Testimony from Megan
In April 2011, we were blessed with our second child — a little boy named Whit. He was precious and perfectly formed. But there was an unexpected complication… Whit was born with brain damage.
We soon found out his reality: he does not walk, talk, eat, roll over, reach, laugh, or purposefully do anything. He came home with an array of equipment, a curious big sister, and nervous parents!
It didn’t take us long to realize we had to figure out our “new normal.” We were thankful we had two precious children, my husband had a job, and I had a home to run, but the special needs world can be difficult to navigate and we found the two commodities we often lacked were time and money!
Through trial and error, we have learned a few tips for saving some of each:
1. Take One Day At A Time
The nature of our life is unpredictable. Whit gets sick often and quickly! No two days are ever alike.
My desire for some semblance of normalcy, however, is still there. After trying many different schedules, it finally dawned on me! We live day-to-day, so that’s how we should plan!
Every morning, my daughter and I sit together to make “our list.” She enjoys the freedom to add some of her favorite things, too! Things get accomplished, daily life is streamlined, and everyone seems more content.
2. Simplify
Things are boring around here — aside from the kids! Meals are simple. We have downsized to one car. Outings consist of the library or a walk outside. Whit’s tragic situation has given us some perspective: not only is simplicity okay, we love it!
3. Give Yourself Some Grace
I can’t remember the last time I scrubbed baseboards… I have no idea when it was! And I am completely okay with that!
I have learned to let go of some things in order to hold my family closer. Sure, we hit the basics (no one wants to live in a dirty house!), but have I vacuumed under the couch cushions lately? Not a chance! And sometimes, that’s okay!
4. When In Doubt, Bring Food
We go to appointments… All. The. Time. It is worth it to spend the money on groceries our family enjoys versus paying much more for a single meal in a drive-thru. We have saved so much just by having a picnic in the car!
5. Bring Those Siblings
Our daughter often accompanies us to appointments for Whit. We save money on a sitter, but I firmly believe this is opening her eyes to a world often unseen by other children. Yes, it saves money, but the lesson in compassion is worth more.
6. Why Spend If You Can Borrow?
Our town is relatively small, but there is a wealth of organizations that have loaned us equipment. It’s often second-hand, but always serves it’s purpose. Before you spend all that money, just ask someone! The worst they can do is say no.
Megan is a lover of Jesus, Bret, and her precious babies! She’s living her dream as a stay-at-home wife and mother. Since having Whit, her desire is to encourage families as they journey through the world of special needs.
Mary Tremayne says
Our son just turned 30. He has taught our family, friends, church families how to love and support other families. Our girls are the most compassionate to others. It truly taught them about Loving others. Life also taught us you don’t need to know or have everything right now. You grow with the changes. You get what you need, when needed. There is also a whole network of other families to glean information from. Also YOU know your child best. God gave you that intuition. Also accept all the grace given to get you through those days.
When a friend offers to take the sibling while you go to the Dr. Take them up on it. Great for all of you.
Jennifer says
So good to see. Special needs parenting requires your own pace and direction. It is often a challenge to participate in budget activities And plans as they take precious time and energy we don’t have. We do our best and carve our own path.
Denise says
Thank you. My daughter was born with spina bifida and several other issues. I have used some of the same strategies. Having a special child can be a blessing but it can also be isolating, so it is very encouraging to read something like this and realize that you are not alone.
Karen says
Thank you so much for this post. At times, it seems as if I am the only one raising a child with special needs. Our little girl was born at 2 pounds prematurely and with Down Syndrome. It can be overwhelming, but I decided a clean house doesn’t help train a child to be a functional adult. Also, we do #5 too. I prefer no sitter, and want her sibling to experience the journey also. Our little girl’s journey can be found at http://www.caringbridge.org/visit/madisonbarnes9.
Much love to you and your family!!
kathy says
Thank you for this article! While we do not have a special needs child., we do face some of the issues you mention ourselves due to multiple health problems. You brought up some things for me to think about that I feel would help us. May God bless you and!your family today and everyday!
Jennifer says
This brought tears to my mind and reminded me to give thanks for my two non-special needs children. It also reminded me to be more empathetic to my friends with special needs kids. Thank you for writing and posting.
