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To the Perfectly (Imperfect) Special Needs Mom, let me tell you a little something about YOU…

You are the quintessential every woman. Day in and day out, you clear the way and make it possible for miracles to happen. If there were an award for “Mom Who Shines Brighter than the Sun”, you would win it, hands down. The world sees you, juggling your life and the life of your child, making it look so meaningful and effortless. Special, even. Those who have the privilege of watching you mother, believe that you were chosen for this “assignment”, and wonder how you are able to keep a smile on your face and a laugh in your heart. You meet each day with a child who isn’t like all of the others, who isn’t like theirs, and yet you haven’t seemed to fall apart over it yet. Your family and friends often say, “I have no idea how you manage to handle it all so perfectly”.

Well, the fact of the matter is, you don’t. That would defy the law of gravity. 

There is no special strain of DNA that enables you to give the extra care your child demands. You were not born with supernatural strength or a heart of steel or faith that never waivers. What enables you to give so much to you child is LOVE. Good old fashioned, uncomplicated, straight from the womb to the center of your world – LOVE. The same love that drives every mother. The only difference is that your love has more requirements. You have to carry your baby longer because they haven’t yet learned to walk; there are countless doctor appointments that must be made and endless meetings that must be had. You must be more patient, more flexible, more forgiving. More hopeful. Your ER visits may be frequent and your child’s development delayed, so you make it through. You adjust. You take it all in what looks like stride. Because you love. Your child’s happiness is your mission.

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You seem like a perfect mother, because you work so much harder than other mothers. But the world doesn’t see the other side. The world doesn’t get to see the imperfect side of you. The way you fall apart in the still of the night when you think about the uncertainty of your child’s future after a new diagnosis. You wonder, when the next miracle will come, that one step closer to “normal”? The questions haunt you. Will my baby ever marry? Have children? Turn in a paper late to their professor or need my help practicing for the school play? More often than not, you are tired, and overwhelmed and heartbroken.You are human.

Life, now means constantly struggling to find balance. Cuddling up with a good book and cup of tea in your room or an extra hour of speech therapy? A weekend getaway with your love or a weekend of doing everything? A day off of work to catch up on things or a day of doctor appointments? You sacrifice the quiet moments more often than not because you hold the same dreams for your child as the parents of kids with regular needs. But to have any chance at seeing them come true, your child has to work harder. So you work harder. You have no other choice.

At your 9 to 5, you are amazing at your job. No one can tell that your heart and mind are often somewhere far away, wherever your child may be. You are forever the new mom just returning to work, dealing with the sadness that you are more needed somewhere else. And who really are you, now? You sometimes wonder if your husband thinks you’ve lost “it”. And maybe you have. Because your free time is never really yours, so there is no time to find “it”. “It” is a lot of work and doesn’t seem very important anymore. Your child trumps “it” every time.

And then there are those dreams of yours, the plans you had for your life before you became a mom. You feel so guilty about wanting those things now. Partly because chasing dreams means sacrificing time with your child, and partly because it is hard to wish for the kind of success your child may not have the chance to attain. You sometimes tell yourself that you no longer matter. That God assigned you to be the mother of a child with special needs so you could put aside your own. You often get beyond those kind of thoughts, you know better – but the struggle is real. The struggle is OURS.

See, these are the things I know because I am one of you. And honestly, these are the things that make me proud to be member of the “Special Needs Mom Club”; the things that set us apart from the rest of the world. Our truth. Selfishly loving our children unselfishly. The world is right to be amazed by us. We do ROCK. We give everything even when there is barely anything left to give. And we are in it for the long haul.

Dear Perfectly Imperfect Special Needs Mom, be proud of the weight on your shoulders. It has made you strong. It has kept you humble. The proof of it is in the gratitude you find, in the smile of the child who calls your name, without ever saying a word. The child that you will forever, and in every moment, pray for.

Live for.

Perfectly. Imperfect.

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5 Things all Preemie Moms Want Pregnant Moms to Know

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From the moment we find out they exist, all mothers begin dreaming for their children. No matter the circumstances that surround our pregnancy, we all hope for a healthy, happy baby who will leave their mark on this world and our hearts. We see their faces in our sleep, imagine holding their hands as they learn to walk, and find moments where the excitement is so intense that we want to reach in our uterus, pull the baby out and cover their little faces with kisses– mommy kisses.

Then, there are moments in our pregnancy when we are intensely emotional. If your pregnancy is a difficult one, those moments are far more frequent. We are fearful of the unknown; we have pain, worry tremendously, and complain. We are even a little bit selfish in our desire for the ten months to be over. Morning sickness, getting fat, and dealing with the aggravating people in our lives –it can feel like too much at times. Both sets of moments are real, and fair and normal. All mothers have them.

