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.
He 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.
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 how blessed he is to have parents "like us" but I often feel I am just so blessed to have him 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 him. 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 and Bella's). As a mom of children with special needs, I often feel a myriad of emotions. I took this idea from another blog and wanted to 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 a special needs child takes things to another level of being tired. On top of the "normal" parenting things you do with your kiddos you add into your schedule therapies. While he may attend formal therapy once a week, there is practice and therapies to do at home several times a week. We may visit doctors and specialists several times a month. In February Luke visited the orthodontist 5 times. In March so far he has been to OHSU for his eyes. He will also go visit his primary care doctor this month too. If its not the medical it is the educational. I have had my share of battles with the IEP team and fighting with them to make sure that he is receiving what is written into his IEP. There is a whole week in October I will never be getting back. There is advocating for him in all realms of life and making sure each "player" is performing their best to give Luke everything he deserves and needs. The emotional toll causes one to be tired. I am a worrier by nature and I spend many hours thinking about Luke and trying to come up with possible solutions, new therapies, researching, praying.
2.
I am jealous...I almost didn't put this one down. I thought about it a lot and sadly it is SO true. I would never want to admit this to anyone or let anyone see this side of me. But I am being HONEST here. :) I am sure my mom sees it, but she displays such grace and never "lets on" that she knows. I feel the pains of jealousy when I see boys Luke's age able to go on a retreat at church, and know that I couldn't send him without Mark and I. I feel jealous of mom's whose children can play regular sports or have children that don't always finish last with physical activities. I feel jealous Luke can't attend a private Christian School because they cannot meet his needs. I feel jealous when other mom's can go away for the weekend without children. (I know this sounds a little selfish, but I am not perfect and just being REAL.) Recently...one of my closest friends went to Disneyland with her husband for the weekend, and when she text me I cried for 10 minutes (how pathetic is that?). It wasn't because I was upset or mad. I was very happy she got to go, as she had been wanting to for a long time..But I was just jealous. I had the realization that "even if we were able to go financially" I couldn't...because I don't have anyone that I can leave all 3 kids with. I don't know of anyone that would be able to handle the dynamics of the 3 of mine for 1 night away...let alone two or three. Last time Mark and I went on a date with no children with us, (which was three months ago for 3 hours) I was so worried about the kids (mainly Luke) that I couldn't even enjoy myself. My stomach was in knots. Luke can throw some rippin tantrums, and has a difficult time with change in routine. He can melt down easily when he is feeling anxious. How did it get this way? The last time Mark and I went away for 1 night, just the 2 of us was November 2009. We could SO use a break to recharge, re coop, reconnect, but I don't know how to do that. I am jealous of those that can and do. Our relationship could use just some "us" time that doesn't include hospital food or going to the latest "specialist" together (but don't get me wrong...I am so grateful he is there).
3.
I feel alone... I went to a MOMS group at the beginning of this year. It was a sweet group of ladies, very welcoming, but I only went once. When I shared "my" story, of becoming a mom, I had 5 other moms at the table looking back at me like "deer in headlights." They weren't ready for the truth about foster care, special needs, adoption, medications, therapies, medical doctors, specialists. They were more on the level of "so which grocery store do shop at?" and "what are your favorite brand of diapers?" I am not saying this is bad...it is a wonderful group of mommy's...it was just not the "connection" I was looking for. Which leads me to this point of "I feel alone." Most days I spend completely alone (with my kids). Marks works a weird schedule these days, so my really only adult contact is my daily phone call to my mom, connection with a therapist, a school teacher, a doctor or specialist. I could use the support of other moms with children who have the same type of issues....I am sure there is some group out there...just haven't found it yet.
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 Luke's mom has really re-shaped my life in many, many good ways. He has 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. I still have dreams of my own...things I would like to accomplish. A few dreams that have lingered since before I became Luke's mom. Memories of the past. I still love to get my nails done, shop and visit Starbucks. Music helps...I love my iPod.
5.
I am scared...This one is difficult to admit too. While I don't dwell on this thought too much, it is part of raising a child with special needs. I am scared that I won't do something or find the right therapy for him. I am scared he is going to be blind someday. I am scared I won't know the right thing to say when we really talk about adoption and his history someday when he asks, if he asks? I am scared I am not doing enough or that I am doing too much? I am scared when he 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 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. He blesses me in ways that I can't explain. When I look into his eyes, and I see how happy he is, and then I think of the alternative (which I can't describe), I am blessed....a hundred times blessed...to call him mine. Every time I break up an argument, model appropriate behavior, remind him "he is not the parent", tell him "no" or the million other things I do, I remember that God according to His plan choose us for that little boy. 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 is a promise that God has a BIG plan for his life. I really believe it. So even though it may not look so pretty in the trenches, I am fighting. I am real. I am HIS mom.