Jen says
Thank you for sharing this!! They are all great points! The ones that stuck out the most at me were: #3 is where my mom really had issues with me. Growing up, cleaning the house (including scrubbing windows and baseboards) came before anything else, including family time. My husband and I have chosen differently. I agree, my house isn’t unsanitary, but it has a cobweb in the corner sometimes, a couple cheerios under the cushions, and certainly some dusty baseboards…lol! So it’s always wonderful to have support in this area. I also love #5. My toddler has been to every one of my pre-natal appts except for one. There is no way I could have afforded a baby sitter at every one, especially now that they are getting closer together. My little guy and I go everywhere together, and if he can’t go, I usually don’t either. I have given a bit of grief over that too. But he’ll only be little for a short amount of time, so I don’t see it as being tied down or whatever people think. I’m blessed to have been shown this time is precious and being able to take advantage of it. God Bless you and your family!!
Donna says
Here’s another mom to special needs children – we’d adopted two of them. Normal for us also includes a pluse-0x and g-tube, along with trachs and suctioning, wheelchairs, diapers for many years, unclear speech, prosthetic leg, etc. But, it also includes giant smiles, deep, emotional eyes, funny sounds, and tight hugs from a little girl with two arms that end above the elbow.
Life became a new normal and that normal continues to change as they grow. For us, the appointments have lessened considerably now, but in those early years, my older four homeschooled children spent many, many hours in waiting rooms.
One tip for you, I got 4 plastic shoe boxes and filled them with little toys, books, crayons, etc. for the 3 year old sibling (the others could pack their own). I kept them on my closet shelf because they were only for taking to appointments. Each time we had an appointment, I took one shoe box with us and handed it to the 3yo in the waiting room to play with while we were there. Then, back at home it went back on my closet shelf. The shoe boxes were rotated for each appointment. They were only for use in the waiting room, not in the van. It helped some!
Enjoy Whit – he’s God’s gift – fearfully and wonderfully made!
Elizabeth says
Thank you so much for sharing.
K says
I cannot begin to explain what a blessing this post was to me. I was moved by the unconditional love expressed here. I was inspired by the grace God has given to Megan and to the commenters who have special needs children. My attitude of gratitude was definitely re-booted. Many blessings to Megan, to the many families who identify with her, and to the commenters who encouraged her! Thanks for the post, Megan and Crystal!!!
jamie says
Thanks for this story. You are so right that life just becomes a “new normal”. When people always ask how we handle life threatening food allergies as if it seems impossible…I am always surprised that it seems that way. Because to us, it IS just normal. We also follow all your bullet points and honestly it’s a lifestyle that I love and embrace. Simple and togetherness is what makes our lives a lot easier with food allergies. God bless your lovely family.
Aimee says
You have such a beautiful family, Megan! Thank you for sharing your testimony. Prayers to you all.
Sara says
Megan;
A woman once said to me “honey you must be very special in God’s eyes, look at the wonderful gift he gave you” I am now passing this onto you. My daughter too was born with multiply issues. However, these are the words that helped me day to day. Don’t listen to everything those crazy doctors say. My daughter would fall when walking I put her in an Equestrian Horse Program when she was three. I had to ask her theripist time and time and I even think I begged for the program. She walks today. STAND ON GODS PROMISES.
Chandra says
Thank you for this post. I am a mom of 2 adopted children. Our youngest has autism, bipolar, adhd and MMR. Our older son started to develop mental health challenges when he reached the teen age years. I quit my full time job a little over a year ago because my kids’ needs were so large. I wasn’t sure how we were going to make it. Thanks to websites where other moms have shared their encouragement and experience, we are making it. God has blessed my decision. I find more abundance in my lifestyle today and finding our own “normal” than I did when we had more money. God bless all the mom’s here and an extra special blessing to all the parents of special children. We get to put the gospel in action with the love and care we give our kids.
L says
Thanks for sharing your awesome story! You have a beautiful family! You will be rewarded for loving both of your children, especially your son with special needs!
Chelsea says
Thank you so much, Megan, for sharing your testimony and how God has worked through each of your children. You’ve definitely inspired this mama!
Sharon says
Thank you so much for sharing! Two of our three boys have autism. They are sweet, happy, smart boys. Their therapy is very expensive, even when our insurance FINALLY began to help with the cost. It’s hard news to hear that your child isn’t “perfect” or “normal.” It took me some time to realize that I cannot compare my boys and my family to others. Our challenges are different. (My house may be messier. Sometime we don’t get to bath time. We probably eat hot dogs and more often than we should-LOL). BUT it’s makes the success so much sweeter and I do feel blessed to have these amazing guys in my life.
A verse I have carried close to my heart through this journey:
Isaiah 41:13 For I, the LORD your God, hold your right hand; it is I who say to you, “Fear not, I am the one who helps you.”