But the latter, is what we preemie moms, want you to consider doing less of. Entering motherhood earlier than expected has changed the way we look at pregnancy. For us, pregnancy is the real MIRACLE. We would give our right arm to be able to go back to ours and enjoy every bit of the worry, pain and annoyance that comes with growing our baby to term. At night that is a lingering prayer in our minds, the “what if” that takes us years to let go of. We know that if our pregnancies had been longer, our children would have been born healthier. The conditions in the womb during pregnancy are just as important to your child’s life as the condition of the nursery we decorate for them or the home we prepare for them. In some ways, the womb is even more important.

So pregnant moms, on behalf of preemie moms everywhere, here is some advice. It comes from hindsight, and from experience. It also comes from heartbreak. We understand that you, mom, will rarely be as powerful and beautiful as you are right now. Take hold of that. In a nutshell, for the next 40 weeks it is both all about you and not about you at all.

1. There is Nothing More Important than your Happiness. In your belly, there is a life forming. There is nothing more important to that process than a healthy, happy, joyful, expectant mom. Our lives are complicated, hectic and unpredictable. Your baby’s is not. His or her needs right, now, are simple. They need YOU. Your child did not ask to be born, so it doesn’t deserve anything but the best of you. Speak positively, smile often and rub only goodness into that belly. Stock up on happiness. For bad days, keep some in reserve. Your baby will grow off the energy you give to him or her. Vitamin H is essential.

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2. Speak Only Positive Words. Pregnant moms experience much to complain about. But be careful of the words you choose when expressing your feelings. Be careful not to say things that are negative towards the baby. A preemie mom shutters at the sound of a pregnant woman saying, “Oh, I can’t wait for this to be over”. We all said it, and now regret it. Instead say, “I can’t wait until the 40 weeks are over and my child is born.” Both have the same meaning, but one is more positive and specific. Be cautious of what you put out into the universe. Our words have power.

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3. Try Your Best not to Worry. No one knows more than NICU moms that sometimes things go wrong. But most of the time, they don’t. One of my favorite scriptures, instructs us not to worry about tomorrow, for tomorrow will take care of itself. Spend your mental energy hoping and praying for everything to go right. Don’t fret over what you cannot foresee or control. Our self-inflicted fears of pregnancy are not worth the anguish they cause. I remember spending at least 20 percent of my pregnancy worrying about the labor. I hoped for a C-Section. I did not know any better. My labor was easy, and I got that C-section, but I also got a 5 month NICU sentence. I now wish I had spent more time, for my son, celebrating instead of worrying about his entrance into the world. And moms, if a doctor is the source of your worry, take heed to their precautions, follow their directions, but don’t let them overtake your journey. Listen, be aware, but choose faith. Faith has saved more lives than a doctor ever will. And no matter what, God is in control.

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4. Take it Easy. Mom to Be – PLEASE RELAX. Be lazy. Let everyone else do all the heavy lifting. We know that many of us have to work during our pregnancy, but you do not have to work your butt off. Slack off instead. Call people to do things. Don’t rush. Exercise if you must, but go lightly. Doctors and nurses and “experts” will tell you that you can do your daily tasks normally, but then if something begins to go wrong they will restrict you. We say, restrict yourself. Don’t wait for a doctor who doesn’t love your baby to tell you what is BEST for him or her. And don’t wait for something to go wrong. All of that activity can wait. Stay on the safe side. Your baby is worth it.

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5. Listen to Your Body – So many times us preemie moms felt warning pains, or that things were not right, and we didn’t act on it. Maybe we called the doctor the first two times and they checked us out, but told us everything was ok. Certain pain is not OK and you will know the difference. Remember that your doctor has seen plenty of moms, but each pregnancy is unique. No one knows your body better than you. Listen to it. Sometimes it may just want you to rest. Other times, you may need a change of diet. Don’t worry, just figure it out. So many preterm births could have been prevented by bed rest never administered or precautions never taken. Pay attention to your body and never hesitate to call if something doesn’t feel right. You are not being a pain, you are being a mom.

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See mommies to be, no one ever really wants the pregnancy to end early. The dreams and visions we have while our children are forming, are all starring big ole eight pound babies. In none of our visions are NICUs, and one pound newborns. We don’t envision tubes and monitors and isoletes. We envision the perfect end, but we often take the process for granted. We should try our best to see pregnancy as a precious gift to be treasured, enjoyed, and experienced to the fullest. No matter how long it is.

Moms to be, we are so happy for you. We want you to rock this. We want you to take the ball to the 40 yard line. Your child is a rare jewel that deserves the best conditions for safe keeping. And you deserve a jewel that is full grown.

Moms to be, we wish you the longest, most annoying, most beautiful pregnancy imaginable – as intended.

 

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