Out of every 5 households, 1 child will have special needs, which can be a physical, cognitive or medical disability. That's about 10 million children in the US.
Luke is one of those kids. Grace is one of those kids.
Luke has several disorders. Early childhood onset glaucoma, microcephaly, ADHD, Tourette Syndrome, sensory integration difficulties and visual and auditory processing needs. After many, many doctor's visits they have determined that there is no syndrome that links anything together, but that Luke kind of hit the lottery, so to speak, of congenital issues.
His disorders (or special needs) have caused medical and developmental problems. He has been in physical, occupational and social therapies. He has had 3 ear surgeries and heart surgery to close a hole in his heart, CAT scans to look at his small head, eye procedures, music therapies, and behavioral therapies. He has been through more doctor specialists than I can count or remember.
Grace has obsessive compulsive disorder. We have been through a lot of testing to rule out certain things. She struggles with academics but gives her best effort. At the onset of her diagnosis we went through two and half years of therapy to help her with the anxiety.
Raising a special needs child, is a blessing and a challenge. It is rewarding and trying. It is inspiring and defeating. It is like you can't have one without the other. You take the good and the not so good. I sometimes long to feel "normal" but have accepted that my "normal" is "not normal" and I am ok with that. Many people will tell me what an excellent job I do with Luke and Grace, and how blessed they are to have parents "like us" but I often feel I am just so blessed to have them in my life. I don't feel like I am anything special, and most days I feel that I am just "not good enough". I yelled when I shouldn't have or didn't do enough activities with them. I fail on so many levels, but I am human. I am a mom. A special needs mom. Mainly though I just like to be known as...Luke's mom and Grace's mom and Bella's mom and Matthew's mom. As a mom of children with special needs, I often feel a myriad of emotions. I wrote a post like this one four years ago and I wanted to update where I am at now and share MY "real" honest thoughts about how I feel as a special needs mom. Maybe you can gain some insight into how it is to be a special needs mom. :)
1.
I am tired...just being a mom is exhausting. Especially to little ones. However, parenting special needs children takes things to another level of being tired. On top of the "normal" parenting things you do with your kiddos, you add therapies into your schedule. While they may attend formal therapy once a week, there is practice and things to do at home several times a week. We may visit doctors and specialists several times a month. Sometimes I feel I live at the orthodontists office, especially now that Luke has braces. As a kiddo with sensory issues, Luke often has a difficult time with all the weird stuff in his mouth. Last month, we had a big check up on Luke's eyes at OHSU. Matthew had a 9 month check up, and there were a slew of other doctor appointments including chest x-ray's for Bella. If its not the medical needs it is the educational needs. I have been fighting (what seems like a very long time) to re-instate Luke's IEP (Individual Educational Plan). I finally have a meeting to begin the evaluation process on Monday. I keep emailing, I keep advocating, I keep fighting even when there seems to be no fight left in me. I am ALWAYS advocating for him and Grace and Bella in all realms of life and making sure each child receives what they deserve and need. The NEW news is that Matthew is about to undergo a full developmental evaluation due to the fact he has some issues that have concerned me (I've only told Mark and my mom). I took him to a screening and he is being referred on to the Infant Toddler Early Intervention Program. And while I am thankful we live in a place that has such programs, I am concerned about the thought of added therapies. The emotional toll of all I carry, causes me to be tired. I am a worrier by nature and I spend many hours thinking about my kids and trying to come up with possible solutions, new therapies, researching, praying. Some of my recent thoughts include: what new foods can I give Matthew to help with his sensory issues, what can I do to encourage him to try saying new sounds, how can I help Grace and Luke be more organized...(just to name a couple).
2.