God’s holding my hand AND the hands of each of my boys. No better help than that!
Thank you for sharing your story! You have a beautiful family!
Kathy says
Just signed your guestbook. What an amazing story of love! My prayers are with all of you these coming weeks and months. You are such a beautiful testimony of resting in the Lord’s will.
julie says
I just wanted to say THANK YOU! Thank you Megan for putting this out there! And thank you Crystal for posting this! I am a single mom of a special needs child too. It makes my heart happy to see others living so hapily in what they have 🙂
Ashleigh Pruett says
Our family has the honor of knowing the Golsons and we are thrilled to tell you they are the real deal- we have learned SO much from them and this journey they are on. Thank you for featuring them!!
Jessica says
I’m a sibling of a special needs adult. Mary was born when I was 3.
Mary was born at 23w5d of gestation and not expected to live. She just had her 30th birthday.
Due to her severe prematurity, she is deaf, blind and profoundly mentally retarded. She is developmentally like a 6-9 month old. She does not sign or communicate in any way. She is ambulatory.
I would add to your list to not forget to spend individual time with the “normal” sibling. My childhood was taken from me because of my sister’s tremendous needs. I never got to be a kid. I had to babysit her when I was 9. I couldn’t do anything after school, ever, because I had to babysit so my dad could go to work. He worked afternoons and mom worked days.
I have taught my daughter and will teach my son and my upcoming third child also, about how everyone is different and some of us are not able to do things that others can. This pertains to all types of things. I have a friend who is a professional ballet dancer and another who is a widely published artist, for example. I cannot dance or draw.
Anna says
I agree 100% with your statement about siblings. I have one child with special needs who is 3rd in line of my 4. The older 2 girls are not expected to assume care for their special needs sibling who is medically fragile as well as physically challenged. We do most things as a family so I am usually there to care for my special needs child. If I have to leave my kids for an extended period of time I either get a babysitter for the younger ones or I pay my older ones to watch their siblings. I don’t use my older kiddos as regular babysitters but sometimes they do like to earn the money. On the flip side, my girls do know how to take care of their special needs sibling and know the routine as they have been a part of their sibling’s care since birth. It is a fine line but I am my special needs child’s mom and I do not expect my older girls to take my place. That is just me and my family. Other families may do things differently and that may work better for them.
L says
I agree with you as well! I am the mother three children, my youngest being severely autistic. My children help out often with their brother (and I am so thankful for that) but we also have a PCA who helps us as well. In saying that, I make sure my girls still go out for activities of their choosing (tennis, basketball, softball) and band. Basically these activities are almost year-round as they have camps/leagues that go throughout the summer. I also never say “no” to going to a friend’s house or going to a football game, etc. And it is crazy! I realize their lives are so different than any of their friends and sometimes I feel bad about that. But I also realize the “life lesson” they are getting that their friends are not. Loving someone unconditionally. And without a doubt, they would do anything for their brother.
J says
I agree too. I have not stopped my other 2 DS’s from being involved in sports, but I cannot attend their games with DS 3 (he has autism). I tried taking him to DS 1’s baseball game & he spent the entire time running up & jumping off of the bleachers, or running away. Taking him to their basketball games was torture for him, too much noise inside & he had his hands clamped over his ears & was distressed. So DH takes them to their sports activities & scouts & I stay home with DS 3. Our nearest family is 12 hrs away & babysitters are just too expensive. I don’t want to deny my older 2 of a “normal” childhood.
Candace says
I’ve been a MSM follower for years, and decided today that I should unsubcribe and minimize my inbox a bit. Not b/c I want to, but b/c I am a mommy of 2 little boys…one w/autism. What a way for me to go out! Personally, I think this post was God’s gift for me. I so appreciate what you shared. Very encouraging. Blessings to you and your family.
With Crystal being pals w/Dave Ramsey, maybe should could ask him to add a chapter to his book about staying on a budget AND having a special needs kiddo. 😉
Christy says
This would only put a minor dent in a budget, but it is a thought or maybe just a way to get a few hours respite. I am involved in a ministry at church called the Bridges Minstry. The ministry provides Sunday School for special needs children so parents can attend adult classes. We also provide a monthly respite night where parents can drop off their special needs children and siblings and have 3 hours to themselves. For one family, finding Respite night was their first date night in 6 years. I know other churches in our area have started similar programs. It is so hard for some families to find anyone willing or qualified to sit for special needs children. The program is run by a lady who is an early interventionist. Several special ed. teachers help and there is always a nurse or PA helping out too. It is free of charge and you don’t have to be a member of our church. We have a lot of fun too!
