I love it when a plan comes together

For a long time now, I’ve wondered why God sent Liam to me. Not in a “why me?”, feeling-sorry-for-myself kind of way, but I wonder constantly what makes me uniquely qualified to be Liam’s mother because I believe the children we get are sent to us for a purpose. Especially when almost daily I feel completely inadequate to deal with the unique challenges that being Liam’s mom brings, I wonder what qualities I possess that made Heavenly Father say, “This quirky little martian? Send him to Shauna! She is the perfect mother to handle that.” Now, understand that I will NEVER feel like I am the PERFECT mother to handle Liam’s challenges, but I will say that today I feel like I understand a little bit why he was sent to me.

Maybe it’s the redhead in me, but I have very strong opinions about things. And, much to the chagrin of my husband, I ALWAYS think I am right. Now, I’m not saying this is a great quality of mine, but I will say that it helps me to be a better mom for Liam. When doctors wanted to amputate his fingers, I didn’t just say “Doctors know best.” I got online and researched my butt off on the subject and I fought for what I felt was right for my son. We had to fly clear across the country and spend a ton of money that we wouldn’t have had to otherwise (we were originally accepted to Shriner’s Hospital in Salt Lake, so Liam’s surgeries would have been completely free), but we don’t ever regret our decision and know that it was right for Liam.

Fast forward to today. Many of our friends and family know about Liam’s developmental delays, some of you do not. Basically, Liam has been working with therapists since he was 11 months old, teaching him how to do everything from roll over on his own to walking and most recently speech therapy and social skills. Liam doesn’t just pick up on things and develop skills the way other kids do. Everything that he knows how to do, it has been an uphill battle to teach him to do it. When Liam turned three, he was evaluated by the school system and it was determined that he qualified for special education services, so he started a special needs preschool. Now, when you have a child in the special ed program, they have a little meeting called an IEP (Individualized Education Plan) to determine what that child’s needs are and then make specific goals. Because I had no idea what to expect, I just assumed that the specialists from the school would know what services he needed and create appropriate goals from there. When Liam’s IEP was created, these specialists kept checking boxes right and left saying that Liam didn’t need this service or that service. It seemed to me at the time that he was not getting nearly enough services, but every time I raised a concern, they’d tell me that that part of the program didn’t apply to Liam. Well… this has not sat well with me. I have now done my research, talked with a couple specialists outside of Liam’s “team” and am now prepared to go to battle with the school to get Liam the services he needs.

Even though I feel inadequate (what mother doesn’t, amiright?) to be entrusted with such a special little boy, I know now that I do have unique qualities to be Liam’s mother. Liam needed a mother that could fight for him. Despite all my faults, I am not a person that can be steamrolled by “policies” or pushed around by doctors and specialists simply because they ARE doctors and specialists. I am that mother that will not shut up or back down until I get what I want. And as annoying as that can be for all of you that have to deal with me on a regular basis (Sorry, Jesse! I love you!), I’m glad it’s the way that I am. Because I finally feel like I have something unique to offer my son. A reason why he was sent to me. Heavenly Father said, “This little boy has got a long, hard road ahead of him, send him to that feisty redhead!”

Liam and Mommy

This entry was posted in Liam, Liam's Macrodactyly, Life, School, Special Education Program. Bookmark the permalink.

8 Responses to I love it when a plan comes together

  1. Shauna the other Shauna says:

    You’re lovely and I love you. What a lucky boy he is. I worry for anyone caught standing in the way of getting Liam what he needs. What a dangerous place to stand… 😉

  2. Aunt Greta says:

    Shauna, You are amazing.

  3. Laura garcia says:

    My grandson has the same macrodactyly illness and I would like to know how is Liam doing after the surgery because I’m planing to take my grand kid to Boston to get a second opinion.

  4. Shauna says:

    Laura, Liam is doing great. His function of the affected digits continues to improve. Just the other day, I saw him PICK UP A MARBLE between his thumb and middle fingers. The first doctor we saw thought we would eventually have to amputate BOTH of those fingers. What an idiot. Yes… get a second opinion in Boston. I cannot recommend Dr. Labow highly enough.

  5. Laura garcia says:

    Thank you for taking the time to reply back to me, I’m happy to hear that your son is doing well. I’m going to take my grandson to ucsla hospital and my second option would be Boston. I’m going to keep in mind Dr.labow and once again thank you very much. God bless you and your beautiful family.
    I would like to keep in touch with you about liam’s progress because it’s hard to find information about this illness, and many doctors recommend apputation.

  6. Karie Sutton says:

    Jesse, I have been looking for some insight as well from the internet and have not been completely successful. We have a son who was just recently diagnosed with macrodatyly of his thumb and pointer finger. At this time he is demonstrating some bulky tissue in his Rt LE as well. We have gone to two specialists at this time and they both have given us the option of de-bulking or amputation. From there experience de-bulking has not been very successful for their patients and I was wondering today how is your son is doing with the de-bulking. We are know seeing a genetics specialist and they are looking into what is called NF1. We have also been advised that every 3 months Max will have to go for ultra sounds of is abdomin until he is eight looking for any tumors. Some how there is a corilation with enlarged appendages and cancerus tumors. The percentage is very low but the Dr’s want to be on the cautious side. At this time we have decided to amputate his pointer finger secondary to it is curving across his middle finger and is now waking him up out of a dead sleep due to pain. But I am completely in denial. This decision is and was not the easiest one to make for my husband and I and we hope that we are making the right decision for our son. We have asked the Dr’s how do you even begin to explain to a 3 year old that he is going to have to have his finger removed. You can’t use the word sick for fear that he will corilate it with illness down the line and we do not want to say cut because to a 3 year old that word is very scary. The Dr’s had no answers for us:( Which in my eyes is very hard to understand becuase this Dr. specializes in this type of thing and his area is peds. Any thought?

    • Jesse says:

      The debulking worked very well for Liam. He uses the repaired fingers daily and has a lot more use from them than he did prior to it. I think he actually enjoys having a larger pointer finger since it gives him a lot more reach for light switches and the like. He definitely will need additional debulking, but we feel like this was the best route for him.

  7. Karie Sutton says:

    Jesse, I appreciate all of the feedback. I wish you and your family all the best.

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