I am jealous...I almost didn't put this one down...again. You can read my post four years ago about what I was struggling with
here. I thought about this again, and sadly it is still SO true. I don't want to admit that I am jealous, and I thought perhaps in the last four years I have grown and this no longer applies. But I am being HONEST here. I feel jealous of moms whose kids can play on typical sports teams, school sports teams or have children that don't always finish last with physical activity. I feel jealous of moms who don't have sit beside there children and coax them to try their homework, and then don't have to email all their teachers to let them know what they didn't complete. I feel jealous of moms that can go away for a weekend. I tried to go away for two nights to an adoption retreat. Oh how I needed it. But, I made it one night before one of my children ended up in the ER and I came home. I was so glad they were ok, but I cried for a couple days because I felt so disappointed that something I looked forward to for so long (the retreat) was over for another year. I am jealous of moms that have a dozen babysitters on speed dial (or even one). I get that we have four kids and it is a lot, but having a babysitter that was available would be amazing. I keep praying about this. My kids are so wonderful, but they can be difficult. My mom has been very helpful watching the kids and offering to watch the kids (which I appreciate more than I can express), but she works full time and is tired and sometimes we need someone last minute. In the last four years, I have also experienced jealousy of moms who still have there fathers. I miss mine everyday. Anytime I watch a father hug his daughter, it's there...jealousy. I just plain miss mine. He was always full of great insight, help and support. I grieve still that he isn't here to have a relationship with his grandbabies. He would have been and amazing grandpa.
3.
I feel alone... Most days I spend completely alone (with my kids). I am more comfortable in this role than I was four years ago, but I would still echo as a special needs mom I feel alone. Mark works a weird schedule these days, so when he goes to work in the morning I don't have much contact with anyone who isn't a therapist, a school teacher, a doctor or specialist. I try and visit a friend once a week, but it doesn't always happen. I could use the support of other moms with children who have the same type of issues. That is why the Called to Love Retreat has been so wonderful for me. I can physically see that I am NOT the ONLY one who is walking this path. We recently began attending a new church, and I am happy to report that there is another mama who is walking my same path at church. Which is an amazing blessing! I am hopeful that perhaps we can connect more because I could sure use her friendship.
4.
I am human...I am not a saint, even though well meaning people do try and tell me I am. I have bad days, off days, days I feel like I am failing and think I am not doing a good job. Being a special needs mom has really re-shaped my life in many, many good ways. Luke and Grace have helped me discover who I really am. I have realized that I am a lot stronger than what I thought. I have learned to be pushy, confrontational when I need to be, how to fight, speak and advocate for those who cannot. In the past four years, I have also learned that I have limitations, and it is ok to admit when you need help. I am in therapy currently for anxiety/depression, and I sought out the help of a doctor and I am on medication. I am human. And I am ok with it. Both therapy and medication have helped me in a huge way. I no longer spend everyday crying, I don't feel like I am the verge of a breakdown, I am not in a constant state of worry, and I am not over analyzing every weird twinge or symptom in my body. I still have dreams of things I would like to accomplish, but for now I would settle for reading a book, painting or going to the spa. (A mom can dream right?)
5.
I am scared...This one is difficult to admit too...still. While I don't dwell on this thought too often, it is part of raising children with special needs. I am scared that I won't do something or find the right therapy for them. I am scared Luke is going to be blind someday due to his glaucoma. I am scared I won't know the right things to say when we talk about their adoptions or know how to answers their questions? I am scared I am not doing enough or that I am doing too much? I am scared when Luke goes to school that other kids are mean to him, or he doesn't eat his lunch cause he talks too much, or that he isn't following the rules. I worry Grace isn't turning her work in or she is distracted. I am scared that time is going by too quickly...moments are passing I won't ever get back. Have I been enough? done enough? loved enough? advocated enough? taught enough? played enough?
My life is forever changed (for the better) by raising Luke and Grace (and Bella and Matthew too). They bless me in ways that I can't explain. When I look into Luke and Grace's eyes, and I see how happy they are, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call them all mine. Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", ask her to "finish the job," tell them "no" or the million other things I do, I remember that God according to His plan choose us for them. I don't take that lightly. I was called to this "position"...to take up my weapon and fight for those who cannot. I know that the mere existence of Luke and Grace is a promise that God has a BIG plan for their lives. I really believe it. So even though it may not look so pretty in the trenches, I am there, I am fighting. I am real. I am THEIR mom.