Lee says
Yes the “new normal”! I must admit it was not something I accepted willingly. However now 6 years after my sons diagnosis I can’t imagine my life any different! And I couldn’t tell you the last time I vacuumed under the cushions either!
Andrea says
I feel these suggestions can apply to everyone.
We mostly take one day at a time and try to enjoy every moment with our four (soon to be five) kids. We try to incorporate everyone’s suggestions and needs for the week, so every day is different. For me, life is too short to get hung up on schedules and worry too much about cleaning. We found out yesterday that our oldest has to have unexpected surgery on Monday. Because our days are so flexible, I don’t have to worry about missing anything next week while at the hospital or caring for her during recovery.
Some people don’t understand our lifestyle, but I feel that it is working well for us!
Leanne says
I love this blog, but I’ll be the first to admit, sometimes it seems like you get SO MUCH accomplished, that I feel…gulp… totally inadequate….
this post reminds me that our goals have to fit our life situation…not someone else’s life situation! I loved this mom’s post!! thank you so much! and I plan on following Whit’s story!!
Sara@Save Money, Live Joyfully says
I’m in tears right now….we just returned from a doctor’s appt that confirmed some devastating news about our 4 month old born with special needs. I had just finished writing to my friend that “Life is a new normal now” when I came to Money Saving Mom and this article was the first thing on the page. God knows our needs and will give us the strength to make it through every day.
Amy says
Hugs and prayers for you!
Champion's Mommy says
It is so amazing how God gives us the encouragement and strength we need right when we need it. You will see it happen so much on this journey. My heart and prayers are with you as you navigate life as its “new normal” and as you cope with the news you heard today.
Melissa says
Just checked out his page & am in awe of the strength & love Whit’s parents have. Makes me so guilty for complaining about the little things that don’t matter like waiting in line at the grocery store or my neighbor’s dog that barks. I needed that reminder & pray for God’s continous hand on Whit & his family as they live this journey together.
Mary K says
Megan, I love your great attitude! I commend you for being positive about your new normal. Thanks for sharing!
Leigh Ann says
Thank you so much for sharing this… I can relate, I have a now 16yo with Rett syndrome, she requires total care. I also have a son with ADHD/Aspergers. Life is very different that of our friends.
Living this way for so long, I want to add this as well, stand up for your needs. People expect much in the way of parent volunteering, church activities, etc. know when to say no, and gently remind those around you of your family’s limitations if they push you to do more tha you are comfortable doing. And do not feel guilty. Also dont feel guilty about taking time for respite for yourself and your family.
Your son is beautiful and God bless you and your whole family!
Bethany says
Thank you for posting such an inspirational story. I have two sons ,both who are autistic although one is high-functioning, and one has Down Syndrome .. honestly every day is crazy but like your guest poster said, you just take it day by day. Please moms take joy in every day — my kids are different from others and a handful at times, but they have taught me more about what life really is about than I’ve learned on my own along the way. God bless you all ~~
Anna K. says
I don’t have children (yet), let alone a child with special needs, but I just wanted to say that I was touched by this post.
Similar to what some have said earlier in the comments, I’m close to multiple families who have shared with me that their special needs children were a huge blessing in their lives because of all that the family has learned and the spirit of unconditional love that is present in their home. You may not realize it, but these blessings and the spirit of love extends to others as well when you share your story, so thank you so much for doing exactly that!
christina says
a beautiful and inspirational story =)
Laura says
Best post ever!
Katie Martin says
Thanks for sharing. I have two special needs daughters one with Cerebral palsy and another with Down syndrome and then three other children in the mix as well and yes it gets very crazy around here and sometimes I get frustrated that we can’t have a “normal” schedule but like you I have come to the conclusion that our “normal” schedule is what works for us not everyone else.
Michelle Bonk says
We have a Downs baby and a cp baby at home as well (as well as their “average” brother and sister!). It sure can be crazy but oh so much fun too!!
Amy Hunt says
I too have a child who experiences disability. I loved this post. Great suggestions. I think some of us are our own toughest critics, giving yourself room to not be the perfect housekeeper and learning to ask for help are huge obstacles; Letting them go makes your life so much easier. Thanks for posting.
Sandra C. says
Whit is a blessing to this family. This reminded me of a song one of the men in our church sings everytime he sings. “One Day at a Time” is how we all have to live our lives. You are really doing just that. This family will be added to my prayer list.
