGYN’s office. We were about 8 weeks pregnant. I had already been experiencing night sickness for about 3 weeks, but that tiny whoosing on the monitor made everything just stop for a moment. I wish that they could give every mom a recording of that precious sound. It is the sound of life. Children bring life into everything they touch. They bring joy and laughter and fun. The way they see things is astounding, and makes you realize how much the world influences you daily. Children find more joy and laughter in the simple things of life. They would rather play in the giant cardboard box than the new toy they just received. Children make life seem so simple, and they can teach us so much.

I know I am not a perfect mom, and I know I never will be. Mistakes happen, reactions will come out too fast, and time will be mismanaged. However, I want my kids to know that I was the best mother I could be. I want to be their mom that they love. I want them to know that they are loved and that we are so proud of them. I want them to know that the love God has for them trumps my love 100 fold. I want them to be children, and let innocence reign for as long as possible. I want them to feel safe in my arms, and know I will be there to support and encourage them all day, every day. I want my children to laugh and love. I want them to be different than the world, and shine in the darkness. I want them to know and understand the Truth and know God’s Word. I want my children to love one another and love others. I want them to not be afraid to be who God created them to be.

Today, I pray, not to be a perfect mom, but to be the mom Abigail needs. I pray that you will be the parent your child needs. Let us remember the big picture, that these children will not be children forever. God gives us these little lives only for a short time to raise, and then we send them out. But they are not alone! Our God who loves our children so much more than we ever could is with them every step of the way. Let us remind our children of that daily, and then remind ourselves of that even more. May your season of motherhood be blessed!

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