Anna says
Single mom of 4 here. I have a special needs child who was born with cardiac defects as well. While we hope for the best, the reality is my child will live a shorter life span than other children. With that said, I say ENJOY EVERY MOMENT you have with your children. We live a “normal” life but I try to make each moment, each day, and each week mean something. I have a blessing ceremony each time my child hits a milestone (and by the way we do it for each child so everyone is treated special) no matter the milestone! We also LAUGH as much as possible! We watch silly movies and play silly games! 🙂
I budget medical expenses each month into my spending plan. I then have money for those extra visits. I limit how many medical visits my child goes so we are not at the MD office every day (unless really needed). I’ve learned that many things are not necessarily an emergency. I also take my child to the same physician or urgent care because I have wasted too much time and resources on health care workers who don’t know my child. Just saves me time and energy.
I also take care of myself. If I am not in good health I am of no use to my kiddos.
I organize all the time! I set goals all the time! I use these tools to guide my life and try to remember that as long as I am following the light even if I veer off a little sometimes I am making progress.
I also say be FLEXIBLE always. If you have a child who gets sick often then as a parent I have had to learn that I can’t waste emotions or energy when a child gets sick. We ADAPT!!! I try to plan but not control life.
Include your special child in everything! I have been so surprized at what my child has learned just because we included her. She can dance!!!!
Excellent points. Good posting. Not much on parents who live “day to day” with children with special needs.
Anna says
These postings brought tears to my eyes. I love my child with special needs so much. She is the bravest child I know. I count every day that I have with her as a blessing and am honored that God gave her to my family. Her eyes light up with love every time she sees me (or her siblings). I work full time outside the home but I cannot wait till I get home and see my child (and her siblings). When she is sick and I have to balance work and her special needs illnesses, I get a bit overwhelmed but I still look at her with all the love a mother can muster and thank God under my breath for this precious gift. Sometimes I am so tired but hearing my daughter laugh makes all the hard work worthwhile because I know someday God might call her home.
Love all your children with all your heart is what I think.
Jamie Lyn says
As a long-time MSM reader, it was a great surprise to find my sweet friend Megan was a guest poster today. 🙂 Thanks so much, Crystal, for letting her share their story. I hope it will bless others just as it blesses those of us who have the privilege of knowing her family in “real life.”
Jessica Claire says
Thanks for sharing!! Our youngest was born with some special needs. Although we knew several months before he was born, it is still nothing you can prepare for. The first year, he was in the NICU for a while, then in and out of the hospital. Now at 18 months, we are looking at a rehab hospital for him. It will be a 3 month stay at the hospital for him and I while my husband and 6 year old are home. When people ask “how do you do it?” We reply with a simple, “We’re busy! But we wouldn’t change it for anything!!” Even with everything he’s gone through, he is the most happy kid I know. I have found that the more support you give your child, the better off the’ll be. Special needs or not! Sounds like Whit has a great mommy and family and he will go far with that kind of support!
J says
Your children are so beautiful. You both are so blessed.
Champion's Mommy says
I feel relieved hearing another mom say she just lets some things go. I love your philosophy with your daughter and her coming along for appointments. Thank you Megan for this testimonial and thank you Crystal for posting it.
Sara@Save Money, Live Joyfully says
Champions Mommy: Your son is beautiful. I love his smile.
Champion's Mommy says
Thank You 🙂
Jen says
Your son is beautiful! I popped over to read a little about him, and it brought back SUCH memories to see Miller Dieker.
My beautiful daughter, Jocelyn, was born in 1990 with Walker-Warburg Syndrome. We were members of the Lissencephaly Network, and at the time, there were only about 3 other children with WW. Most had MD or ILS. It was so different back then, with no internet. I exchanged actual letters with other mothers of disabled children. 🙂 I never did meet another family with a WW child in person.
Despite her prognosis of 6 months to 2 years, my baby lived to be 7 years old. She was so beautiful and so precious, and I miss her every day. Blessings to you and your family!
SD Deals and Steals Kate says
thank you for sharing! Our littlest was born with some special needs and we spent much of the first year in the hospital as well – we did the same, packed a lunch and lugged the big kids if we needed to. it is so hard, but there is something about having a special needs child that is such a blessing. we always prayed for healthy kids, but our little one w special needs has had a rough start but is such a blessing. she has taught our whole family so much! God bless your family!
Champion's Mommy says
I totally agree…there is something about having a special needs child that is a blessing. Its is unexplainable because it is such a tough thing but like you our family has been changed so much by having a child with special needs.